I would love some advice.....on a scary topic. Breast cancer.

[FireGoddess]

We just found out my mom has it. At best, it's stage 3. We don't know if it has spread yet. Those tests are scheduled for next week. Needless to say, we're totally freaked out and very scared.

At this day and age, with the woman having gone every year to get mammograms for the last 20 years, I am IRATE that she could be diagnosed at (best case scenario) a stage 3. Her mammograms have looked the same for the last 20 years. Spotless. To quote the doctor, "they are virtually superimposable." Even 3 weeks ago she was given a *clean bill of health* because her mammogram was clear. She complained that something has been bothering her. She has complained about it for years and they have waved her off. She finally demanded an ultrasound which they did so that 'she could put her mind at ease.' Turns out the ultrasound wasn't conclusive but warranted further investigation. They did an MRI, which showed a region of concern. This is how the ball got rolling. Another localized ultrasound. A biopsy was done and breast cancer is confirmed. The sheer size of the lesion indicates it's minimally at stage 3. It's big. Note she was given a clean bill of health 3 weeks ago from her mammogram.

I am usually private about these things but I'm sharing this for two reasons. The first is to tell you women out there that MAMMOGRAMS DO NOT DETECT ALL TYPES OF BREAST CANCER. It is imperative that you get regular ultrasounds as well. I want to get in touch with Komen to talk about getting the word out. My mom's doctor is starting to advise his patients of this as well. Why don't we hear about this?!

The second reason is to get advice from those that have gone through it, know others who have gone through it, whatever. Advice on what she can expect to feel, what things helped them cope, live through it, deal with it, beat it, whatever. What my dad can do for her...what I can do for my dad, having to deal with this... As well, I am 3000 miles away - and it's really hard not being near there. Things I can do, important things to physically be there for, etc. Thanks in advance.

 

[monarch64]

Firegoddess, first of all I''m very sorry to hear your news. As a person who knows firsthand what it''s like when a parent is diagnosed with cancer (my father has been through two and a half years of extensive colon cancer treatment) I know how scary it is, and how helpless one feels when they have to stand by and see their parent going through it and not be able to "fix" them.

I''m glad you took the opportunity to send the message to fellow PSr''s that mammograms only sometimes do not pick up on breast cancer. It''s so unfortunate that you weren''t told about ultrasounds, I didn''t know that until I read your post. I will research further and spread the word myself...I''m actually participating in the Avon Walk for Breast Cancer here in Chicago on June 3rd and 4th and as I continue my fundraising I will be sure to include this information--thank you! Please know that your post is already helping educate women and I will certainly do my part to spread the word!

I know it''s also tough to be far away from your mom while she''s dealing with all of this. 3000 miles is really far away! I live about 5 hours from my parents, so I was able to see my dad here and there, and thankfully I was able to find a job that allowed me to have weekends off so I could spend even more time with him.

The Susan G. Komen website is great for breast cancer awareness, obviously...there is also a site called avonwalk.org, and the Mayo Clinic website also has great resources. Those are just a few I know of off the top of my head for those who would like to research the topic further.

I have not personally known any family members or friends who''ve been diagnosed with breast cancer. But 1 in 8 women will get the disease statistically, which is why I chose to do the Avon Walk. As a woman, I feel it''s a huge issue and I felt compelled to do my part in raising awareness.

Take care!

Heather

 

[Linda W]

I am SO Sorry to hear this about your dear mother. This indeed, is very scary. How in the world could this have happened.

I am so glad your mother insisted on an ultrasound. I pray for her, that it hasn''t spread. My SIL was diagnosed with breast cancer several years ago and joined a support group, which helped her immensely, maybe it would help your mother also.

Last year, I had a scare also. I found a mass under my armpit. My Dr. put it off as fatty tissue. After months of it "bugging" me, I said it doesn''t feel right I want it checked out. He kept saying it is just fatty tissue. I told him, I don''t care what you think it is, I want it checked out.

He sent me to an oncologist surgeon, who informed me it was a mass. Needless to say, I was scared. I had surgery. It turned it I had two lymph nodes taken out and it was not cancer. My surgeon said, if I had let it go, it would have turned into cancer.

Thank God your mother went with her "gut" feeling. We know what we feel and we go with that feeling.

I will be thinking of you and your dear mother.

Linda

 

[diamondfan]

Firegoddess, I am sorry about your mom and hope all comes out well.

Once again, even though I think most doctors mean to do right by their patients, we are seeing that WE are our own best advocates in health care and protecting ourselves. It is SO important to listen to your gut about stuff. I would rather "bug" and "pester" a doctor and be wrong than to be meek and let someone basically push me away from doing what I think is right. It is too tragic to let things go...better you be wrong and alive.

 

[FireGoddess]

Thank you SO much for your kind words and thoughts and your insights Heather, Linda, and Diamondfan, and for sharing your experiences. It is true - I cannot emphasize enough that you are your own best doctor in these types of things. One of the doctors my mom has seen basically said as much to her. My mom is just so upset that she has been pointing this out to her doctor for years and it has fallen on deaf ears. Even to think it would have continued if she hadn't finally decided to make them do it anyway, even though they saw no reason to do so, makes me so angry.

Her doctors are now telling her, "No, mammograms do not pick up all types of cancer." I want to run around screaming, "Then why aren't you doing the tests that WILL pick those other ones up, on a regular basis??!"

 

[Linda W]

You know that is a VERY good question. My guess it all boiil down to one thing. INSURANCE.


Linda

 

[Linda W]

oops, I mean Insurance Companies.

Linda

 

[tawn]

My SIL is an Ultrasound Tech, and she''s told me to insist on an Ultrasound every 3 years or so in between Mammograms, because Dr''s aren''t eager to send women for some reason (cost related?). My maternal Grandmother had breast cancer, a masectomy, and lived another 30 years! My Dad''s sister had a lumpectomy, and is just about to clear her 5 year mark of being cancer free.

One of my girlfriends was diagnosed 1.5 yrs ago, with Stage 4 breast cancer...3 months after her 30th birthday, and 2 months after her wedding. She had a double masectomy, chemo, radiation, and then breast reconstruction. They just bought a house, and currently, she''s healthy and doing well!

There are so many success stories and I pray that your Mom will join these remarkable women!

Good luck and take care!

 

[MissGotRocks]

I too am so terribly sorry to hear of your mother''s breast cancer. This ultrasound is news to me - it''s too bad that we have the equipment and technology to detect these cancers but the insurance companies are determining what is best for us in terms of testing. Thanks for sharing this information.

Best wishes to you and your mom - please keep us posted on her progress ~

 

[Kaleigh]

I'm so sorry FireGoddess. I knew nothing about ultrasounds until now. Nanny had a double mastectomy when she was 40. I have regular mammograms but will insist on ultrasounds as well. I pray your mom will be ok. Biggest hugs to you. You and your family will be in my prayers. So sorry, Lisa

 

[hlmr]

So sorry to hear your mom''s news FireGoddess!

I will say that a lady I briefly worked with had breast cancer, and she said that a clean bill of health via a mammogram means nothing. She had insisted on an ultrasound because breast cancer runs in her family and she felt something wasn''t quite right. Thank goodness she did because she had to have her breast removed but she is doing fine now.

I think it is great you are bringing this to women''s attention. I am sending my positive thoughts and wishes to you, your mom and family.

Heather

 

[mrssalvo]

Oh FG, I''m so sorry

. I don''t really no much about Breast Cancer, but wanted to send my prayers and support.

 

[monarch64]

I just did a search on "detection of breast cancer by ultrasound" and found tons of articles. I''m wondering at this point WHY, seriously, has this information not made huge headlines, and WHY most of us hadn''t heard anything about it!? From my few minutes of reading, I gleaned that ultrasound is not dangerous, and is actually more cost-effective than relying solely on mammograms, clinical breast exams, and self breast exams. What in the heck is going on here?

During the last two months of training with a team of women from my gym, and all the talks we''ve had about breast cancer awareness, you would think ultrasound as a method of breast cancer detection would''ve been mentioned. Nope. Not once. It will definitely be mentioned by moi this Saturday, though, that''s for sure. You''ve lit a fire under my behind, Firegoddess.

On a separate note: Firegoddess, do your parents have a good support system of family and friends where they live? It''s so important to have people around who your parents can count on just to talk to, or help out when needed, even with little things while your mother is being treated. During the times when you can''t physically be there with your mom, phone calls and letters or emails will certainly help. When my dad was in the hospital during his treatments, my mom made him a photo album of pictures of happy moments in his life--us kids when we were little, fun pictures of him when he was younger and when he was a kid, etc. Whenever he got down, she''d take it out and they''d flip through it together and it would kind of take his mind off of what was happening to him by talking about happy memories. My mother was very vigilant in the hospital--she didn''t let nurses or doctors get away with anything. If they said they''d be by to see him at a certain time, she''d be a pain in the you-know-what if they were late until they did come by. Etcetera, etcetera. Education will be key for your father--if he''s the kind of man who needs to feel in control of a situation he will be her strongest ally. Encourage him to do lots of research and be active and involved in your mother''s treatment if he will be the one going through it with her.

Hope this helps.

Heather

 

[kbaker]

First of all, breast cancer SUCKS! My mom was diagnosed with stage IIA breast cancer in Dec 2004 and it ended up being a horrible ordeal. Every day you need to get up and FIGHT this nasty disease. Right now, after surgery, chemotherapy and radiation, she is on tamoxafin and has terrible side effects. Even thought she caught it early, it continues to affect our lives every day practically. I have done the Breast Cancer 3-day and Race for the Cure and those events have given me hope and allowed me to participate in something positive.

Unfortunately the 1 in 8 statistic is no joke. I have several friends whose mothers are currently battling the disease and know even more people who have lost loved ones to it. A co-worker was 30 and breast feeding her new child. Of course found a lump and was told it was jut hormone related. Well guess what, it wasn't and by time of diagnosis she was stage 4.

LADIES--- we need to stay strong for our loved ones and join support groups, raise money and most importantly AWARENESS. If I had a dollar for every woman who tells their Dr. that they have a lump and told it's probably nothing I'd be rich. We need to be in charge of our own health and advocate for change!
Good Luck and good bless

 

[AsscherGirl]

FireGoddess - I don''t have really anything to say about breast cancer, but I just wanted to say that I am so sorry to hear about your mom. I hope that she receives the best care possible & that she will become a success story. My thoughts are with you & I know you''ll have the strength to be there for your mom in every way you can.

 

[decodelighted]

I''m so sorry to hear about your Mom''s situation! SO GLAD she stuck to her guns & demanded more tests though.

I don''t have much experience on the subject and can only say that my heart goes out to you and your family and you''ll def. be in my thoughts!

THANK YOU for posting about this -- I know you''re looking for support & info more than anything -- but you''ve SURELY opened a lot of eyes about the ultrasound vs mammogram & may have even saved other families some pain in the future!

CYBER HUG!!

 

[AndyRosse]

Oh FG, I''m so sorry to hear about your mom. I really have no insight to give you, I just wanted to let you know that she and your family are in my thoughts and prayers.

 

[Small]

FG...I''m so very sorry to hear about your mother. That has to be so frightening. I can honestly say that getting cancer is one of my worst fears

My grandmother was diagnosed in her 40s with breast cancer. All of the females before her except her one sister had all succomed to this horrible disease. I''m proud to say that she did beat the disease. She had a double mastectomy and lived a long life. She is gone now but was cancer free over 20 years when she died of an unrelated illness.

Just wanted to share a success story. I really wish your mom the best.

 

[FireGoddess]

Seriously, if even 1 of you has learned something from this it makes me feel better for having to go through it and put it out there. It''s your life we''re talking about. The fact that Monarch could pull up all that info in 5 minutes makes me angry that ultrasounds aren''t standard procedure, even every 2-3 years if not every year.

Tawn - Thanks so much for those success stories, particularly your friend with the stage 4 prognosis. It''s always good for the spirit to hear these things because I do believe that attitude can only HELP you fight this thing. That''s what I''m trying to tell my mom. I''m thinking of trying to look online for some ''positive attitude and cancer'' books - she''s freaked and didn''t even want to read the komen.org site (I mean, y''know, hearing the cold hard facts that you have x percent of living 5 years from now is hellishly scary, so I think that needs to be balanced with some holistic attitude stuff.)

MissGotRocks - Thanks so much for your good wishes, I will keep you all posted for sure. This board is such a great support, even though I don''t know any of you in the *real world* it helps to have you guys here!!

Lisa - Thanks for your thoughts and prayers, and I''m glad you know to kick some doctor butt and get those ultrasounds now. Nanny is truly an inspiration in so many ways!

Hlmr - Thanks for your sweet words - and for sharing your coworker''s story - it truly frightens me how many people are ''saving their own lives'' instead of their doctors. One oncologist told my mom the other day, "Gee, you must really have an angel sitting on your shoulder to have gotten the ultrasound because your mammograms show nothing." My mom goes, "No, the angel is me and if the doctor had listened to me in the first place, maybe we wouldn''t be here."

MrsSalvo - Thanks for your support and prayers. I truly mean it when I say that even if people don''t have any firsthand experience, just knowing the support is out there really, truly helps. A lot.

Monarch - I can''t thank you enough - where to start - It really makes me feel happy to know that the ''fire''s been lit under your behind'' and you will help spread the word. I seriously am going to contact komen.org. This needs to be out there and with all the articles out there, I am so stinking mad that most of us have heard NOTHING about this. Fuming. About my parents - the support system is moderate. A sister of mine is local. They tend not to socialize much but I do hope they join a local support group. I will suggest it. I will certainly do all I can, including the things you''ve said...thank you so much for the photo album idea. It''s a great one. I do appreciate you giving me your firsthand experiences and advice.

SoCalGirl - It does suck. Totally sucks. I have tried to tell my mom already that her number one job is to keep herself as HEALTHY as possible. She needs to eat. Even if she feels nauseous, try to down a meal replacement drink. Anything to keep your energy up as much as possible and keep your body in fighting shape.

Danielle - Thanks so much for your good thoughts. I too hope she becomes a success story and not only a case to learn from. Can only hope and pray and be strong....

Deco - Thanks for your support and your thoughts, and for your kind words about posting this. It is a painful thing to go through and really hard to write publicly about, but seriously, this CANNOT be allowed to go on!!

Cyber hugs to all, really and truly...thanks.

 

[FireGoddess]

Rascal - Thanks so much for your concern and thoughts - you guys really give me strength!!

Small - Thanks for the success story - every single, solitary one helps that much more.

 

[KristyDarling]

Firegoddess - I''m so sorry to hear about your mom''s cancer....and just 3 weeks after a clean mammogram! Of course you''re outraged...I would be screaming and hollering, too. I for one had NO idea that ultrasounds could detect what mammograms can''t. I was under the impression that yearly mammograms alone were good enough. The breast cancer movement has been touting mammograms as their top weapon for years now, why is it that we''ve heard zippo about ultrasounds?! I share your frustration. Please know that we''re all thinking of your mom and the rest of your family. Stage 3 might sound scary but it''s certainly not definitive....my aunt was diagnosed with Stage 3 breast cancer 2 years ago and she''s doing really well right now. I''ll be thinking of you all. Hang in there FG.

 

[Mara]

FG I'm sorry to hear about your Mother...cancer is very scary and it is upsetting when you realize that the tests they give you are not even 100% helpful. My prayers are with you and your family, hang in there.

 

[movie zombie]

i''m very sorry to hear about your mother.

often times new procedures or more effective procedures are not implemented because insurance companies don''t want to pick up the cost. it would be an interesting question to put to the powers that be.

best wishes to you and your family.

movie zombie

 

[tawn]

Date: 5/3/2006 11:52:08 PM
Author: FireGoddess
Seriously, if even 1 of you has learned something from this it makes me feel better for having to go through it and put it out there. It''s your life we''re talking about. The fact that Monarch could pull up all that info in 5 minutes makes me angry that ultrasounds aren''t standard procedure, even every 2-3 years if not every year.

Tawn - Thanks so much for those success stories, particularly your friend with the stage 4 prognosis. It''s always good for the spirit to hear these things because I do believe that attitude can only HELP you fight this thing. That''s what I''m trying to tell my mom. I''m thinking of trying to look online for some ''positive attitude and cancer'' books - she''s freaked and didn''t even want to read the komen.org site (I mean, y''know, hearing the cold hard facts that you have x percent of living 5 years from now is hellishly scary, so I think that needs to be balanced with some holistic attitude stuff.)

MissGotRocks - Thanks so much for your good wishes, I will keep you all posted for sure. This board is such a great support, even though I don''t know any of you in the *real world* it helps to have you guys here!!

Lisa - Thanks for your thoughts and prayers, and I''m glad you know to kick some doctor butt and get those ultrasounds now. Nanny is truly an inspiration in so many ways!

Hlmr - Thanks for your sweet words - and for sharing your coworker''s story - it truly frightens me how many people are ''saving their own lives'' instead of their doctors. One oncologist told my mom the other day, ''Gee, you must really have an angel sitting on your shoulder to have gotten the ultrasound because your mammograms show nothing.'' My mom goes, ''No, the angel is me and if the doctor had listened to me in the first place, maybe we wouldn''t be here.''

MrsSalvo - Thanks for your support and prayers. I truly mean it when I say that even if people don''t have any firsthand experience, just knowing the support is out there really, truly helps. A lot.

Monarch - I can''t thank you enough - where to start - It really makes me feel happy to know that the ''fire''s been lit under your behind'' and you will help spread the word. I seriously am going to contact komen.org. This needs to be out there and with all the articles out there, I am so stinking mad that most of us have heard NOTHING about this. Fuming. About my parents - the support system is moderate. A sister of mine is local. They tend not to socialize much but I do hope they join a local support group. I will suggest it. I will certainly do all I can, including the things you''ve said...thank you so much for the photo album idea. It''s a great one. I do appreciate you giving me your firsthand experiences and advice.

SoCalGirl - It does suck. Totally sucks. I have tried to tell my mom already that her number one job is to keep herself as HEALTHY as possible. She needs to eat. Even if she feels nauseous, try to down a meal replacement drink. Anything to keep your energy up as much as possible and keep your body in fighting shape.

Danielle - Thanks so much for your good thoughts. I too hope she becomes a success story and not only a case to learn from. Can only hope and pray and be strong....

Deco - Thanks for your support and your thoughts, and for your kind words about posting this. It is a painful thing to go through and really hard to write publicly about, but seriously, this CANNOT be allowed to go on!!

Cyber hugs to all, really and truly...thanks.

Just wanted to add that 30-yr old friend went to a dietician, and said that made her up lists of good foods and lists of bad foods, and all sorts of advice for nausea, etc... and that it made a lot of difference during her treatment.

But...loving your mom is the best medicine that you can personally give her! It''s a scientific fact that people who are loved heal better!

Take Care!

 

[blodthecat]

Hi FG,

I am really sorry to hear about this, but perhaps i can share with you what i know.

I work in a Radiology Department (in the UK) we have a large breast unit and screen thousands of women every year.

Unfortunately, mammograms can not give a 100% positive or 100% negative result. They are merely a black and white projection of the breast tissue. Many factors are at work here, for example some women have very dense breast tissue (especially younger women) and also the site and nature of the lesion is a factor.

In the UK there has been a drop in consultants wanting to specialist in this field of radiology, simply because of the fear of litigation because mammography is not an exact science. For this reason all mammogram films are reviewed twice, by two different doctors.

So mammograms will not detect every cancer, and this seems to have been the case with your mother. I know when something like this happens, we always need to find someone to blame, but in cases like this no one is to blame. Despite its failiure rate, mammography is detecting thousands of cancers every year and saving lives. Which is better than having no screening program at all.

In terms of early detection, no one knows your body as well as you do! Regular self examination is important. Consult your doctor if there are any subtle changes in your breasts, ie lumps, discharge, changes of the skin or nipple. As you said, your mother knew there was something not quite right....and she persued it further.

The best way to help your mum now is not to panic and take this calmly...one step at a time. The ladies that cope with surgery and treatment the best seem to have a very positive frame of mind. It really does help.

I know this is a very private matter for your family, but it is so good that you have posted this, as it raises awareness and gives people the chance to discuss their worries and fears. Thank you for sharing this with us on PS.

Sending you a big {{hug}} and positive vibes!

Blod

 

[blodthecat]

Just one more thing...

In terms of screening programs (in the UK) it is about screening as many women as possible, cost effectively. Other examinations, such as ultrasound can be used in younger women where the breast tissue is very dense or in conjuction with mammography. Or MRI as your mother had.

However, MRI are very time intensive and exepnsive, and in the UK this would only be carried out when clinically indicated, rather than routine.

 

[Lorelei]

FG, I am sending out my support and prayers to you, your family and your Mom. I know how frightening having a loved one with cancer is, but hang in there, many women have beaten it.

 

[eks6426]

FireGoddess--I''m so sorry to hear that your mother has been given the big "C" diagnosis. It must be horribly difficult to be so far away from her at this time. I don''t have personal experience with breast cancer, but my first husband did die of cancer at age 33 and now his father (my former father in law) is dealing with lung cancer. If I had one piece of advice it would be to make sure your mom gets at least 2 (preferably 3) different doctor''s opinions on what to do. The doctors should not be all from the same hospital or clinic. I''d make sure to hit one of the main research hospitals for one of the 2nd opinions. My first husband just blindly followed the path that the local doctors recommended. But the research hospitals were more advanced and I''m still convinced to this day that if he would have been willing to go out of town for that 2nd opinion he might still be here today.

I''d also look into making sure she is eating well--there is lots of evidence to show that diet can help slow down (or stop) cancer growth. I took classes in how to prepare meals that help cancer patients and it was amazing.

 

[Sundial]

FireGoddess I just saw this thread. I don''t have any advice or experiences to share, but I just wanted to express my sympathy to you. I am so sorry to hear about your mother''s diagnosis and I hope and pray for the best for her. Thank you for letting us know about the ultrasound!

 

[FireGoddess]

Can''t thank you guys enough for the support...

KristyDarling - Thanks for your kind words and for telling me about your aunt. These success stories are really helping me, because most of the time I''ve spent online has been looking at diagnoses and treatments and projections...and not the survivor stories. Those are really important to balance out all the scary stuff.

Mara - Thank you for your prayers and thoughts. It is scary that all the things that have been ingrained into us are NOT the be-all and end-all. They do tout that breast cancer is completely curable with early detection - so they need to give us ALL the tools to do that!!

Movie Zombie - Thanks for your sentiments and best wishes - it is an interesting question as to why this hasn''t been implemented, although we all seem to know the ''likely'' reason. Having it hit this close to home makes that reason not acceptable to me, so I want to do something about it!!!

Tawn - Thanks for pointing that out about the dietician. I am going to do some digging to find out more info - this is a great idea, and may help give mom some control back - at least about something - to feel like she''s actively doing something for herself.

Blod - Thanks for the professional opinion and elightenment. I do wish this was more widely known to the public - that mammograms do not detect all forms of breast cancer because all I''ve ever heard is ''get the mammograms and do the self tests.'' But a woman''s life cannot be measured in terms of how much money it costs do do a freaking ultrasound, and I am on a mission to be damn sure that it stops here. Insurance companies rake in tons of money because most of the time nothing is wrong...but they darn well better be there when something is wrong, or to make sure nothing is wrong!!!

Lorelei - Thanks for your support and prayers....it helps to know there are lots of requests going up there to the guy in the sky, whatever anyone believes him/her/it to be!!!!

IslandDreams - Thanks for your kind words - I have recommended the second opinion thing to her. She seems bent on the current doctors because they come very highly recommended (another doctor from another place told her he''d send his wife and mom there, so she''s confident in that regard) and they seem to be well renowned. I would like her to get a second opinion anyway, so I''m working on that. Thank you SO MUCH for mentioning the classes for food prep for cancer patients - my dad loves to cook and this may be a way he can do something and feel helpful to her, other than just being there. I am going to pursue this!!!

Thank you so much, and hugs to all...