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Mayk

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If you've had this experience I would like to hear about it if you don't mind sharing. It doesn't have to be about you it can be about someone you know. I would like to hear about choices made and outcomes. Thanks! :read:
 

Jambalaya

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Hi Mayk, an excellent resource for all things DCIS is here: https://community.breastcancer.org/forum/68 The ladies on this site are awesome, very supportive.

Read the posts by Beesie and her layperson's guide to DCIS in the link above - it's excellent. There are different grades of DCIS of course, and much also depends on the extent of the DCIS. Do you know what, if any, treatment you will have? Sorry you got thrown this curveball. Hugs xxxx
 

azstonie

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Ductal carcinoma in situ? Want to make sure I understand your acronym.
 

Mayk

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Jambalaya|1442686158|3929554 said:
Hi Mayk, an excellent resource for all things DCIS is here: https://community.breastcancer.org/forum/68 The ladies on this site are awesome, very supportive.

Read the posts by Beesie and her layperson's guide to DCIS in the link above - it's excellent. There are different grades of DCIS of course, and much also depends on the extent of the DCIS. Do you know what, if any, treatment you will have? Sorry you got thrown this curveball. Hugs xxxx

Thank you! I've been combing the Internet and I had not come across this site!

I don't know the level yet. Strange the way I found out but my doctor's office was closed on Friday but they knew I'd been waiting a week so the Breast Center called to let me know. They assigned me a Nurse Navigator and she called but I didn't know what questions to ask. Everyone that saw my films felt certain it was benign So I've been either in denial or with my head in the sand and Friday was a shocker.

The Nurse Navigator talked about an MRI, then lumpectomy, and six weeks of radiation like she knew the course I would take. Maybe she knew the level and thought I did.

I now have a very long list of questions and Monday is a ways off...arrive at my best support group PS.
 

Mayk

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azstonie|1442686641|3929558 said:
Ductal carcinoma in situ? Want to make sure I understand your acronym.


Yes, sorry! i should have used the long name. New to this.
 

Mayk

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Jambalaya|1442686158|3929554 said:
Hi Mayk, an excellent resource for all things DCIS is here: https://community.breastcancer.org/forum/68 The ladies on this site are awesome, very supportive.

Read the posts by Beesie and her layperson's guide to DCIS in the link above - it's excellent. There are different grades of DCIS of course, and much also depends on the extent of the DCIS. Do you know what, if any, treatment you will have? Sorry you got thrown this curveball. Hugs xxxx


Second Post! That site is so awesome! Thank you so much! Now I have a ton to do before Monday!
 

Jambalaya

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It will be OK, Mayk. DCIS is stage zero, non-invasive, and lacks any ability to spread, which is why it's called "in situ". You'll have whatever treatment you need and you won't have to worry about it after that, since it's not at the IDC stage (invasive ductal carcinoma, aka breast cancer which can and often does spread at an early stage.) I am really sorry you have to handle this but so glad it's DCIS and not IDC. DCIS is mostly regarded as a pre-cancerous condition, but of course you want to stop it in its tracks. Most women by age 70 have some DCIS and for many at that age, it's harmless. I wish my darling family members had been diagnosed at stage zero but mammograms weren't as good back then. Hugs xxxxxx
 

Jambalaya

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Re. thank-you:

Oh, you're more than welcome, sweetie. That site is a lifesaver. I know that DCIS is mostly pre-cancerous, but it's still an awful shock, especially as it often requires treatment to stop it going any further. Lots and lots of love and hugs to you xxxx

If we lived closer I would let you wear any of my sparklies xxxx
 

Ally T

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Mayk - I am shocked & saddened to hear this news :(sad

Sending you lots of healing love from across the world for a swift recovery x
 

Resonance.Of.Life

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Oh no! I hope for a speedy recovery and that the nurse can be a little more supportive and help you navigate the tricky waters of the healthcare system. Lots and lots of love for you!


(HUGS)
 

azstonie

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Mayk, there are completed research studies that will give you the information and science you will want to make a decision here (of course, you will need the specifics in hand and you don't have those yet). Studies that were released in the last 2 years. Go to the New York Times website, their Health section and search using "Breast cancer" and "DCIS." Try Google, same thing, look for studies and NIH studies.

Breast cancer treatment discussions can almost go kind of political in nature. I don't want to say anything here that would scare someone OR conversely freak someone out at what they might mistake as nonchalance. Having said that, please remember to get a second opinion. What you will want to get one is either computer images (attachable in an email) or hard copy of your imaging and then the Radiologist's report (those are two separate things, btw). You will also want a copy of the pathology report and if you're being super careful about defining what you've got there, have another sample taken at a different facility, preferably a breast specialty outfit or surgeon, and have them give you a second opinion which includes their diagnosis, their proposed treatment plans, and the math/algorithm of the treatment plans.

For example: Adding radiation would buy you an additional 5% risk reduction---chemotherapy would buy you 7.5% additional risk reduction. You would make the risk management decision. You can always try chemo and stop if you do badly and you'll know the trade off there. Radiation is a little tougher, once you've had radiation you can't 'stop' it but you can stop further treatment if its a problem.

DCIS can be pretty squishy in terms of diagnosis and treatment planning. Get the second opinion, please.

Be sure that watchful waiting is included in the treatment plans and algorithms.

Some DCIS, if I had it, I would do watchful waiting.

One other thing, and I don't want to create any arguments here, but think long and hard about letting a surgeon take the lymph nodes. Yes, I know, they love to get data/information through them to stage you, BUT if you get lymphedema following the lymphadenectomy, you will never feel the same and you'll fight it the rest of your life (swelling and pain and difficulty using the arm) and for what? You can tell that I would not have the lymphadenectomy, because I don't believe it makes a whole lot of difference in making treatment plans, frankly. Why give up a good serviceable pain-free unswollen arm in that case?

Lots of healthy dust to you (if this is regarding you).
 

Mayk

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azstonie|1442696170|3929608 said:
Mayk, there are completed research studies that will give you the information and science you will want to make a decision here (of course, you will need the specifics in hand and you don't have those yet). Studies that were released in the last 2 years. Go to the New York Times website, their Health section and search using "Breast cancer" and "DCIS." Try Google, same thing, look for studies and NIH studies.

Breast cancer treatment discussions can almost go kind of political in nature. I don't want to say anything here that would scare someone OR conversely freak someone out at what they might mistake as nonchalance. Having said that, please remember to get a second opinion. What you will want to get one is either computer images (attachable in an email) or hard copy of your imaging and then the Radiologist's report (those are two separate things, btw). You will also want a copy of the pathology report and if you're being super careful about defining what you've got there, have another sample taken at a different facility, preferably a breast specialty outfit or surgeon, and have them give you a second opinion which includes their diagnosis, their proposed treatment plans, and the math/algorithm of the treatment plans.

For example: Adding radiation would buy you an additional 5% risk reduction---chemotherapy would buy you 7.5% additional risk reduction. You would make the risk management decision. You can always try chemo and stop if you do badly and you'll know the trade off there. Radiation is a little tougher, once you've had radiation you can't 'stop' it but you can stop further treatment if its a problem.

DCIS can be pretty squishy in terms of diagnosis and treatment planning. Get the second opinion, please.

Be sure that watchful waiting is included in the treatment plans and algorithms.

Some DCIS, if I had it, I would do watchful waiting.

One other thing, and I don't want to create any arguments here, but think long and hard about letting a surgeon take the lymph nodes. Yes, I know, they love to get data/information through them to stage you, BUT if you get lymphedema following the lymphadenectomy, you will never feel the same and you'll fight it the rest of your life (swelling and pain and difficulty using the arm) and for what? You can tell that I would not have the lymphadenectomy, because I don't believe it makes a whole lot of difference in making treatment plans, frankly. Why give up a good serviceable pain-free unswollen arm in that case?

Lots of healthy dust to you (if this is regarding you).

It's me.

Thank you so very much for all this awesome information. Some really great points and action steps that I need to be aware of. Most of this is still very GREEK to me. I see what you mean about "political". People on the forum listed up above are very opinionated on course of action. I will be anxious to get more answers next week. Thank you again!
 

Jambalaya

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Azstonie - just so you know, chemo is never given for DCIS. DCIS is a pre-cancerous condition which sometimes doesn't even need treatment at all. Chemo is a systemic treatment for breast cancer. Breast cancer is invasive and DCIS is not. You would never give a DCIS patient chemo. It's important to know basic facts about DCIS before posting here. Also, risk reductions - that is, the percentage gain from treatment - is specific to each patient depending on their medical history, their personal risk factors, and the genetics of their DCIS. There are different grades of DCIS, for example, and hundreds of genes involved. So treatment is highly tailored to the individual, and only the oncologist can give a risk reduction percentage to a particular patient. Breast issues are extremely complex. You might find this link helpful: https://community.breastcancer.org/forum/68/topic/724075

It's important to remember that DCIS is only a pre-cancerous condition. Breast cancer itself is IDC, invasive ductal carcinoma, which is a completely different animal. DCIS is "in situ", which means it can't hurt you. People have DCIS treated only because it can sometimes turn into breast cancer over time, and there's no way of telling which DCIS would have stayed as DCIS and which would have turned into breast cancer. You can take a guess by whether the DCIS is grade 1, 2, or 3. But DCIS by itself is totally harmless.

You mentioned nodes, but lymph nodes are usually not taken in DCIS because it can't spread. When someone has IDC, i.e. breast cancer, it's usually only the sentinel node they take these days, greatly cutting the risk of lymphedema. It's not like 15 years ago when my sis had 34 lymph nodes taken (and never developed lymphedema anyway, as most don't.) These things are not concerns in DCIS, only in IDC.
 

Calliecake

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Mayk, I'm sorry I have no useful information for you but want you to know that I'm sending lots of dust your way for a quickly recovery. I am sorry you are having to deal with this. Hugs, Callie
 

lulu

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I was diagnosed with lobular carcinoma in situ when I was in my late 40s. (62 now) I was offered a prophylactic bilateral mastectomy or 5 years of tamoxifen and I did the latter. It wasn't easy and there were a lot of side effects, but my mom died of breast cancer so I pushed through.

I've had clear mammograms since but I'm very vigilant about screening.
 

MissGotRocks

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I too am sorry that you have to deal with this. Best wishes to you as you gather information and make decisions. Sounds like this could have a good prognosis for you but as with all things, it is a process to get through. Will certainly be thinking of you!!
 

Gypsy

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I'm sorry honey. I imagine you are very scared. ((HUGS)).
 

azstonie

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Jambalaya|1442700099|3929623 said:
Azstonie - just so you know, chemo is never given for DCIS. DCIS is a pre-cancerous condition which sometimes doesn't even need treatment at all. Chemo is a systemic treatment for breast cancer. Breast cancer is invasive and DCIS is not. You would never give a DCIS patient chemo. It's important to know basic facts about DCIS before posting here. Also, risk reductions - that is, the percentage gain from treatment - is specific to each patient depending on their medical history, their personal risk factors, and the genetics of their DCIS. There are different grades of DCIS, for example, and hundreds of genes involved. So treatment is highly tailored to the individual, and only the oncologist can give a risk reduction percentage to a particular patient. Breast issues are extremely complex. You might find this link helpful: https://community.breastcancer.org/forum/68/topic/724075

It's important to remember that DCIS is only a pre-cancerous condition. Breast cancer itself is IDC, invasive ductal carcinoma, which is a completely different animal. DCIS is "in situ", which means it can't hurt you. People have DCIS treated only because it can sometimes turn into breast cancer over time, and there's no way of telling which DCIS would have stayed as DCIS and which would have turned into breast cancer. You can take a guess by whether the DCIS is grade 1, 2, or 3. But DCIS by itself is totally harmless.

You mentioned nodes, but lymph nodes are usually not taken in DCIS because it can't spread. When someone has IDC, i.e. breast cancer, it's usually only the sentinel node they take these days, greatly cutting the risk of lymphedema. It's not like 15 years ago when my sis had 34 lymph nodes taken (and never developed lymphedema anyway, as most don't.) These things are not concerns in DCIS, only in IDC.

I wasn't assuming Dcis, I wrote my response poorly. Would want 2nd opinion before committing to that diagnosis (or any other that significant) I agree with your post, btw. (Where I worked, I saw a good bit of lymphedema. The past 9 years.)
 

Jambalaya

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azstonie|1442719014|3929717 said:
Jambalaya|1442700099|3929623 said:
Azstonie - just so you know, chemo is never given for DCIS. DCIS is a pre-cancerous condition which sometimes doesn't even need treatment at all. Chemo is a systemic treatment for breast cancer. Breast cancer is invasive and DCIS is not. You would never give a DCIS patient chemo. It's important to know basic facts about DCIS before posting here. Also, risk reductions - that is, the percentage gain from treatment - is specific to each patient depending on their medical history, their personal risk factors, and the genetics of their DCIS. There are different grades of DCIS, for example, and hundreds of genes involved. So treatment is highly tailored to the individual, and only the oncologist can give a risk reduction percentage to a particular patient. Breast issues are extremely complex. You might find this link helpful: https://community.breastcancer.org/forum/68/topic/724075

It's important to remember that DCIS is only a pre-cancerous condition. Breast cancer itself is IDC, invasive ductal carcinoma, which is a completely different animal. DCIS is "in situ", which means it can't hurt you. People have DCIS treated only because it can sometimes turn into breast cancer over time, and there's no way of telling which DCIS would have stayed as DCIS and which would have turned into breast cancer. You can take a guess by whether the DCIS is grade 1, 2, or 3. But DCIS by itself is totally harmless.

You mentioned nodes, but lymph nodes are usually not taken in DCIS because it can't spread. When someone has IDC, i.e. breast cancer, it's usually only the sentinel node they take these days, greatly cutting the risk of lymphedema. It's not like 15 years ago when my sis had 34 lymph nodes taken (and never developed lymphedema anyway, as most don't.) These things are not concerns in DCIS, only in IDC.

I wasn't assuming Dcis, I wrote my response poorly. Would want 2nd opinion before committing to that diagnosis (or any other that significant) I agree with your post, btw. (Where I worked, I saw a good bit of lymphedema. The past 9 years.)

I feel sorry for those with lymphedema, and glad that so many fewer nodes are taken nowadays for those who have breast cancer.

If the OP is at a good medical facility, I don't think she needs a second opinion, necessarily? DCIS isn't hard to diagnose and she will have a further test - a breast MRI - and then after the lumpectomy, pathology will examine the area of DCIS thoroughly to confirm it's pure DCIS with no areas of IDC. The sooner that happens, the better, since biopsies only look at a small piece. What we women go through. We deserve our diamonds!
 

azstonie

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Hi Jambie: Lot of the newest studies say to forget getting those lymph nodes. They don't change treatment choices. Why risk lymphedema for nothing. Back when I was working I used to see postop patients in the Breast Clinic and think "No lymph node removals for me, thank you very much."

Mayk, I would encourage you to try to hold only the best thoughts here, okay? Give this article a read, it is excellent:

http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande

Most breast cancers are indolent, meaning they won't be the process of that cancer that takes your life, you will indeed have that type of cancer but it'd be a stroke, a heart attack, etc that winds up killing you in the end. A small percentage of breast cancer is inflammatory. That is the worrisome one. Very small percentage, so hold that thought.

Imaging tends to uncover a substantial reservoir of indolent disease. Disease that docs are only just beginning to know how to discuss with patients and respond to. Cancers are not all the same (check the article) and most of them don't require a nuclear response. SOme require a fly swatter, some observation.

Cancers to actively worry over are late stage colon cancer and any stage pancreatic cancer. Brain tumors are tough and so are other head/neck cancers.

Anecdote re indolent breast cancer: We had women in their 70s, 80s, and 90s come in for a physical exam in Internal Medicine with large to very large tumors in a breast that they'd had for many decades. Healthy women other than that, btw, with outstanding quality of life.

So please, Mayk, don't press that panic button until you have a reason to, okay???? I know you're going to worry, we will worry with you, but until you have a reason to actually panic, please hold on tight!!!

And btw, I don't know where you live BUT breast cancer is one of the cancers where you could go to a prestigious center of excellence for breast cancer, they can confirm your diagnosis and design a treatment plan with you, and then liaise with your local best cancer center who will carry out that treatment plan and liaise right back with that center for excellence. Geography in your case will not defeat you or give you lesser treatment.
 

Jambalaya

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You're right, Azstonie - about many indolent breast issues. But those are not breast cancer - they are pre-cancer, which is what Mayk has, otherwise known as DCIS, or Stage Zero.

Breast cancer, otherwise known as IDC (invasive ductal carcinoma but there are other invasive types too) absolutely does spread and you cannot leave it. It's invasive - it has the ability to invade anywhere it likes. But Mayk doesn't have IDC.

Mayk has only been diagnosed with pre-cancer, or DCIS. If you're old, approx post-70, when diagnosed with DCIS, and it's low grade, you can safely leave it alone in many cases knowing that you will in all likelihood pass away of old age long before the DCIS has a chance to morph. However, if a person is younger like Mayk, there are many more years in which it can turn into IDC. The difficulty is identifying which cases will stay indolent pre-cancer and which will become breast cancer. Since no one has a crystal ball, many younger women decide to treat it. Of course, this depends on the grade and other factors particular to the patient.

It's awful to have pre-cancer, but at least Mayk has had a warning. Most people with breast cancer just present with IDC which has already spread in many cases, which often isn't known until years later. Thank God Mayk's is pre-cancer, non-invasive, and lacks any ability to do harm in its current form.

:wavey:
 

TooPatient

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Mary,

Sending you hugs and dust! I'm so sorry you got that phone call but glad it is "just" DCIS. Scary but so very treatable!

I hope your appointment goes well and you are able to get all of your questions answered.
 

missy

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Mary, I am so sorry about this and I know it is terribly scary. I am thankful it is non invasive and curable and I am sending bucket loads and bucket loads of healing vibes and good luck dust your way. Keeping you in my thoughts and prayers and sending you big hugs and much love.
 

Asscherhalo_lover

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My Aunt (Mother's Sister) went through this about 10 years ago. I am very happy for you that this was caught at an early stage and hope for a speedy solution and recovery for you. My Aunt did have a recurrence a few years later but it was treated again and she has been clear since. I plan on being diligent about screenings when I am of age. Hugs and best of luck!
 

Mayk

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Thank you so much for all the support. I've spent the weekend pouring through information provided and the support and reassurance is so appreciated. I vasiclate between being very positive to trying to answer more questions about long term prognosis. I've also tried to find the best way to explain to my 17 year old who is still reeling from my birth mother's diagnosis of Multiple Meyloma this past Spring. She of course went right to the worst case senerio so I've been trying to reassure her and myself at the same time.

Jambalaya the link you posted in the first response has been a huge help to me this week. Helping me realize there will really not be any decisions about treatment options or an assignment of the level of DCIS until after the lumpectomy. I was thinking at first they should have had that info from the biopsy but that is not the case. Knowing this helped me this weekend. Not sure why but it was just one of the things this weekend I was happy to read. At the same time I'm anxious about the MRI which they did say we would get scheduled right away. I'm hoping it doesn't reveal any additional issues.

When I look at the picture on line of DCIS and compare to my pictures which they shared with me both the mammogram and the sonograms they used the area of concern appeared to be very small and not overly concentrated with spots. I've seen some pictures of very densely populated DCIS. I'm sure this could mean nothing but it the way the non medical mind works when self evaluating this felt like a good thing :read:

Having these next few weeks behind me is something I'm looking forward to. Also, not traveling for six weeks... If I go through radiation while it will not be pleasant my family is pretty happy about me not traveling for work. Which I do a lot. There's a strange benefit.. :-o

Again thank you for the support and the reassurance. It's nice to be able to pop into this community and have support and knowledgeable members provide support! {{hugs}}. Thanks for the dust and prayers!
 

House Cat

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Jambalaya|1442720588|3929727 said:
azstonie|1442719014|3929717 said:
Jambalaya|1442700099|3929623 said:
Azstonie - just so you know, chemo is never given for DCIS. DCIS is a pre-cancerous condition which sometimes doesn't even need treatment at all. Chemo is a systemic treatment for breast cancer. Breast cancer is invasive and DCIS is not. You would never give a DCIS patient chemo. It's important to know basic facts about DCIS before posting here. Also, risk reductions - that is, the percentage gain from treatment - is specific to each patient depending on their medical history, their personal risk factors, and the genetics of their DCIS. There are different grades of DCIS, for example, and hundreds of genes involved. So treatment is highly tailored to the individual, and only the oncologist can give a risk reduction percentage to a particular patient. Breast issues are extremely complex. You might find this link helpful: https://community.breastcancer.org/forum/68/topic/724075

It's important to remember that DCIS is only a pre-cancerous condition. Breast cancer itself is IDC, invasive ductal carcinoma, which is a completely different animal. DCIS is "in situ", which means it can't hurt you. People have DCIS treated only because it can sometimes turn into breast cancer over time, and there's no way of telling which DCIS would have stayed as DCIS and which would have turned into breast cancer. You can take a guess by whether the DCIS is grade 1, 2, or 3. But DCIS by itself is totally harmless.

You mentioned nodes, but lymph nodes are usually not taken in DCIS because it can't spread. When someone has IDC, i.e. breast cancer, it's usually only the sentinel node they take these days, greatly cutting the risk of lymphedema. It's not like 15 years ago when my sis had 34 lymph nodes taken (and never developed lymphedema anyway, as most don't.) These things are not concerns in DCIS, only in IDC.

I wasn't assuming Dcis, I wrote my response poorly. Would want 2nd opinion before committing to that diagnosis (or any other that significant) I agree with your post, btw. (Where I worked, I saw a good bit of lymphedema. The past 9 years.)

I feel sorry for those with lymphedema, and glad that so many fewer nodes are taken nowadays for those who have breast cancer.

If the OP is at a good medical facility, I don't think she needs a second opinion, necessarily? DCIS isn't hard to diagnose and she will have a further test - a breast MRI - and then after the lumpectomy, pathology will examine the area of DCIS thoroughly to confirm it's pure DCIS with no areas of IDC. The sooner that happens, the better, since biopsies only look at a small piece. What we women go through. We deserve our diamonds!
I would have a second opinion.


I have read too many articles about DCIS being over dx and being treated too aggressively.


MHO.
 

Jambalaya

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Hi House Cat, yes you're right, there is definitely an issue with DCIS being over-treated in some cases. A few years ago there was an article in the WSJ about women having really aggressive treatment, like double mastectomies, for a condition that may never have hurt them anyway. There was some concern about this in the medical establishment. Most breast cancer starts as DCIS, and the difficulty is knowing which DCIS can be safely left and which will turn into invasive breast cancer. That's a really hard call. But these days, cancer genetics is ever more advanced and treatment (or not) depends on the hundreds of genes in the area of involvement, the grade of the DCIS (there are three grades) and the patient's personal risk factors, such as age of menarche, parity status, Pill use, HRT use, family history, and more. Breast tissue is very active and the complexity of breast issues has to be experienced to be believed.

Final diagnoses are not given until the area of involvement is removed and every part is examined by pathology. Only then can you know if it's true DCIS or if there are any areas of IDC. If Mayk (Hi Mayk!) trusts her doctors and is at a good facility, getting a second opinion is just delaying a firm diagnosis, in my humble opinion. But if she feels more comfortable getting a second opinion before acting then of course she should do that.

:wavey:
 

Jambalaya

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Hi Mayk, glad you're feeling OK and that the area looks small with not too many micro-calcifications. If you find yourself getting too anxious during this time, a really excellent book that helps put worry into perspective is "How To Stop Worrying and Start Living". It's a wonderful book that helps you stay in the present moment and not let your mind wander off wherever it wants.

Your job sounds interesting. Do you travel internationally or within the States for work? I'd always be buying jewelry at the locations as "souvenirs" if it were me!

I think you deserve something nice and sparkly when this is all done.
 

azstonie

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Disagree re indolent breast cancer *only* being DCIS. That is not correct.

But the point of the thread is to reassure Mayk and the back and forth isn't likely to serve in that capacity.
 

Jambalaya

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Yes, and fortunately we can reassure Mayk because she has been diagnosed with DCIS which is totally treatable. All will be well, even if it's a PITA in the meantime. But that's what rewarding yourself with sparklies is for, right? :razz:
 
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