Prophylactic Mastectomy

[Smith1942]

Since Phoenix's update, and since I was doing my lengthy self-check yesterday that I do every month, I thought I'd post about this because I've pretty much come to a decision, without too much soul-searching. What I have to say about my decision might help others in my shoes.

I have a stack of risk factors for breast cancer. My mother's mother died of it, and my mother is now in a terminal situation from breast cancer which has spread. It popped up again 13 years after her first bout, in her spine and pelvis, no cure. I have been overweight in the past, and due to a job which was so busy that I was like a cartoon blur, went for quite a few years without doing much exercise, hence the weight gain. I have fixed those areas now, but it did go on for a long time. These are risk factors for breast cancer. However, through my childhood up to my early twenties, I was a very hard exerciser through dance, so that's in my favour. Also, I did not start my periods too early, it was a week after my thirteenth birthday, so that's in my favour too. Early menarche is another risk factor for breast cancer.

Other risk factors that I have are Pill use, previous fibroadenoma, late child-bearing and dense, lumpy fibrocystic breasts, all of which are risk factors.

So, since my mother was re-diagnosed 10 months ago, from the first round in 1999, it's been on my mind whether I should do an Angelina. The pink lobby would have you believe that breast cancer is almost always curable, but in about 20 - 25% of people it comes back, like it has with my mum, and at that stage it's very aggressive. To quote the New York Times, "While the pink-ribbon campaign has raised awareness about breast cancer, it masks a relentless killer." What happens at that stage is that the cancer finds it way around all drugs, eventually. You get a drug, it works for a range of approx 6-24 months, anecdotally a year or so, then it stops working and you go onto the next one until you're out of drugs.

Another one of breast cancer's scarier traits is that it's quite capable of popping up again 20 years later, unlike some other cancers where if you are cured the first time, you stay that way.

So, despite the perkiness of the pink lobby, this disease can be really nasty and I have certainly had reason to consider an Angelina, with my grandma dying of it and my mum presenting 13 years out from initial diagnosis with it mysteriously back in her spine and pelvis (which is terminal).

I was doing my breast check yesterday, mulling it over, and I just felt that, for me, the answer was no.

Mitigating factors: We may have an undiscovered gene. On the other hand, since my grandma was 80, her breast cancer could have been due to old age and my mum's could have been random. It's possible that the two cancers are unconnected.

I had a fibroadenoma, but they are very common in young women.

Doing an Angelina - so both sides - isn't just one op. It's a surgical journey, and can result in lymphodema and restricted use of your shoulders and arms. My mother couldn't raise her arm above shoulder height for the longest time, and she also had complications so had to go back for another op. Anecdotally, there does seem to be quite a high complication rate, and it would be a long time before I had the easy, full range of motion in my shoulders and arms that I now have, if it would ever be quite the same. Doing both sides is obviously worse than one.

Unless you have a super-high risk like Angelina did from her BRCA1 gene (87%), it's quite a thing to do to yourself when you may not need to.

And it occurred to me, you could have a PBMX (prophylactic bilateral mastectomy) - and then you could get colon cancer! Or kidney cancer - a PBMX is no guarantee. Even if you have a PBMX, you still have to go for mammograms because the surgeons can't get all the breast tissue. I had no idea, but you have breast tissue scattered across your abdomen, above the collar bone and in the armpits. So a PBMX doesn't even take away all your risk.

The only thing that makes me second-guess my decision is my extremely hard, lumpy right breast. That's where I had the common fibroadenoma at 21, and I'm suspicious of that breast. It feels very different from the other one.

But, however, I hadn't even thought too hard about the issue, when the answer just came to me yesterday, that it would be a great pity to do that, when I may well not need to. I do eat better and exercise more than the other women in the family, I was always an exerciser in my youth and apart from those few busy years in London, I have exercised hard. I haven't always been consistent with it, but the other women in my family never did a scrap of exercise once in their lives. The significance of this is that recent studies are showing that exercise has a marked effect on breast cancer risk.

So, I have pretty much decided against a PBMX, and I feel quite peaceful with that decision. I think it's important to note that what seems like a risk factor may not be - i.e. it's quite possible that my mother's and grandmother's cancers are unconnected, due to the older ages at which they occurred.

It's also important to note that there are a ton of intensive screening programmes out there for people with family histories of breast cancer.

I hope the factors discussed here might help anyone else who has struggled with the spectre of a PBMX.

I have an older sister who is 42. Of course, if she gets diagnosed with breast cancer, I'll be thoroughly spooked and the picture may change!

 

[rosetta]

I have all your risk factors and I would never consider prophylactic mastectomies. Not unless I was BRCA 1 or 2 positive (would definitely have them then)

My mother is still going strong 5 years on from stage III breast cancer.

Breast cancer is one of the more curable cancers, so I would totally be against unnecessary mastectomies. I can't think of a single leading breast cancer specialist (and I know a lot of them) who would unequivocally advise mastectomies with your family history. Your history doesn't meet genetic referral criteria in the UK actually.

Keep checking, keep having regular mammograms/MRIs. Your decision not to have surgery is one I wholeheartedly support.

 

[JaneSmith]

People thinking about preventative mastectomy need to go and have a long talk with their doctor and get screened for BRCA1 & 2 by a genetic counsellor should they choose to do so.


To paraphrase a breast cancer surgeon whose website I read:
BRCA mutations are actually responsible for a very small percentage of early onset breast cancer.
Mastectomies do not remove every last cell of breast epithelial tissue at risk for cancer, and therefore even preventative mastectomy does not reduce the risk of breast cancer to zero.
http://www.sciencebasedmedicine.org/angelina-jolie-radical-strategies-for-cancer-prevention-and-genetics-denialism/

Here is a piece about screening in a asymptomatic women:
http://www.sciencebasedmedicine.org/a-holiday-round-in-the-mammography-debate/#more-23584

Here is a link to a quick BRCA risk calculator:
https://www.myriadpro.com/brca-risk-calculator/calc.html



I'm so sorry about your mum, I hope she is comfortable.

 

[Mico]

Sounds like a well thought out, well educated decision, thank you for sharing your story.

 

[AprilBaby]

My mother died at 33 of aggressive breast cancer but no one else. I am 54, overweight, rarely exercise. I get a mammogram every year. I doubt I have the brac gene so unless I get a positive mammogram I wouldn't even think of doing a mastectomy.

 

[Smith1942]

Thanks everyone.

Rosetta- thanks for your response. It's interesting to note that breast cancer is one of the more curable cancers. Because my mother and grandmother had/currently have the incurable form, I think my perception of its curability is somewhat skewed. My family doesn't have any signs of the BRCA 1 & 2 genes, but it's possible we have an undiscovered gene. There are families where it's rampant but have no BRCA genes, so it seems that more are to be discovered. A missing piece of our family jigsaw is that my mother is an only child; if she had had a sister, we would have had a better idea where we stood, depending on whether the sister had developed it or not.

Jane Smith - thanks for posting the links. Will read them all. Yes, 80% of breast cancer cases have no family history at all. My mum is more comfortable now, ten months from her re-diagnosis, thank you for asking. After having it first in 1999, she had her first metastatic-related back pain in 2008 and it took four years to get it diagnosed, by which time she was starting to spend time in a wheelchair as she couldn't walk due to the pain in her pelvis and spine. She was also very breathless due to numerous blood clots in her lungs. Apparently the cancer makes your blood sticky. She started blood-thinning drugs, a cancer drug and also bone-strengthening drugs in December last year, but was still in a lot of pain during my February visit. Then, at my May visit, she was a little better but my dad wasn't coping, and now, she is walking normally and she says she feels absolutely fine. She says she can always feel a tightish band around her middle. Last year it was just in her spine and pelvis, and a common next stop is the liver. So it's just a matter of time until it spreads more, but right now she is doing very well. I feel lucky. She is able to come over here for Thanksgiving. She actually hasn't been scanned since her diagnosis. I was under the impression that she should be, to see what the cancer's doing.

Mico - thanks, I hope it helps others.

Aprilbaby - So very sorry to hear about your mum, that is so young to pass away. (((Hugs.)))

 

[Beacon]

Hi Smith, are you one of my relatives?

Very similar story as yours, my mom died of bc and her two aunts above her had it, one died, one had timely surgery and lived til 83.

As my oncologist told me: your family history is significant, but not alarming. My sis and I both tested brca negative.

Based on your situation, prophylactic MX seems too drastic. What you need is a high surveillance regime. Rather tha go into all of that, which is a huge topic and varies greatly depending on your situation, I recommend a website called breastcancer.org. It was many forums, including one called : high risk women

You can learn a lot there and formulate a plan.

So sorry to learn of your mom's illness. Breast cancer is sometimes curable, but really, they don't even know that. Sometimes it just hides for a long time and resurfaces. Sounds like this happened with your mom. I am so sorry.

 

[rosetta]

Aw, smith I'm very sorry to hear about your mother. She certainly has been unlucky. I hope she remains comfortable as long as possible.

I won't scare you with talk of all the really nasty cancers then!!

 

[lulu]

Well, for what it's worth I'll add my story. When my mom was 66 (94) she was diagnosed with metastatic breast cancer. There was negligence on her doctor's part, but I don't want to go off on that tangent. She went through chemo and radiation and lived about 18 months after diagnosis.

Around 1998 a mammogram detected a suspicious area in my left breast.I was 45. They did a biopsy and diagnosed LCIS-lobular carcinoma in situ. I was told that it was not cancer, but it was an indication that I was high risk. I was offered a prophylactic double mastectomy, but I was also told that 5 years of tamoxifen would equally reduce my risk. I opted for the tamoxifen and for the first 2 years or so experienced few side effects, but it was cumulative. By year three I was 30 pounds heavier, thick brained and clumsy. Nobody in the medical community warned me about the side effects. The last 2 years were hell, but I thought since I already had three years invested I should finish.

The genetic testing was negative. Since finishing the tamoxifen I lost the weight, regained my mental clarity and have had consistently normal mammograms. If I had known what the tamoxifen was like I'd have opted for the double mastectomy. I've already decided that if they find anything I'm going to have both ladies removed. But I'm 60 now, and I've never been that into them. They never had anything to do with my identity as a woman. Life, on the other hand,is precious. I want to dance at my grandchildren's weddings.

 

[rosetta]

Well, for what it's worth I'll add my story. When my mom was 66 (94) she was diagnosed with metastatic breast cancer. There was negligence on her doctor's part, but I don't want to go off on that tangent. She went through chemo and radiation and lived about 18 months after diagnosis.

Around 1998 a mammogram detected a suspicious area in my left breast.I was 45. They did a biopsy and diagnosed LCIS-lobular carcinoma in situ. I was told that it was not cancer, but it was an indication that I was high risk. I was offered a prophylactic double mastectomy, but I was also told that 5 years of tamoxifen would equally reduce my risk. I opted for the tamoxifen and for the first 2 years or so experienced few side effects, but it was cumulative. By year three I was 30 pounds heavier, thick brained and clumsy. Nobody in the medical community warned me about the side effects. The last 2 years were hell, but I thought since I already had three years invested I should finish.

The genetic testing was negative. Since finishing the tamoxifen I lost the weight, regained my mental clarity and have had consistently normal mammograms. If I had known what the tamoxifen was like I'd have opted for the double mastectomy. I've already decided that if they find anything I'm going to have both ladies removed. But I'm 60 now, and I've never been that into them. They never had anything to do with my identity as a woman. Life, on the other hand,is precious. I want to dance at my grandchildren's weddings.

I have to say, I'm struggling to understand why you were offered tamoxifen only lulu. I would have recommended either breat-conserving surgery or mastectomy with or without tamoxifen depending on your risk factors (the evidence for tamoxifen in in-situ disease is mostly for DCIS as well, not LCIS). But I'm in the UK, so we may be doing things differently. The treatment you had would not be standard here. At least your tamoxifen ordeal is now over!

 

[Smith1942]

Aw, smith I'm very sorry to hear about your mother. She certainly has been unlucky. I hope she remains comfortable as long as possible.

I won't scare you with talk of all the really nasty cancers then!!

Thanks Rosetta.

Re. your reply to Lulu, it seems treatments are often very different in the US and the UK. Over here in the US, when someone has metastatic breast cancer, they scan you after you've been on a new drug for a while to see what the cancer's doing. If it hasn't responded, they try a new drug. Then after a few months, they scan again, rinse and repeat till they find something that makes the cancer retreat, if temporarily (except in some cases I guess, where nothing works). But with my mum, she was diagnosed 10 months ago, and she is not having any more scans. She is on anastrozole and Xgeva, which seem to be working as her symptoms are vastly improved, but for all we know it could be travelling into her liver and she might need chemo, but since they don't seem to have any intention of scanning her again, we wouldn't know. And she is very passive and won't ask. She's on BUPA, so it's not a resources issue. So, maybe in the UK, tests are more symptom-driven, I don't know.

 

[Smith1942]

Hi Smith, are you one of my relatives?

Very similar story as yours, my mom died of bc and her two aunts above her had it, one died, one had timely surgery and lived til 83.

As my oncologist told me: your family history is significant, but not alarming. My sis and I both tested brca negative.

Based on your situation, prophylactic MX seems too drastic. What you need is a high surveillance regime. Rather tha go into all of that, which is a huge topic and varies greatly depending on your situation, I recommend a website called breastcancer.org. It was many forums, including one called : high risk women

You can learn a lot there and formulate a plan.

So sorry to learn of your mom's illness. Breast cancer is sometimes curable, but really, they don't even know that. Sometimes it just hides for a long time and resurfaces. Sounds like this happened with your mom. I am so sorry.

Thanks, Beacon. Do you mind if I ask how old you are? I'm 39 (39 today actually!) I have been on breastcancer.org but the stories on there can be quite upsetting. I agree about the surveillance, but it's stressful and prone to false positives. I'm tempted just to have ordinary mammos.

 

[Smith1942]

Lulu, thank you so much for sharing your story. It sounds very stressful. Sorry you had such a bad experience on the tamoxifen. xxxx

 

[Beacon]

Well, for what it's worth I'll add my story. When my mom was 66 (94) she was diagnosed with metastatic breast cancer. There was negligence on her doctor's part, but I don't want to go off on that tangent. She went through chemo and radiation and lived about 18 months after diagnosis.

Around 1998 a mammogram detected a suspicious area in my left breast.I was 45. They did a biopsy and diagnosed LCIS-lobular carcinoma in situ. I was told that it was not cancer, but it was an indication that I was high risk. I was offered a prophylactic double mastectomy, but I was also told that 5 years of tamoxifen would equally reduce my risk. I opted for the tamoxifen and for the first 2 years or so experienced few side effects, but it was cumulative. By year three I was 30 pounds heavier, thick brained and clumsy. Nobody in the medical community warned me about the side effects. The last 2 years were hell, but I thought since I already had three years invested I should finish.

The genetic testing was negative. Since finishing the tamoxifen I lost the weight, regained my mental clarity and have had consistently normal mammograms. If I had known what the tamoxifen was like I'd have opted for the double mastectomy. I've already decided that if they find anything I'm going to have both ladies removed. But I'm 60 now, and I've never been that into them. They never had anything to do with my identity as a woman. Life, on the other hand,is precious. I want to dance at my grandchildren's weddings.

I have to say, I'm struggling to understand why you were offered tamoxifen only lulu. I would have recommended either breat-conserving surgery or mastectomy with or without tamoxifen depending on your risk factors (the evidence for tamoxifen in in-situ disease is mostly for DCIS as well, not LCIS). But I'm in the UK, so we may be doing things differently. The treatment you had would not be standard here. At least your tamoxifen ordeal is now over!

Neither of these procedures are standard of care for LCIS in the united states. Almost all LCIS is estrogen receptor positive and the data indicates tamoxifen is very effective as chemo prevention. Tamoxifen plus high surveillance is standard of care for LCIS unless there are other mitigating factors or the patient has a request for more dramatic surgery.

 

[minousbijoux]

I had back to back kids in my 30's and nursed solidly for about 5 years (saying this in case it has any bearing). After I was done, I began a workout and diet regime that got me back down to a good weight. But after I worked out it seemed, my left breast would hurt and I could feel lumps (always had incredibly lumpy feeling breasts with dense breast tissue as many of us do). I won't go into the story of doctor negligence either, but after complaining for several months of what felt like a blocked milk duct (umm, yes, those were my exact words, since I had experienced that when nursing), and having turned 40 several months prior, my doctor reluctantly - and in a dismissive and pissy tone - directed me to have my first mammogram. "Highly suspicious of Malignancy" are words I'll never forget and words you never want to see written about a mammogram.

I immediately had a surgical biopsy (they took so much that it was a de facto lumpectomy) and was diagnosed with Stage 3b, er+, highly aggressive invasive breast cancer (lobular? Can't remember) with DCIS every where. The multiple tumors were so big that they decided to do neo-adjuvant chemo to see if they could be shrunk before mastectomy. I had a choice as to whether to have a bilateral mastectomy at that time and chose not to. My logic was that it was a highly hormone driven cancer and that with tamoxifen and LH/RH agonists (shots to basically turn off my repro system), I should be okay... So I decided to have a mastectomy with the beginnings of reconstruction at that time. In fact, the surgery indicated that it was more advanced than they thought and was in my lymph nodes as well, with not the best prognosis (as far as my reading indicated, it was about 50/50 at the time, though no doctors would come out and say that). However, second opinions all agreed that hormone therapy, radiation and more chemo would give me as good a shot as any. The whole thing was long, and grueling, especially with two toddlers, but it was years ago now and all is well.

Am I happy that I did not have a bilateral mastectomy? Yes. Do I match? Not at all, but its all good! I love that I still have some of me as I feel a little bionic on the other side. Oh, I should add that I was tested and was found not to have the gene, but my aunt, cousin, and mother have all had breast cancer (though postmenopausal, which is typically much less invasive and aggressive).

Some people need the piece of mind; others of us want to feel like we have some of us left - there is no one, or right, answer.

 

[Smith1942]

I have all your risk factors and I would never consider prophylactic mastectomies. Not unless I was BRCA 1 or 2 positive (would definitely have them then)

My mother is still going strong 5 years on from stage III breast cancer.

Breast cancer is one of the more curable cancers, so I would totally be against unnecessary mastectomies. I can't think of a single leading breast cancer specialist (and I know a lot of them) who would unequivocally advise mastectomies with your family history. Your history doesn't meet genetic referral criteria in the UK actually.

Keep checking, keep having regular mammograms/MRIs. Your decision not to have surgery is one I wholeheartedly support.

Rosetta, I am so sorry that your mother had breast cancer, but equally I am so glad to hear that she is out the other side and doing well. Long may it continue!

 

[Smith1942]

I had back to back kids in my 30's and nursed solidly for about 5 years (saying this in case it has any bearing). After I was done, I began a workout and diet regime that got me back down to a good weight. But after I worked out it seemed, my left breast would hurt and I could feel lumps (always had incredibly lumpy feeling breasts with dense breast tissue as many of us do). I won't go into the story of doctor negligence either, but after complaining for several months of what felt like a blocked milk duct (umm, yes, those were my exact words, since I had experienced that when nursing), and having turned 40 several months prior, my doctor reluctantly - and in a dismissive and pissy tone - directed me to have my first mammogram. "Highly suspicious of Malignancy" are words I'll never forget and words you never want to see written about a mammogram.

I immediately had a surgical biopsy (they took so much that it was a de facto lumpectomy) and was diagnosed with Stage 3b, er+, highly aggressive invasive breast cancer (lobular? Can't remember) with DCIS every where. The multiple tumors were so big that they decided to do neo-adjuvant chemo to see if they could be shrunk before mastectomy. I had a choice as to whether to have a bilateral mastectomy at that time and chose not to. My logic was that it was a highly hormone driven cancer and that with tamoxifen and LH/RH agonists (shots to basically turn off my repro system), I should be okay... So I decided to have a mastectomy with the beginnings of reconstruction at that time. In fact, the surgery indicated that it was more advanced than they thought and was in my lymph nodes as well, with not the best prognosis (as far as my reading indicated, it was about 50/50 at the time, though no doctors would come out and say that). However, second opinions all agreed that hormone therapy, radiation and more chemo would give me as good a shot as any. The whole thing was long, and grueling, especially with two toddlers, but it was years ago now and all is well.

Am I happy that I did not have a bilateral mastectomy? Yes. Do I match? Not at all, but its all good! I love that I still have some of me as I feel a little bionic on the other side. Oh, I should add that I was tested and was found not to have the gene, but my aunt, cousin, and mother have all had breast cancer (though postmenopausal, which is typically much less invasive and aggressive).

Some people need the piece of mind; others of us want to feel like we have some of us left - there is no one, or right, answer.

Wow, Minou, that's quite a story. I am so sorry to hear that you went through such a gruelling time. Do you mind my asking how long ago it was? I am so glad to hear that all is well now. Did the doctors ever hazard a guess as to why you got it? I mean, I know you have a family history but like you say, the pattern is quite different as yours was premenopausal. Perhaps yours was a random occurrence.

So glad to hear you're OK now and it's all in the past!

 

[minousbijoux]

One of the things I cannot stand is the attribution of blame in something like cancer. I am in no way taking issue with your question, Smith, its just that it brings back so many memories...I had so many people saying "helpful" things like "you gotta stay positive" when I was being treated, the implication being...what, that if I didn't, I'd be causing the cancer to spread?!! If there is one expression I hate to hear now its "Il faut de garder ton morale" because I heard it so much! I am now over the ten year mark, and counting. I am sooo grateful and hopeful and am so sad when I hear stories like your Mom's. I wish her and all of you God speed.

There were reasons that should have made it more likely and reasons that should've made it less likely for me. The good ones: I was always in shape, vegetarian for years and years, walked everywhere, ate well and spiritual.

The bad ones: alcohol consumption started pretty early in life (teenage time), irregular menstrual cycles, had my kids after 30, weight gain, stressful job and a relatively unhappy marriage, thyroid disease in my young adulthood, which resulted in radiation treatment/exposure...

The one thing we can be sure of is that we don't know. The bottom line is that you have to do what feels right for you so you don't look back and wish something different.

 

[rosetta]

Well, for what it's worth I'll add my story. When my mom was 66 (94) she was diagnosed with metastatic breast cancer. There was negligence on her doctor's part, but I don't want to go off on that tangent. She went through chemo and radiation and lived about 18 months after diagnosis.

Around 1998 a mammogram detected a suspicious area in my left breast.I was 45. They did a biopsy and diagnosed LCIS-lobular carcinoma in situ. I was told that it was not cancer, but it was an indication that I was high risk. I was offered a prophylactic double mastectomy, but I was also told that 5 years of tamoxifen would equally reduce my risk. I opted for the tamoxifen and for the first 2 years or so experienced few side effects, but it was cumulative. By year three I was 30 pounds heavier, thick brained and clumsy. Nobody in the medical community warned me about the side effects. The last 2 years were hell, but I thought since I already had three years invested I should finish.

The genetic testing was negative. Since finishing the tamoxifen I lost the weight, regained my mental clarity and have had consistently normal mammograms. If I had known what the tamoxifen was like I'd have opted for the double mastectomy. I've already decided that if they find anything I'm going to have both ladies removed. But I'm 60 now, and I've never been that into them. They never had anything to do with my identity as a woman. Life, on the other hand,is precious. I want to dance at my grandchildren's weddings.

I have to say, I'm struggling to understand why you were offered tamoxifen only lulu. I would have recommended either breat-conserving surgery or mastectomy with or without tamoxifen depending on your risk factors (the evidence for tamoxifen in in-situ disease is mostly for DCIS as well, not LCIS). But I'm in the UK, so we may be doing things differently. The treatment you had would not be standard here. At least your tamoxifen ordeal is now over!

Neither of these procedures are standard of care for LCIS in the united states. Almost all LCIS is estrogen receptor positive and the data indicates tamoxifen is very effective as chemo prevention. Tamoxifen plus high surveillance is standard of care for LCIS unless there are other mitigating factors or the patient has a request for more dramatic surgery.

I'm very interested in this. Can you please link to the trial data upon which this management is based? I'm a UK based oncologist-in-training, hence my interest in expanding my knowledge of varying practice. Thanks very much!

ETA: I forgot to add that surveillance only is a perfectly acceptable option in the UK; surgery only if the patient wanted treatment of some sort. I was under the impression that the trial evidence for tamoxifen (thus far) was inconclusive as to whether the benefits of tamoxifen outweigh the risks, but I'm not up to date on breast Ca which seems to change faster than lightening! Looking forward to learning more....

 

[rosetta]

One of the things I cannot stand is the attribution of blame in something like cancer. I am in no way taking issue with your question, Smith, its just that it brings back so many memories...I had so many people saying "helpful" things like "you gotta stay positive" when I was being treated, the implication being...what, that if I didn't, I'd be causing the cancer to spread?!! If there is one expression I hate to hear now its "Il faut de garder ton morale" because I heard it so much! I am now over the ten year mark, and counting. I am sooo grateful and hopeful and am so sad when I hear stories like your Mom's. I wish her and all of you God speed.

There were reasons that should have made it more likely and reasons that should've made it less likely for me. The good ones: I was always in shape, vegetarian for years and years, walked everywhere, ate well and spiritual.

The bad ones: alcohol consumption started pretty early in life (teenage time), irregular menstrual cycles, had my kids after 30, weight gain, stressful job and a relatively unhappy marriage, thyroid disease in my young adulthood, which resulted in radiation treatment/exposure...

The one thing we can be sure of is that we don't know. The bottom line is that you have to do what feels right for you so you don't look back and wish something different.

Sorry to hear about your diagnosis minous, but glad to hear you've come through the other side!

 

[Smith1942]

I understand, Minou. So very glad you are OK now.

 

[Beacon]

Well, for what it's worth I'll add my story. When my mom was 66 (94) she was diagnosed with metastatic breast cancer. There was negligence on her doctor's part, but I don't want to go off on that tangent. She went through chemo and radiation and lived about 18 months after diagnosis.

Around 1998 a mammogram detected a suspicious area in my left breast.I was 45. They did a biopsy and diagnosed LCIS-lobular carcinoma in situ. I was told that it was not cancer, but it was an indication that I was high risk. I was offered a prophylactic double mastectomy, but I was also told that 5 years of tamoxifen would equally reduce my risk. I opted for the tamoxifen and for the first 2 years or so experienced few side effects, but it was cumulative. By year three I was 30 pounds heavier, thick brained and clumsy. Nobody in the medical community warned me about the side effects. The last 2 years were hell, but I thought since I already had three years invested I should finish.

The genetic testing was negative. Since finishing the tamoxifen I lost the weight, regained my mental clarity and have had consistently normal mammograms. If I had known what the tamoxifen was like I'd have opted for the double mastectomy. I've already decided that if they find anything I'm going to have both ladies removed. But I'm 60 now, and I've never been that into them. They never had anything to do with my identity as a woman. Life, on the other hand,is precious. I want to dance at my grandchildren's weddings.

I have to say, I'm struggling to understand why you were offered tamoxifen only lulu. I would have recommended either breat-conserving surgery or mastectomy with or without tamoxifen depending on your risk factors (the evidence for tamoxifen in in-situ disease is mostly for DCIS as well, not LCIS). But I'm in the UK, so we may be doing things differently. The treatment you had would not be standard here. At least your tamoxifen ordeal is now over!

Neither of these procedures are standard of care for LCIS in the united states. Almost all LCIS is estrogen receptor positive and the data indicates tamoxifen is very effective as chemo prevention. Tamoxifen plus high surveillance is standard of care for LCIS unless there are other mitigating factors or the patient has a request for more dramatic surgery.

I'm very interested in this. Can you please link to the trial data upon which this management is based? I'm a UK based oncologist-in-training, hence my interest in expanding my knowledge of varying practice. Thanks very much!

ETA: I forgot to add that surveillance only is a perfectly acceptable option in the UK; surgery only if the patient wanted treatment of some sort. I was under the impression that the trial evidence for tamoxifen (thus far) was inconclusive as to whether the benefits of tamoxifen outweigh the risks, but I'm not up to date on breast Ca which seems to change faster than lightening! Looking forward to learning more....

The original studies are old and well known. I have the hard copy print out, but here is a short abstract. This project tested women with elevated risk including a cohort with LCIS. There are large scale studies within this project regarding the propensity of LCIS to advance to invasive disease and the utility of tamoxifen in management. It's a 50% reduction of risk. Women with LCIS are estimated to have a 20% lifetime chance of acquiring invasive disease, so with tamox reducing that 20% by 50% it is an effective strategy. That much said, it is not the only strategy as each case presents unique risk factors, patient preference, etc.

http://www.ncbi.nlm.nih.gov/pubmed/9747868

 

[minousbijoux]

Thank you all for the kind words and thoughts. Fwiw, when I was being treated, I went to see a breast cancer specialist at UCSF who told me that given my er+ cancer, he would not have recommended traditional chemo at all, but hormone therapy (i.e., tamoxifen) with the usual radiation. At the time, his approach was considered somewhat unconventional, but now it is considered much more mainstream.

 

[rosetta]

Well, for what it's worth I'll add my story. When my mom was 66 (94) she was diagnosed with metastatic breast cancer. There was negligence on her doctor's part, but I don't want to go off on that tangent. She went through chemo and radiation and lived about 18 months after diagnosis.

Around 1998 a mammogram detected a suspicious area in my left breast.I was 45. They did a biopsy and diagnosed LCIS-lobular carcinoma in situ. I was told that it was not cancer, but it was an indication that I was high risk. I was offered a prophylactic double mastectomy, but I was also told that 5 years of tamoxifen would equally reduce my risk. I opted for the tamoxifen and for the first 2 years or so experienced few side effects, but it was cumulative. By year three I was 30 pounds heavier, thick brained and clumsy. Nobody in the medical community warned me about the side effects. The last 2 years were hell, but I thought since I already had three years invested I should finish.

The genetic testing was negative. Since finishing the tamoxifen I lost the weight, regained my mental clarity and have had consistently normal mammograms. If I had known what the tamoxifen was like I'd have opted for the double mastectomy. I've already decided that if they find anything I'm going to have both ladies removed. But I'm 60 now, and I've never been that into them. They never had anything to do with my identity as a woman. Life, on the other hand,is precious. I want to dance at my grandchildren's weddings.

I have to say, I'm struggling to understand why you were offered tamoxifen only lulu. I would have recommended either breat-conserving surgery or mastectomy with or without tamoxifen depending on your risk factors (the evidence for tamoxifen in in-situ disease is mostly for DCIS as well, not LCIS). But I'm in the UK, so we may be doing things differently. The treatment you had would not be standard here. At least your tamoxifen ordeal is now over!

Neither of these procedures are standard of care for LCIS in the united states. Almost all LCIS is estrogen receptor positive and the data indicates tamoxifen is very effective as chemo prevention. Tamoxifen plus high surveillance is standard of care for LCIS unless there are other mitigating factors or the patient has a request for more dramatic surgery.

I'm very interested in this. Can you please link to the trial data upon which this management is based? I'm a UK based oncologist-in-training, hence my interest in expanding my knowledge of varying practice. Thanks very much!

ETA: I forgot to add that surveillance only is a perfectly acceptable option in the UK; surgery only if the patient wanted treatment of some sort. I was under the impression that the trial evidence for tamoxifen (thus far) was inconclusive as to whether the benefits of tamoxifen outweigh the risks, but I'm not up to date on breast Ca which seems to change faster than lightening! Looking forward to learning more....

The original studies are old and well known. I have the hard copy print out, but here is a short abstract. This project tested women with elevated risk including a cohort with LCIS. There are large scale studies within this project regarding the propensity of LCIS to advance to invasive disease and the utility of tamoxifen in management. It's a 50% reduction of risk. Women with LCIS are estimated to have a 20% lifetime chance of acquiring invasive disease, so with tamox reducing that 20% by 50% it is an effective strategy. That much said, it is not the only strategy as each case presents unique risk factors, patient preference, etc.

http://www.ncbi.nlm.nih.gov/pubmed/9747868

Thanks for this, I'd forgotten about this old study. I guess we tend to prefer observation in the Uk. I learned something today so thanks for the info (i don't do breast cancer on a daily basis) Are you an oncologist?

 

[Smith1942]

Isaku - thinking of you. Hugs xxx

 

[Smith1942]

Isaku - sorry, I replied to you on the wrong thread. I've found your response on the "Mammogram" thread and replied to you there. Too late to delete this one.

 

[TooPatient]

Well, for what it's worth I'll add my story. When my mom was 66 (94) she was diagnosed with metastatic breast cancer. There was negligence on her doctor's part, but I don't want to go off on that tangent. She went through chemo and radiation and lived about 18 months after diagnosis.

Around 1998 a mammogram detected a suspicious area in my left breast.I was 45. They did a biopsy and diagnosed LCIS-lobular carcinoma in situ. I was told that it was not cancer, but it was an indication that I was high risk. I was offered a prophylactic double mastectomy, but I was also told that 5 years of tamoxifen would equally reduce my risk. I opted for the tamoxifen and for the first 2 years or so experienced few side effects, but it was cumulative. By year three I was 30 pounds heavier, thick brained and clumsy. Nobody in the medical community warned me about the side effects. The last 2 years were hell, but I thought since I already had three years invested I should finish.

The genetic testing was negative. Since finishing the tamoxifen I lost the weight, regained my mental clarity and have had consistently normal mammograms. If I had known what the tamoxifen was like I'd have opted for the double mastectomy. I've already decided that if they find anything I'm going to have both ladies removed. But I'm 60 now, and I've never been that into them. They never had anything to do with my identity as a woman. Life, on the other hand,is precious. I want to dance at my grandchildren's weddings.

I have to say, I'm struggling to understand why you were offered tamoxifen only lulu. I would have recommended either breat-conserving surgery or mastectomy with or without tamoxifen depending on your risk factors (the evidence for tamoxifen in in-situ disease is mostly for DCIS as well, not LCIS). But I'm in the UK, so we may be doing things differently. The treatment you had would not be standard here. At least your tamoxifen ordeal is now over!

Neither of these procedures are standard of care for LCIS in the united states. Almost all LCIS is estrogen receptor positive and the data indicates tamoxifen is very effective as chemo prevention. Tamoxifen plus high surveillance is standard of care for LCIS unless there are other mitigating factors or the patient has a request for more dramatic surgery.

I'm very interested in this. Can you please link to the trial data upon which this management is based? I'm a UK based oncologist-in-training, hence my interest in expanding my knowledge of varying practice. Thanks very much!

ETA: I forgot to add that surveillance only is a perfectly acceptable option in the UK; surgery only if the patient wanted treatment of some sort. I was under the impression that the trial evidence for tamoxifen (thus far) was inconclusive as to whether the benefits of tamoxifen outweigh the risks, but I'm not up to date on breast Ca which seems to change faster than lightening! Looking forward to learning more....

The original studies are old and well known. I have the hard copy print out, but here is a short abstract. This project tested women with elevated risk including a cohort with LCIS. There are large scale studies within this project regarding the propensity of LCIS to advance to invasive disease and the utility of tamoxifen in management. It's a 50% reduction of risk. Women with LCIS are estimated to have a 20% lifetime chance of acquiring invasive disease, so with tamox reducing that 20% by 50% it is an effective strategy. That much said, it is not the only strategy as each case presents unique risk factors, patient preference, etc.

http://www.ncbi.nlm.nih.gov/pubmed/9747868

I think John Hopkins Cancer Center has another study completed more recently. Not sure if they published yet as I don't follow those publications. My grandmother (breast cancer survivor) was a part of their study on long term use of tamoxifen after (paired with?) radiation. If I remember correctly, they were gathering data for different lengths of time on tamoxifen to see how much additional benefit (if any) came from taking it for longer vs shorter periods of time.

She has been cancer free for right about 10 years

 

[rosetta]

Well, for what it's worth I'll add my story. When my mom was 66 (94) she was diagnosed with metastatic breast cancer. There was negligence on her doctor's part, but I don't want to go off on that tangent. She went through chemo and radiation and lived about 18 months after diagnosis.

Around 1998 a mammogram detected a suspicious area in my left breast.I was 45. They did a biopsy and diagnosed LCIS-lobular carcinoma in situ. I was told that it was not cancer, but it was an indication that I was high risk. I was offered a prophylactic double mastectomy, but I was also told that 5 years of tamoxifen would equally reduce my risk. I opted for the tamoxifen and for the first 2 years or so experienced few side effects, but it was cumulative. By year three I was 30 pounds heavier, thick brained and clumsy. Nobody in the medical community warned me about the side effects. The last 2 years were hell, but I thought since I already had three years invested I should finish.

The genetic testing was negative. Since finishing the tamoxifen I lost the weight, regained my mental clarity and have had consistently normal mammograms. If I had known what the tamoxifen was like I'd have opted for the double mastectomy. I've already decided that if they find anything I'm going to have both ladies removed. But I'm 60 now, and I've never been that into them. They never had anything to do with my identity as a woman. Life, on the other hand,is precious. I want to dance at my grandchildren's weddings.

I have to say, I'm struggling to understand why you were offered tamoxifen only lulu. I would have recommended either breat-conserving surgery or mastectomy with or without tamoxifen depending on your risk factors (the evidence for tamoxifen in in-situ disease is mostly for DCIS as well, not LCIS). But I'm in the UK, so we may be doing things differently. The treatment you had would not be standard here. At least your tamoxifen ordeal is now over!

Neither of these procedures are standard of care for LCIS in the united states. Almost all LCIS is estrogen receptor positive and the data indicates tamoxifen is very effective as chemo prevention. Tamoxifen plus high surveillance is standard of care for LCIS unless there are other mitigating factors or the patient has a request for more dramatic surgery.

I'm very interested in this. Can you please link to the trial data upon which this management is based? I'm a UK based oncologist-in-training, hence my interest in expanding my knowledge of varying practice. Thanks very much!

ETA: I forgot to add that surveillance only is a perfectly acceptable option in the UK; surgery only if the patient wanted treatment of some sort. I was under the impression that the trial evidence for tamoxifen (thus far) was inconclusive as to whether the benefits of tamoxifen outweigh the risks, but I'm not up to date on breast Ca which seems to change faster than lightening! Looking forward to learning more....

The original studies are old and well known. I have the hard copy print out, but here is a short abstract. This project tested women with elevated risk including a cohort with LCIS. There are large scale studies within this project regarding the propensity of LCIS to advance to invasive disease and the utility of tamoxifen in management. It's a 50% reduction of risk. Women with LCIS are estimated to have a 20% lifetime chance of acquiring invasive disease, so with tamox reducing that 20% by 50% it is an effective strategy. That much said, it is not the only strategy as each case presents unique risk factors, patient preference, etc.

http://www.ncbi.nlm.nih.gov/pubmed/9747868

I think John Hopkins Cancer Center has another study completed more recently. Not sure if they published yet as I don't follow those publications. My grandmother (breast cancer survivor) was a part of their study on long term use of tamoxifen after (paired with?) radiation. If I remember correctly, they were gathering data for different lengths of time on tamoxifen to see how much additional benefit (if any) came from taking it for longer vs shorter periods of time.

She has been cancer free for right about 10 years

That's fantastic news about your grandmother! You may be thinking of the ATLAS trial which recently reported benefits of extended tamoxifen use (10 vs 5 years).

 

[TooPatient]

Well, for what it's worth I'll add my story. When my mom was 66 (94) she was diagnosed with metastatic breast cancer. There was negligence on her doctor's part, but I don't want to go off on that tangent. She went through chemo and radiation and lived about 18 months after diagnosis.

Around 1998 a mammogram detected a suspicious area in my left breast.I was 45. They did a biopsy and diagnosed LCIS-lobular carcinoma in situ. I was told that it was not cancer, but it was an indication that I was high risk. I was offered a prophylactic double mastectomy, but I was also told that 5 years of tamoxifen would equally reduce my risk. I opted for the tamoxifen and for the first 2 years or so experienced few side effects, but it was cumulative. By year three I was 30 pounds heavier, thick brained and clumsy. Nobody in the medical community warned me about the side effects. The last 2 years were hell, but I thought since I already had three years invested I should finish.

The genetic testing was negative. Since finishing the tamoxifen I lost the weight, regained my mental clarity and have had consistently normal mammograms. If I had known what the tamoxifen was like I'd have opted for the double mastectomy. I've already decided that if they find anything I'm going to have both ladies removed. But I'm 60 now, and I've never been that into them. They never had anything to do with my identity as a woman. Life, on the other hand,is precious. I want to dance at my grandchildren's weddings.

I have to say, I'm struggling to understand why you were offered tamoxifen only lulu. I would have recommended either breat-conserving surgery or mastectomy with or without tamoxifen depending on your risk factors (the evidence for tamoxifen in in-situ disease is mostly for DCIS as well, not LCIS). But I'm in the UK, so we may be doing things differently. The treatment you had would not be standard here. At least your tamoxifen ordeal is now over!

Neither of these procedures are standard of care for LCIS in the united states. Almost all LCIS is estrogen receptor positive and the data indicates tamoxifen is very effective as chemo prevention. Tamoxifen plus high surveillance is standard of care for LCIS unless there are other mitigating factors or the patient has a request for more dramatic surgery.

I'm very interested in this. Can you please link to the trial data upon which this management is based? I'm a UK based oncologist-in-training, hence my interest in expanding my knowledge of varying practice. Thanks very much!

ETA: I forgot to add that surveillance only is a perfectly acceptable option in the UK; surgery only if the patient wanted treatment of some sort. I was under the impression that the trial evidence for tamoxifen (thus far) was inconclusive as to whether the benefits of tamoxifen outweigh the risks, but I'm not up to date on breast Ca which seems to change faster than lightening! Looking forward to learning more....

The original studies are old and well known. I have the hard copy print out, but here is a short abstract. This project tested women with elevated risk including a cohort with LCIS. There are large scale studies within this project regarding the propensity of LCIS to advance to invasive disease and the utility of tamoxifen in management. It's a 50% reduction of risk. Women with LCIS are estimated to have a 20% lifetime chance of acquiring invasive disease, so with tamox reducing that 20% by 50% it is an effective strategy. That much said, it is not the only strategy as each case presents unique risk factors, patient preference, etc.

http://www.ncbi.nlm.nih.gov/pubmed/9747868

I think John Hopkins Cancer Center has another study completed more recently. Not sure if they published yet as I don't follow those publications. My grandmother (breast cancer survivor) was a part of their study on long term use of tamoxifen after (paired with?) radiation. If I remember correctly, they were gathering data for different lengths of time on tamoxifen to see how much additional benefit (if any) came from taking it for longer vs shorter periods of time.

She has been cancer free for right about 10 years

That's fantastic news about your grandmother! You may be thinking of the ATLAS trial which recently reported benefits of extended tamoxifen use (10 vs 5 years).

Could be!

At the time she was going through her treatments, I was more worried about her getting healthy and having it stay gone. She got her diagnosis in the final couple of months of my other grandmother's life (she died after 6 years of a cancer diagnosed as terminal but slow growing) so the specifics were a bit too overwhelming for me.

I do know she had almost no side effects from the tamoxifen. There is a chance that it may have been the cause of her hospitalization and unstable sodium levels after ending the study, but they can't say for sure.