TRIPLE POSITIVE GROUP

Hi ElaineTherese, I probably put it wrong a bit, mastectomy is offered when lumpectomy is not possible at all, for the obvious reasons. One can also be offered mastectomy in case of recurrence or even prophilactically if it is proved that bc is hereditary. I could not opt for that in any clinic though because mine is not even in the breast itself but in the tissue above the breast. Well, Sweden is a small country and the system is what it is but the treatment is the same as far as I can see. In US you have another health insurance system and the country this large and diversed it is hard to compare, not exactly the same scale when it comes to research t ex. Cherry

I agree HapB. If I had to choose between losing a leg or getting rads, I would have taken the rads. I need my leg to walk. However if I had cancer in the my ear lobe and was given the same options, perhaps I would rather remove part of my ear than radiate. The point being, it should be my choice. Patients should be given all the facts to be able to make an informed decision. We all have our own opinions on what is "least" or "more" aggressive". To you "more" means a more involved surgery, to me it means rads. If I would have needed them, I would have done them, but I had a way out and my doctor should have been the one to explain that to me.

My reconstructed breast are much nicer than the diseased ones they took off, but I seriously considered not reconstructing at all. I much admire women who comfortable going flat. In hindsight, I probably didn't need to reconstruct because the Arimidex has taken away any interest in sex. So I have pretty new boobs and I don't even feel like showing them to my husband. Oh well, that's a whole other rant.

You are right, Cherry, I have heard of others have tumors in what we would consider to be outside the breast area. No one ever told me to check those areas during my monthly self exams and I don't remember a doctor ever checking those areas during a yearly breast exam. I do check out the whole chest area now because I know that even though I had a BMX. there is always some breast tissue remaining and I could have a recurrence.

I object to the bias I perceive in articles about women choosing mastectomies and prophylactic mastectomies. I do not accept the notion that certain women woman are ill informed, less educated or living anywhere but on the two coasts and accordingly are predisposed to less informed decisions. I could make an equally pejorative statement that Lumpectomies are encouraged by doctors because the surgery is less costly.

Mammograms are not an effective detection tool for women with dense breasts, a fact of which I was unaware until I was diagnosed with a nice size IDC tumor and DCIS. Twenty plus years of callbacks and anxiety from mammograms. Goodbye to all that and good riddance.

Debiann, we have the same diagnosis. Six years ago, my breast specialist said I fell in the gray area. While survival rate was the about the same for either, recurrence rate was a little less with mx. She also said that assuming there was no node involvement, (snl was done during the bmx), I should not need to have radiation. I then met with the radiologist and had a conversation with him and he said the same thing.

What they all said however, was that it basically boiled down to my choice. With my diagnosis, there was no great difference in my choice.

My plastic surgeon recommended a bmx from esthectic reasons. My breast specialist liked the bmx idea (or unx) idea just because she thought rads was a good thing to keep in my pocket if there were to be a recurrence.

Ultimately, I chose BMX for the following reasons...I was 55. If I had been younger with perky firm breasts, I might have thought otherwise. I didn't want to have to worry about mri's and mammorgrams on the other side every six months. I had always been smaller until after my second child then I was pretty big. I never learned how to adjust to that. I wanted a smaller more athletic look (although I am not at all athletic lol).

So, ultimately, I decided on the BMX. Still happy I did, although, I ended up with a pseudomona infection, had to have the expanders removed, then replaced, tons of antibiotics, iv and otherwise, which led to an allergy to sulfa now. But, once all that was resolved, they have been fine. I will say, I miss the sensation when we are fooling around, a lot.

I had thought about some cosmetic improvements as there have been some small chages over the last six years. Then I followed along with Special K's story on her updates and decided enough was enough. I saw my PS a couple months ago and he said don't tempt fate lol.

Debiann, I had an extensive exam in January, not only an mammogram but also US. Now I understand that they could not get this tumor into the machine but they even missed it in US. I remember the doctor sitting there with a bored face and just moving the handle looking in the screen. Then she stopped and told me that she cannot see anything and the pain I was experiencing before must have been hormonal, I was free to go. I do not remember exactly if she moved the handle as high up as my armpit, I did not think about it. Otherwise she would have not missed a mass that by the end of June was 1,5 cm large. When I was diagnosed my clinic checked this US picture series and they did not see anything either. I did not asked about the pictures' location, when I tried to ask the doctor she told me, well, what can I say, we have looked at those and did not find anything. Is it possible for tumors to grow so fast, I don't know.

Hi Laurie,

Now I am so new to this and I am sorry that you have to deal with that years after your diagnosis. I do not know what it may be but there is a number of benign conditions as well. My suggestion for you is to write a post under Not Diagnosed but Concerned, it will probably result in more answers for a separate thread. I really hope it will go well for you, hugs, Cherry

Hi Hapb, it was my understanding from my surgeon that is is not yet confirmed that the bc pills cause cancer. We know they'd feed an estrogen positive cancer. But cause it? Not sure. And apparently low dose pills don't seem to raise risk (which most women are on). I'm just writing this as I think it would be so easy for many of us to feel guilty about being on the pill. I believe it needs to be a cocktail of factors, as the better part of western society is on birth control and women with huge risk factors are breast cancer free

If it is a cause, then wow does that upset me. Funny, as when I was taking my last two year round of pills, I had this little voice inside questioning whether or not I should. I've always had this niggling worry about that right side.

Very dense breasts raise breast cancer risk 4-5 times. Every woman out there has a one in 8 chance, so think about our risks being dense breasted - massive. I am off the charts dense breasted. So, I think that, along with other factors (my age having my first child, several failed pregnancies, bc pill, etc) colluded.

I still have haunted thoughts about what I would have changed. But I realize that is absolutely not fair to myself....

Hapb, I drank alcohol. So it's easy to make a list of 'sins' and be hard on myself. But while hormones are of course at the foundation of this cancer, I can't believe that taking a low dose pill on its own did this. I guess what I'm saying is that it's very complicated, we all have a unique genetic map, and there are so many factors. For the lifetime smoker who gets lung cancer, three is thar direct link to smoking. I don't believe it is that way with breast cancer

posey...i just want to clarify my post. I wasn't saying that my BC pills caused my cancer. I just meant that my hormone positive cancer was being fed by them. I just wanted to clarify. No one should feel guilty about anything they have done! It's just bad stupid luck :-( I hope I didn't upset anyone....

thx Posey!

I keep following your discussion on this subject regarding the pills and postpartum bc. Now I also red on the web about it, I had no idea that the risk was so high, no one ever told me that, I never googled it before either when I was trying to conceive after 40, I just thought I could do it because I did not have any problems to conceive earlier. It also says that prognosis for postpartum is not good. I know there is no point but I do blame myself, I wish I would had let it go, sometimes I even did say to myself it was enough, I had my two children, but I always came back to that I just badly wanted another one. I also got prescribed birth control pills in December but saw that bc was one of the risks and decided not to take those. If I had, I would have now thought that it was the reason behind my bc. However I was pregnant and developed this lump within 1-2 years of my pregnancy, which one of them caused it I do not know.

I have been thinking about this a lot since I got my diagnosis and started to read about bc and all possible cause. I know it is pointless but some part of me wants to understand, I do not know why, maybe my mind is trying to cope with bc or any other problem in this way in order to get some closure. I just wonder (did not find on the internet though) if ER levels during the early pregnancy and those while taking birth control pills are the same? Is it possible that I had still got Her2 positive but hormone negative cancer if it was not for those pregnancies or if I just could avoided the whole thing. On the other hand I used to read a lot on the forums where women over 40 were trying to conceive over time, some taking ovulation pills, some going through the fertility treatments, all possible kind of supplements. Some of them had several miscarriages behind them. None of them had ever came back to the forum and said now I got bc. It is bad luck as my onc said.

I've been off this page for a long time, so I hope my question hasn't already been answered, is anyone on the new (FDA approved July 17) Her2, post Herceptin drug Nerlynx (neratinib)? My MO thinks I should try it and I have a ten year old and 13 year old twins, so they need me, but the side effects sound like chemo and I do not want to go through that again (Nausea, Diarrhea, Nail issues, fatigue, etc). But, I also don't want my cancer to come back, because if it did I'd be back in full chemo. I'm very conflicted right now.

Also, can you do a search within a specific board? I would have done that, but I don't see that option. I searched on the home page and just got all the articles from Treatments and Side Effects, nothing from the forums.

KNM, interesting. I haven't heard of this new drug! I'm in Canada and that means we'll be behind on this, but if I were a candidate, I'd get my butt down to the US and get it. I personally have zero conflict over it. It's such a personal decision, but my own view on treatments is 'balls to the wall'

Re: our postpartum discussion...I think it's pretty clear that our hormones are responsible for the cancer, but like SpecialK says, it's very complicated. As a good friend of mine said (who has not had cancer) said: "look at me. I have several risk factors. I'm turning 50, am overweight, I drink, I smoke, I've never had children, and have a bad diet right now with little exercise".

Bottom line is that it's so natural for us to run down the list and fixate on the past. I still get caught in that zone and it just stabs me in my heart. But I also realize there is no point to this. Most women have a few of the risk factors. And I know many women who started having kids in their late 30's to early 40's. It's so damn easy to walk this path. But 50 percent of people will get a cancer.

Elainethere, your message is vital, and I need to focus on that. None of us did anything wrong. We just need to do our best now.

And Cherry, a quick clarification re: postpartum bc...it's a more poor prognosis if the cancer has spread. The theory - I believe - is that in that pregnancy and postpartum period, hormones are so elevated and cancer cells can quickly disperse from the original tumour. Looks like you are extremely early stage

ok ok ok 😀