Odds of 2nd breast cancer
Today I went to my surgeoun and all was good. We discussed having my other breast removed. She said I could or I could keep it. She was nice aough to say "your biggest concern is the amount of nodes and that coming back not a 2nd breast cancer."
She said the odds of a 2nd are less then the cancer coming back full blown and even if it it did come back in the other breast we would catch it early and take care of it.
First I was like-what a b_ _ _ _ _ for implying that I will probably die from my first cancer not another one. She really minimized my need for getting rid of the other.
Then to say they would catch it early-well thats what they said the first time and didn't.
Has anyones surgeoun suggest not having there other breast removed?
Comments
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Pure, this is my issue too. I have asked the same questions and get that attitude, you described. The stress I went thru last month with my first mammo since surgery was overwhelming. I worry about either a new cancer or a recurrence in the remaining breast, and want to have a serious conversation with my docs about possibly removing it. Tomorrow I will see my onc for my Zometa infusion and i want to discuss this with him. I'll let you know after tomrrow what he said.
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Pure, my surgeon did not try to influence me one way or the other, but said he would support my decision. It's a very personal choice to make, not necessarily based on the "odds". (I hate using that term...makes me feel like bc is something they play in Las Vegas.)
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My surgeon said that I had a 1.5% chance of it appearing in the other breast....cumulative to be 15% in 10 years. I was 50 at diagnosis. He thought it was extreme to remove a healty breast. He did say that If I had come back BRAC 1 or 2 positive he would advise to do it.
The Breast Doctor who oversaw my treatment thought that I should remove the healthy breast because it was a 10+cm Lobular Cancer and the sent. node was full of cancer.
The Plastics Dept said that removing both, since I am a 36D would make reconstrcution easier... (for the Doc?)but the breast surgeon said that a good PS could match the other with a DIEP type surgery.
I had rads and am not sure about reconstruction yet. I have a prosthetic for now. I need to let my rad skin heal longer and I guess I want to see how the first few follow up appts. work out...if the Tamox is working etc. before I decide the recon. issue.
I am glad for intimate reasons to have kept the healthy one. I think if I worry, I worry more about mets than it being in the other breast...maybe it is because I now know what it is like to have a masctectomy, I don't know...My team was from the MAYO Rochester MN.
I do think that my team felt that if and when the mets show up in places other than the opposite breast was more of a threat to survival than a 2nd breast cancer. As for the catch it early...I had mammograms for 10 years and it was not found...not until my breast changed in appearance did I get a referal for ultrasound.
I think that if it something that gives you peace of mind personally then that is an important part of the decision as well as the input of the Docs.
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My Oncologist said that I needed to quit worrying about it coming back in the breast. She said she could just about guarantee that if it came back it would come back somewhere besides the breast. I think they know that our odds show mets is more likely. I agree with the oncologist and really dont worry about the breast but am terrified of the thought of mets.
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My onc actually said it was totally unnecesary to remove the healthy breast but was not suprised and supported me when i insisted that she remove the second as well.
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My surgeon and oncologist both objected to my decision to have a bilateral mx. However, I had had regular mammograms and did not catch the first time until a node turned up. My particular variety was sneaky and fast, and I had lost confidence in the diagnostic system. All of that said, I was large busted and wanted symmetrical strength and visual effect, so there was that too.
Regarding your surgeon's remarks, my doctors said exactly the same thing. Of course that led me to insist on several detailed and time consuming discussions of odds, risks, studies, precision, and lots of other things they don't really like to chat about. . . finally they printed the adjuvant online results out for me and don't bring it up any numbers anymore.
Jen--my objective was to reduce all the odds and risks to as low as possible, so for me, the relative risk is meaningless. Having your other beast removed does not alter the course of your first diagnosis, your first diagnosis does not alter the course of a second. So to me, one has nothing to do with the other.
But that is just my way of looking at it.
Warmest,
Cathy
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Pure,
Unless you are positive for one of the BRCA genes or have a strong family history (gene present or not) removal of the healthy breast is unnecessary. Thats what my onc told me.
Remember, even if you do remove the breast, it doesnt gurantee you 100% that you wont develop BC in it. You will lessen the odds greatly but not completely.
You mentioned about screening/mammograms in the healthy brest.....and catching "it" early if it was to happen. Now that we have all had BC, we are watched very closely. As proposed to pre BC. We go for mammos, MRI, digital mammos, we do self breast exams and so will your onc at your visits. You WILL be watched. PLUS....you are ER+ and will be on anti hormones which will reduce the risk of developing BC in the healthy breast by about 50%. AND....you have also expressed interest in an ooph. that will reduce the chances even more. Do you see where Im comin from?
Im not against removing a healthy breast....but theres is a lot of talk now that for the majority of woman...its not necessary.
I agree with your doc, mine said the same, the biggest risk you have is your original BC recurring. NOT developing a new one.
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OK, I have had this discussion too - and also been told the cancer I have to worry about is the one I already had.Yep, thanks for that.
She didn't recommend it, but I do think if I wanted it off she would do it. Right now I am just done with "stuff" but I may change my mind later. I get an annual MRI, U/S and Mammo, so an hopeful anything would get picked up early. But I too had cancer missed before, so it worries me.
She also said having my Ovaries out cuts the risk of a new BC by 70%, and Arimidex would "theoretically" lower that risk too.
She said if I had had ILC she would recommend it, or if I had a family history.
My Onc said some women just like to get the other one off so they don't need to worry about Mammos etc.
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My remaining breast has a lot of calicifications that they were watching over the entire year that they missed my cancerous tumor in the other breast. That's why I don't feel I can trust that my remaining breast may develop a tumor too.
Barb
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We get lots of opinions from doctors regarding our decisions, but I honestly do not know what to think of them. I heard strong and convincing opinions both ways. Then I came across a statistic that said the group which showing the biggest spike in choosing bilateral mastectomy is female medical doctors. Interesting.
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There is a risk every time you have Surgery - people do die from things unrelated to their health issue. So I think some Surgeons are reluctant to "recommend" a procedure, but would happily do it if requested.
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Pure, my doctor was totally against removing the healthy breast. I am not BRCA 1 or 2. I don't think it is common that people have second breast cancers. If it were me, if I had repeated mammograms, repeated sonograms and callbacks for calcifications, then I would consider it. You are being scanned and a PET scan would show anything over 1 cm. I hope that helps. Maryiz
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Jen,
My onc said the same thing, even though I did have Lobular. I just wish I knew that I had sooo many nodes involved, or I would have told her to take the other one off at the original mastectomy. The original biopsy showed ductal and she said to me "I can not beleive that you had so many nodes. you must have had this in your body for 8-10 years." How nice to hear that!!
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My oncologist also didn't think I should have a prophylactic. He was dead set against it.
But I did it because they didn't catch the other side very early, because I had ILC, because I didn't want to risk having an SNB on the other side along with the possibility of lymphedema on my dominant arm, and finally because the idea of losing the breast was easier for me to deal with than having more chemo/rads should they find something on the other side.
When I had my first mastectomy, the other breast was clean. By the time I had my prophylactic 10 months later, I had multifocal ALH on the "healthy side". Onl one spot of the ALH showed up in the mammogram done just before my prophylactic mastectomy. The rest of it invading my breast tissue did not.
I believe that I stayed a few steps ahead of the beast.
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Even though ALL my doctors were in disagreement whether I should have both removed during pregnancy, they ALL did agree that I should remove both. They said because of my age and I guess my history, my maternal GM had ovarian (I don't have any BC in my close family history).
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Lexislove, you said even if you have the breast removed it doesn't guarantee 100% you won't develop breast cancer in it. How could that be? I don't understand that. Don't they totally remove all the breast tissue? About removing the second breast ...my surgeon also said the odds were very low for cancer in the second breast and is trying to discourage me from the second mastectomy. On another issue...why don't they do routine ultrasounds? My last mammogram, 10 months ago totally missed what turned out to be a 3cm mucinous carcinoma seen by ultrasound after I felt the pain, then felt the lump. Unfortunately, I relied and had all the confidence in mammograms and neglected monthly self exams.
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Julia,
The surgeons do try to remove as much as the breast tissue as possible. But it is impossible to remove it all unfortunatly. Breast tissue is just not THE breast. It also extends up towards the collar bone region and towards the inside of the armpit. Same goes for the second breast. Breast cancer doesnt have to develop in the breast. some woman find a lump in their armpit...others around their clavicle area. Most find it in the breast though.... Does this make sense?
You can ask for an ultrasound with your mammograms. The docs will probably say ok due to the fact that your mammogram didnt pick up your tumor. Also, ultrasounds are good for woman with dense breast tissue. I myself, did not/do not have dense breast tissue. My tumor showed up right away, no iffs ands or butts about that.
Another reason why I decided to keep my healthy breast...I am very aware of it. I know what feels right and what doesnt. If I was to have an implant...I wouldnt know WHAT to feel for. What is normal...ect To me an implant seems like it would just get in the way of self exams and well...you cant have mammograms on a breast with an implant so.....then what?
Its a lot to think about...
BTW, I relied on the doc that told me not to worry that I was too young for BC. Learned that lesson.
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My doc said there is a 20% chance of getting another breast cancer. If I remove the breast the chance is 2%.
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i like straightforward oncs.
no sugarcoating for me... please. I let my docs make the decisions.. they know a lot more than I do... that's how i think.
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Im with you apple.
Pure,
that sounds about right. So....I always look at the glass half full. 80% you will not deal with a new BC again. Considering, the average woman who has never had a BC diagnosis, her risk of BC is 12 %.
Im just trying let you see things from a different angle. Also, there is no need to rush into a decision. Especially going through treatment ect...chemo.
Again, you have to do whats right for you.
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Lexislove-Good Point I actually in my dream world would like the diep done on one breast and the other breast made smaller but keep it. But so many people feel I should take it off. Its such a hard decision. Did you schedule your oomph yet? I need to do that this week:(
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So many people feel you should take it( Breast)off?
Tell them to take their own off...make the decision for yourself. dont worry about symmetry either. I had a lift reduction on the healthy one...looks great! Dont need to wear a bra, if I want. I also went smaller than my original D/DD cup. A lot better.
I scheduled my ooph for July.
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Thank you for the explanation, Lexislove, that does make a lot of sense. How could they possibly get every single cell in such a large area? That's funny, tell them to take their own off! The whole system stinks, I really think that stem cells will eventually get to the root of the matter. Hope and pray they can get on that asap. Good luck with your ooph, mine was a total success, no discomfort, in fact after ~1 month there was hardly a mark.
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Thank you Julia.
Im kinda looking forward to it. Not the surgery, although Ive heard from so many that it is quite "easy". but, just to have these estrogen time bombs out of me.
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I might be the only different story.. so I will give it to you.
My BS ( about my age) and my Onco ( about my age.) BOTH agreed that I was RIGHT in wanting a bi-lat.
They said, at my age then 40.. it would be best to take them both. I was Her2+ and it grew FAST in the cancer breast.
Also. they both agreed I was still so young and wanted to look my best. Symmetry was important and they felt this too.
I do feel better having very little to examine monthly. Just skin, scar and armpits.... But my beautiful implants cannot get cancer.
I think my Cancer team is different on this topic. God Bless!!!
PS, I also had cancer in my nodes. So my doctors are more worried about the rest of my body more than the skin and scar in the healthy side. This is a given.
Sweety... YOU are the ONLY one who decides if you have a bi-lat or a uni. NOT your doctors.. NOT your family... NOT us.... JUST YOU! You WILL make the right choice for you.
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Jen....I had a bilat at the recommendation of the two BS surgeons that I interviewed....my onc also felt that this was prudent for me...it was also on the top of the list of questions that I had for the BS...they just brought it up before I got to ask it, so it was an easy decision....We knew that the BC had spread to the lymph nodes even before surgery as it lit up on the MRI after initial Dx and that let to more biopsies....the prophy side turned out to be ALH....I was just shy of 50 at time of Dx.....Now that said, I have no regrets about having a bilat.....but I do miss the sexual/sensual feelings that my breasts/nipples provided....so that is something to think about.....but ultimately, its your body and you need to do what gives you peace of mind.
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I had bilat mx even though the cancer was only on the left side as far as we knew at that point. I felt at the time it was what I wanted to do. After the mx, I got the path report back and learned how extensive the cancer was and that there were 9 pos nodes too. The right breast was healthy. I had tried to predict how I'd feel about removing a "healthy " breast before surgery and now I was faced with that very outcome. Somewhat surprisingly, I was still glad I went bilat. No regrets. I did what I hope will get me further down the road from breast cancer and accepted it. For me the decision came when I was told I had bc. You could drive yourself nuts trying to sift through medical statistics about it. In the end it's the same old story we always get: there are no guarantees either way. There are too many complex feelings and emotions involved for anyone to advise you one way or the other about it. So you gotta do what you feel is best for you then move forward. Best wishes to you on your decision.
Annie
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Pure, I recommend you read this article pubished on the NYT talking about exactly that - the option to remove a healthy breast. I'd recommend you read the article as well as the comments - a lot of women talk about the reasons they did it or not. Reading it may help you decide what to do, and at the very least, it will help you with the reasons why one would do a bilateral or keep the healthy breast.
Good luck with whatever you decide!
Marcia
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Just a word on breast tissue left after a Mx - I have read that about 10% remains. So there is still a possibility of getting a local reoccurance, even after a Mx.
A girl I went through Chemo with had had very early stage cancer and had a Mx and implant, the cancer grew back, she wasn't having mammos and no one discovered it until she was Stage 3C. So, it is possible. If you have implants you might think about still getting an MRI...
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My BC surgeon suggested just taking the right side and "do more testing" on the other (after them screwing up with my MRI results in the 7 weeks while I waited for surgery). At that point I had had enough. I told him in a very polite, professional manner that although I respected his professional opinion, my anxiety level with having to worry about the other side was too high, and that I wanted the left side removed too. He of course agreed to do both. I believe insurance wise, once you have it in one side if you choose to have the other removed they HAVE to cover it. Otherwise they would be liable later if you DID have cancer show up and had requested to have it removed and they denied you.
Take care,
Sharon
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