TRIPLE POSITIVE GROUP

HapB,

Its my understanding that survival is the same, but the odds of having a recurrence or new primary are less if you have removed the breast tissue.

But that's not what I am talking about. While you feel there is no need to remove body parts if it is not necessary, others may feel that there is no need to subject the body to radiation if avoiding rads is as simple a removing an unnecessary body part. Some are less attached to their breasts than others. Read some of the posts from women who have life long damage from radiation, its not always a walk in the park. My friend is having issues nine years later. She wishes her doctor would have explained at time of dx that she could have an mx and skip rads. She did not know that was an option.

All options should be presented to the patient to make the decision. I believe insurance will cover a bmx, or lx/rads. I'm sure radiation isn't cheap, I can't imagine there is much difference in cost, particularly if the patient does not reconstruct.

Thank you, HapB, I am reading a thread on this subject right now

soxfan75- I am on 4/6 TCHP chemo. I will have surgery, then radiation then every 3 week Hercepton/Perjeta infisions. That's what I have been told. My husband was confused too by having both but that's what they said. I'm having a terrible time with diarrhea so they are changing my chemo levels for the T and Perjeta because they both cause this. This may change the Perjeta part later then we'll have to see.

I had a question about the radiation too, in that my Breast dr has told me that even if tne tumor has shrunk after chemo I'll be looking at a mastectomy and radiation. She said that radiation is required to sterilize the remaining breast tissue, even after a mastectomy. I will have 30 sessions after my surgery

I had a 4 cm, no nodes, nothing anywhere else on my CT scan. It all just seems like overkill to me but I have to trust them

Regarding the question about local recurrence of lumpectomy vs. mastectomy, this from Johns Hopkins:

http://www.hopkinsmedicine.org/health/articles-and-answers/wellbeing/mastectomy-versus-lumpectomy-3-questions-to-ask-your-doctor

My MO believed that I had postpartum breast cancer (PPBC) which is an aggressive cancer in women under 45 years of age who develop breast cancer within 5 years of having a baby. My daughter was only 2 when I was diagnosed, and I had two consecutive miscarriages prior to delivering my daughter full term. I was basically pregnant off and on from October of 2010 to May of 2012. The doctors think that, followed by estrogen BC pills, fueled the fire.

There is a lot of research currently being done on PPBC.

My BS said the survival rate was the same for MX or LX/rads, but the risk for local recurrence or a new cancer is greater with lx because, obviously, there is breast tissue remaining.

I had an lx first, but had close margins and was going to need an lx redo, then rads.I believe about 25% ??? of lx's need to be redone, sometimes more than once, because of the margins, so even with lx multiple surgeries are sometimes required. During chemo, while reading this forum, I learned that since I knew I was node negative and the tumor was not near my chest wall, I would not need rads if I did an mx. I repeat - I read about that here on this forum - my BS did not discuss this option with me - that's what I have an issue with.

My MO (an Egyptian man),said he could understand getting a uni mx, but why did I want a double. He asked, "What does your husband think of this", lol. I responded that my husband thinks they are my breasts and I can do what I want with them.

My cardiologist was slightly concerned that the rads were going to be close to my heart, but didn't say I shouldn't do them. I felt Herceptin was going to be hard enough on my heart, so I was happy to skip rads.

But that's my personal decision, I'm not saying someone else shouldn't do rads. I'm saying doctors should explain the options better. My doctor - many doctors - never explain that with an mx there is a potential to skip rads.

Hap, I understand that lx with rads is the standard of care, so that's why doctors don't bother to explain there are other options, but why is it the standard of care? That is my point. Who has decided that saving a breast is that important? Someone like my MO who wanted to know about how my husband felt about my breast? Patients should decide what is important to them, doctors should just be giving all the facts.

My breasts were old and saggy, I didn't love them. They were not worth saving, especially if it meant I had to be radiated to keep them. Chemo was enough poison for me. I would have liked to have skipped that too.

I'm in the northeast and I do think the doctors lean toward lx with rads. Again, there's the problem, I don't think they should "lean", just present the options. Someone, somewhere may have a very good reason to want the alternative, and they should be able to make an informed decision.

When I read on BCO that for someone in my situation, no node involvement, an mx would mean I would not need rads, I went to my BS and said "Am I understanding this correctly, for me, doing an lx with rads is not to save my life, its to save my breast. I can have the same outcome by having an mx and I don't need to have any rads." She said yes, that was the case. I was sold. I told my husband, "I'm not doing rads just to save these saggy old boobs."

I think it was wrong for your doctors to tell you that an mx had no benefit for you. How do they know what benefits you? There is more to this decision than just ultimate survival statistics. Some women choose mx simply because they need to travel a long distance for rads and they don't have daily transportation. I suspect that's the reason for more mx's in the midwest. There could be many reasons one would prefer to skip rads, but if you aren't told that's an option, how can you make the best decision for you? Having breasts is not everyone's top priority.

My rant today on this subject started because of a co-worker who was not properly informed of options nine years ago when dx with dcis. She was told the treatment was lx with rads, neglecting to say she could do mx without rads. After nine years of mammo callbacks for questionable issues and biopsies, she asked to have a double mx, but the reconstruction is now compromised on the side which she had rads and may not take. She said that if she would have been told nine years ago that she could have have an mx with recon and no rads, that would have been the way she would have went. She should have been given all her options. I almost had an lx redo with rads because I wasn't given my options. I thought I needed rads with either the mx or lx. These can't be the only two examples of doctors not providing enough information for the patient to make an informed decision that benefits them, not someone else's ideal of what benefits them.

Again, not to discredit anyone who chooses to do rads to be able to save their natural breasts, its a fine choice if that's what you want to do. I'm only complaining about not being told that for some, there is an alternative approach.

Debiann, I have been following your discussion and I just wanted to say that bmx even If it removes the brest tissue it does not remove all mammary glands because they still may be there above the brest, sometimes as high up as clavicle and also under the arm. My tumor was on the same level as my armpit, they missed in on mammogram four months before I felt it myself and the tech had hard time to get it between the plates later, she needed a special plastic device that could hold it in place. I was not even sure it was bc, I started to search the web on bc tumor location and this is how I found this site. I started a thread and some people replied, all of them having bc outside the brest, or I mean what we usually consider the breasts. I mentioned it to the doctors that when you get the information on how you have to do your monthly exams it never says that you have to check up to theclavicle. I discovered my in the shower and it felt flat from the beginning and then swelled after the biopsy. How much tissue do they remove when they do bmx? I doubt they remove it all but of course the major part. I was told that my option was lumpectomy and rads, I live in Europe, everything is centralised where I live I cannot opt for mastectomy. Cherry

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....