Would a Double Mast Ever Eliminate Need for Chemo/Rads?

Raili

Would a Double Mast Ever Eliminate Need for Chemo/Rads?

Raili

Hi everyone,

First, a disclaimer: I KNOW this is something I need to discus with my own doctors, and I WILL!   I am not looking for medical advice about my specific case.

I had a lumpectomy to remove a 1cm mucinous tumor (low grade) and a small area of DCIS microcalcifications.  After my upcoming re-excision to clear the margins, I will be meeting with a Rad Onc and Med Onc to discuss the next treatment steps.  I am fairly certain 6 weeks of radiation is the recommendation, but chemo is unknown at this point (I haven't yet been Oncotyped.)

I'm wondering - could it be possible that if I chose to have a double mastectomy, it would reduce my risk of recurrence enough that I wouldn't need radiation or chemo or hormone therapy?  Does it EVER work like that?  It seems to me that a double mastectomy would be a less dangerous option than chemo/rads.  i.e. Chemo poisons your blood stream, kills good cells along with the bad, messes up your digestive system and immune system, etc.  Radiation risks are heart damage (it's my left breast!), lung damage, cracked/broken ribs, breast pain, etc.  I already have asthma and digestive problems, which chemo/rads would be likely to make worse.  Do YOU think a double mastectomy would be less dangerous than chemo/rads/hormone therapy?

keno41

I think it depends on alot of things, including your stage. Many people that have bilateral mastectomies still need to have chemo and radiation. It's not a given that you won't have to go through that just because you had a bilateral. Your oncotypeDX will be very helpful with that too. IMine was 15, so I opted out after my bilateral, but would have had to had my score been higher.

lookingforward4more

Hi, first I am truly sorry that you are having to make these decisions...but you will get through it! I do believe that if you had a mastectomy you might be able to skip radiation unless you had positive lymph nodes or a big tumor (which you don't). That said...chemo is given to try and stop any cancer cells that have gotten "loose" so to speak. That depends on the pathology of your tumor..how aggressive, how fast it was dividing, etc.  Your doctor will advise whether you need chemo but a mastectomy won't do what chemo does (kill cancer cells in other parts of your body).

 I had a double mastectomy and believe me, if I could have gotten by with a lumpectomy I would have been thrilled. We all have our burdens but think long and hard about doing a double mastectomy because I also went through radiation and six weeks of radiation was a lot easier than losing my breasts and enduring reconstruction.

 Whatever you decide good luck and let us know how you are doing.

Beesie

Radiation - possibly.

Hormone therapy - possibly.

Chemo - no.

Radiation is given to address any cancer cells that remain in the breast.  With a mastectomy, if good margins are achieved and if there is no nodal involvement, usually radiation won't be required.  But this is not guaranteed and often can't be known until after the surgery is complete.  If it turns out there are cancer cells too close to the margin (which in the case of a mastectomy usually means cancer cells right at the chest wall), then radiation will often be recommended.

Hormone therapy is given to address 3 different risks: 1) local recurrence risk (i.e. in the breast); 2) distant recurrence risk (i.e. outside of the breast - this is mets and this is the biggest concern); and 3) the risk of a new cancer in either breast.  With a bilateral mastectomy, the 1st of these risks and the 3rd of these risks is reduced significantly but the 2nd risk - the most serious concern - isn't affected at all.  So if there is a reason to believe that there is a high risk of distant recurrence, then hormone therapy will be recommended even for those who have a bilateral.

Chemo is given specifically to address the risk that some cancer cells escaped the breast and moved into the body, either through the lymph nodes or through the vascular system. The role of chemo is to track down and kill off any of those stray cancer cells. For those with any amount of invasive cancer, even if the nodes test negative, this risk exists.  The larger the size of the tumor, the greater the risk - this is why chemo is almost always recommended for those who have tumors that are 2cm or greater in size, regardless of the nodal status.  The "line in the sand" for chemo is generally considered to be a 1cm tumor but there is some variability on this, based on the aggressiveness of the cancer.  In other words, someone with a very aggressive cancer that is 0.5cm in size may get chemo while someone with a less aggressive cancer that is 1.5cm might not get chemo. But if it is judged that chemo is necessary, then chemo will be required regardless of the type of surgery - lumpectomy, mastectomy, or bilateral mastectomy.

As for whether a bilateral will be less dangerous that rads, hormone therapy and chemo, well that depends on your perspective.  While a small percent of women may have permanent effects from any of those three treatments, for the vast majority of women, the side effects are temporary.  But a bilateral mastectomy is permanent - you forever lose all the feeling in your breasts and for a short or long time you may suffer side effects such as phantom itching, phantom pains and muscle pains.  The long term side effects of mastectomies aren't discussed often on this board, but the fact is that a major change like this to your body is not something that is without implications.

lvtwoqlt

raili, I have a family history of breast and ovarian cancer. My aunt was diagnosed with ovarian cancer in 1978 and passed away from complications 8 months after dx. My mom was diagnosed with invasive breast cancer in 2001 and had 7 of 15 nodes positive. She opted for a single mast, she had to have both chemo and rads, both because of the positive nodes. I was diagnosed in 2005 and 2006 with pre-cancer Atypical Ductal Hyperplaysia once in each breast. At the 2nd diagnosis, my surgeon suggested that I consider preventative bilat mast because he said 'it wasn't a matter of if but when I developed bc'. Six months after that discussion, my mammo once again showed micro-calcifications. this time the biopsy showed DCIS. I opted for the bilat surgery, I felt I had been fighting this disease since 2005 and I didn't want to risk it coming back more aggressive. Because my diagnosis was in-situ and my nodes were all negative, I was able to avoid chemo and rads. It was a hard decision and I was glad that I had the previous 6 months before the cancer was discovered to think about the ramifications of doing a bilat mast. I didn't make the decision based only on avoiding chemo or rads but based on my history. The bilat is a big decision, there is loss of sensation in the breast area, the reconstruction will not look as good as the original (It isn't like getting a boob job augmentation). I personally am happy I made that decision, the final path report showed more DCIS and ADH in both breasts that didn't show up on the mammogram.

Lolita

I had a bilateral mastectomy.  I did it, in part, to avoid radiation.  However, I took my chances since had my lymph nodes been positive, I would have had to have radiation.  I didn't find out until after the bilat.  I'm still taking tamoxifen to avoid distance recurrence.  I was concerned about radiation because I used to smoke.

weety

I'm just adding in my own experience with mastectomy.  I knew the chemo was a must (because of HER2+) but never thought I would have to do rads with a mastectomy.  Every doctor I saw said, no, my margins were clear and the tumor was small, and no lymph node involvement, so no rads.  However, I met with the rad onc last week and surprise, she wants to do rads because although the margins from the mastectomy were clear, they were small (1mm and 3mm) enough to cause concern and my DCIS did not clear the margins even with the mastectomy.  So. . . to answer your question. . .even with a mastectomy, radiation is still possible depending on the margins. 

joansf

so, I'm not a doctor...but given your nodes are negative and that you're HER2 negative, you won't need chemo, just hormone therapy.  If you had a mastectomy, you would not need to do radiation .  My advice:  your prognosis is great.  Do the radiation and keep your breasts!

Raili

Thanks so much for all of your helpful stories and info, everyone!!

It just gets more complicated all the time... sigh.  I had the re-excision but my margins still aren't good, because pathology showed that the "3mm" area of DCIS (as seen on MRI/mammo) was actually close to 3 centimeters.  SURPRISE!!  Stupid sneaky DCIS that was undetectable by imaging!!  So my margins are technically negative but barely, and my surgeon is recommending either a 2nd re-excision (she'll do up to 4 re-excisions before it's an automatic mastectomy) followed by radiation and possibly tamox, OR a mastectomy, in which case I probably would not need radiation. (The tumor & DCIS were both in the same breast quadrant, and closer to my nipple than chest wall).

As for chemo, my surgeon suspects I would not need it, but of course she tells me (and I know) that I need to talk with the medical oncologist about that, and I have yet to meet with her.  But I have pretty much decided that I would refuse chemo no matter what the Oncotype test might say, thus, it's not worth paying the $3600 for the test.  I know many people think it's a poor choice to not even consider chemo.  And I now understand that getting a bi-lateral mastectomy does not effect whether an oncologist will recommend chemo or not, but nonetheless, I will be saying no.  (I'm hoping/assuming it wouldn't even BE a recommendation, considering my tumor was 1cm and mucinous - which is "low grade by definition," as my surgeon put it, and my lymph nodes were clear.)

I just can't decide/figure out which would be best for me, a bi-lateral mastectomy or the radiation.  I would definitely not go for reconstruction, because to me it's not worth putting myself through potentially dangerous, expensive, and painful reconstruction surgeries basically for aesthetics only (sense there's no sensation).  I'd still love my breast-less body... I just want to do whatever option (radiation or mastectomy) is best for my PHYSICAL health, and that's hard to figure out.  I'm meeting with my surgeon tomorrow to talk about it all.  My mom and I have a list of approximately 18-20 questions to ask her and will be audio-taping the visit so we remember it all, and then will repeat the process with the medical oncologist and radiation oncologist next week, and compare and contrast it all!  Oh it's exhausting!  I never ever dreamed I'd be spending my 31st birthday trying to decide whether to keep my breasts or not!