mastectomy or partial mastectomy?

[Joanna J]

In Feb.09 I had a partial mastectomy,BUT.......most of these ladies indicate mastectomies;one of which I read that stated basically that it is protocol for Her2+ (mine being Her2+ stage IIa grade 3) which I understand,in my case being the most aggressive! Now I wonder If I did the right thing? I would appreciate ANY input on this please. Joanna J

[DiDi70]

I was diagnosed stage 3b, grade 3 (very aggressive) in Nov. 2009. Had 5 opinions on the mastectomy issue. My surgeon wanted me to have a lumpectomy. I asked the opinion of my Medical Oncologist, who recommended a mastectomy, due to his experience. My Onc. is about 60 yrs old and Chief of Onc. My Surgeon is about 45. I sought the opinion of others and the other 3 Doctors recommended mastectomy. I went ahead and decided to have a double mastectomy, though a double was never indicated. I have no regrets.

Hope this helps.

[Becky]

I too was Stage 2A and I had lumpectomy and radiation (all 3 of my opinions were the same - lumpectomy) so that's what I did. I am over 6 years out and I am doing well.

I figure that if anything ever happens again (a new DCIS or something), I would probably have a bilateral masectomy but all is well for me now.

[Debbie L.]

Joanna,

Sorry you're having these niggles of doubt. I think it's part of the process as we move thru this, those niggles. Our niggles may be about different things but I think we all have them. I remember so clearly how I studied others' histories with breast cancer in SUCH detail, as if I could find important answers there about what would happen to me. But over time, you begin to realize that no one knows what will happen. No one can tell us what will happen. We just have to find our way to live with that uncertainty, and keep moving forward. I will say that because of those niggles, I ALWAYS encourage newly-diagnosed people, and those at treatment crossroads, to get expert second opinions at an NCI-designated Comprehensive Cancer Center.

But on to your question. There have been many studies that have shown that unless the tumor is very large, survival statistics for mastectomy vs. lumpectomy are equal. These studies have not, to my knowledge, broken it down by pathology details (like ERPR, HER2, etc), but they were large studies and if there were a difference for some categories, that should show up as a small difference in the whole group (prompting them to look more closely at subgroups).

There IS a (very) slightly higher risk of a local recurrence (in the area of the removed tumor) with lumpectomy but as Becky noted, that can be dealt with and does not change (worsen) the risk of dying from the cancer. It could be argued that it's certainly not a pleasant thing to go through, but the studies do not show that changes the threat to life.

In the last year or so, there was a study that did show that for very young women (under 40), the risk of local recurrence after lumpectomy was higher than that shown in the other studies. But it didn't have survival statistics. In addition, it showed that chemo reduces local recurrence so that's good news also.

As for more mastectomies in women on this site - I don't know if that's true or not. You could ask us to tell you why that was our choice and I bet most would report that it was not recommended or chosen specifically because of HER2 status. There are many reasons for choosing mastectomy and not all of them are medically-indicated reasons, for example.

I had mastectomy because the tumor in my breast was "occult" -- it could not be found with mammography nor ultrasound.

Debbie Laxague

[Becky]

Joanna

I also want to add that one reason I got three opinions on surgery is that I COULD NOT believe that no one told me to get a masectomy. And no one did. I didn't have anyone to ask or lean on so - with 3 opinions all saying lumpectomy, that's what I did. Like you (being about one year out), I fretted over the lumpectomy decision and really regretted not having a bilateral masectomy but I don't anymore. As I said earlier, although I don't want a local recurrence or a new breast cancer, if anything should happen in the future - off with the "girls". So, I am diligent about my monthly breast exams (I have a "name" for the lumpectomy hole in my breast - the "shoot" - ie: down the shoot and up the other side)

I get my mammos on time etc (and they are a little nerve wracking but oh well). I truly understand your concern and question though - totally. I have felt the same as you and many times wished I had had bilateral masectomy but I went in with informed opinions and now, I just go with the flow.

[Gerri]

I was Stage 2A Grade 3 as well. My surgeon at a major NCI designated Cancer Care Center would not tell me what to choose, but instead told me he was very comfortable with me having a lumpectomy if I chose to do so. He stated exactly what Debbie L (thanks Debbie!) said, that survival statistics for lumpectomy vs mastectomy are almost identical. I chose a lumpectomy with radiation and am now 5 years out from diagnosis and doing well. Just as Becky stated, if I ever recur in my breast I will most likely go with a bilateral masectomy. For now I am very comfortable and happy with my choice. This is a very personal decision to make and we all have our reasons for choosing as we do, BUT our choices should be based on scientific fact instead of driven by our fears. Seeking more than one opinion (from a breast cancer specialist) is always a good idea.

As helpful as everyone on this site is, we all have to keep in mind that for the most part we are not medical professionals and sometimes statements are made that may be causing others to make important decisions or question their choices based on opinion only. Don't get me wrong, many of the members here are excellent sources for information and their opinions are always backed by science. These are individuals whose advice/opinions I take very seriously because I know that they do their research. On the other hand, every so often an opinion is presented in a post as a fact, but it may not be scientifically sound. I worry that the Newbies take this information and run with it.

Try not to worry needlessly, you have enough going on without second guessing the choice you made based on what others have done. Before you know it, you too will be 5 years out and counting.

Take good care,

[BonnieR]

Well said, Gerri. We need to be mindful of vulnerable newcomers and careful not to influence their decisons too much. Just share our experience, strength and hope.
As Debbie says, we will always have those "niggles"probably.
Keep the faith.

[Joanna J]

Thank you Ladies for responding,I teared up,when I saw how many of you answered,so appreciative that people care.I guess we will always hope and wonder if we chose the best way for ourselves (probably natural) I have been questioning a lot of things lately;my 23 yr old niece;Tabatha had a double mastectomy last week,she also has cerebral palsy,the surgeon told her mother (my sis) that the biopsy showed it to be the very aggressive cancer,we will know more,when the full path comes back,puts me in mind of Her2...This is what most people refer to as The Aggressive B C ;but we just don't know yet,But I am haunted by cancer once again;(my older sister was dx'd in 09' as well; w/a non-aggressive kind in stage I...she only had radiation THANK GOD) I hate cancer & it can be so haunting,I was ok until this happened to my niece,Now I am thinking all these thoughts and bouncing off of the walls...keep me in your prayers,Joanna J

[Gerri]

Joanna,

I am so sorry to hear about your 23 yr old niece being dx'd as well. I hope the doctors have recommended testing for BRCA1 & BRCA2 since there is such a strong family history. If they haven't, be sure and push for it. You may not test positive, but you (and your niece) certainly should have that information in order to move forward.

[BonnieR]

Joanna, I have always tended to be a "woulda, coulda, shoulda" kind of person so all the cancer decisions put me over the edge!! But I have learned to accept the decisions I made as being right for me at the time.
You are now in a postition to offer support to your neice as she travels down this path that we have all been on.
Keep the faith.

[tricia keegan]

Joanna, I was 2b highly triple pos with positive nodes and chose a lumpectomy, my surgeon did'nt want to recommend one over the other and said it was my choice! Five years on I'd like to think this was right for ME, but like Becky, my decision may be different if I had a local recurrance.

My niece was diagnosed last year too at age thirty one, she did a lumpectomy, chemo etc but they missed an area when first dx so she ended up having a mast along with more chemo!
Thankfully she just got the all clear and is doing well now, good luck to your niece in making her decision.