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Triple negative breast cancer lumpectomy or masectomy?

midnight10
Posts: 74
Joined: Sep 2010

I was diagnosed as triple negative early in August. I'm a 58 yr old Caucasian. Originally the plan was chemo, lumpectomy then radiation. Now my oncologist says the surgeon says a double masectomy would be a better choice. The stage is 2B with lymph node involvement. I don't know how many lymp nodes are involved for sure but they say they will take out at least 2 levels of lymph nodes in my armpit. Chemo I am getting is AC (doxorubicin and cyclophosphamide) followed by paclitaxel. I've got one of the four AC treatments left then switch to paclitaxel for 4 every other week treatments.
I have an appointment with surgeon on Wednesday and am looking for the right questions to ask him to help me clarify why the change from lumpectomy to double masectomy. My mom and a sister will be going with me to the appointment. When I asked the oncologist why the change I didn't really get much of an answer.
Any insight or suggested questions appreciated! Thanks.

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I am not triple negative so dont have the answer. I know it is considered more agressive. soon others will answer.

Aortus's picture
Aortus
Posts: 967
Joined: Jan 2009

My beloved wife Moopy was diagnosed 11/2008 with Stage IIIa TNBC. 6/15 nodes were positive after her modified radical left mastectomy. She got 6 rounds of TAC, followed by about 35 rounds of hyperthermic radiation, and is coming up on the 22 month out mark, kicking it in grand style.

If a double mastectomy is the surgeon's idea, it's not surprising that the oncologist didn't have anything to say about it. I am a little surprised that the oncologist him/herself didn't have any definite ideas. When Moopy and I had our first meeting with the surgeon, Moopy stated flat out her preference for a mastectomy... even before the surgeon was able to say he didn't consider lumpectomy an option. As the Moopster saw it, that damned boob was trying to kill her. Neither of us has ever regretted the decision, either. My list of "wife criteria" calls for 0-2 boobs, and Moopy is still in that range, so I'm just thrilled I get to keep my wife.

Seriously, it is a complicated judgment call. You're well within your rights to ask the surgeon what led him to change his mind. Which scans or blood tests have been performed to lead him in that direction? Why would a double mastectomy afford a better prognosis in your case? However, I would suggest that you NOT ask for statistics. The statistics exist, and for TNBC tumors they are not very jolly (they are also waaaaay outdated in my obsessed-layman's view). Whatever goes on, know that you are a woman, not a statistic and not a collection of body parts. The great majority of TNBC patients win the battle and go on with their lives. There's no reason why you can't be one of them.

Please keep in touch, okay? And if you have more questions, let 'em rip.

Best,
Joe (Aortus)

midnight10
Posts: 74
Joined: Sep 2010

Thanks Joe,
It is a complicated judgement call. My sister came from halfway across the country to go go with my mom and I tomorrow. I am pretty sure I'll go with the double, but it is scary and confusing.
Your wife is very lucky to have a supportive spouse!
Cindy (Midnight10)

marines911's picture
marines911
Posts: 68
Joined: Aug 2010

My wife and I discussed it and with the advice from a friend who lost his wife to breast cancer many years ago stated that the surgery and recovery was going to be difficult enough and that to have to go through it a second time would be worse. The advice from the doctor at that time that my wife's TNBC was more likely to return in the other breast so my wife decided to have the bilateral masectomy. The nodules they removed (20 or so) were all negative, the original tumor sharnk from 9cm to about 1cm after the TAC, but unfortunately the cancer returned and in the spine which put her at stage 4 and now she is still fighting and not giving up.

Good Luck,

Thomas

midnight10
Posts: 74
Joined: Sep 2010

Thanks. Keep Helping your wife in her fight.
Cindy

heidijez's picture
heidijez
Posts: 441
Joined: Mar 2010

just got home from my mastectomy on friday and am doing quite well surprisingly! with inflammatory cancer (one of the rare, but very aggressive cancers) they do chemo first - i was a chemo failure and went through a second course of chemo - so have spent almost eight of the past nine and a half months in chemo, had mastectomy of left breast and lymph nodes last wednesday, no pathology report yet - possibly tomorrow or tuesday. will go through radiation when i heal up enough and will eventually have reconstruction (about 9 months down the road according to my plastic surgeon)

just remember that we are all unique and even if we had the exact same diagnosis, we wouldn't necessarily have the same treatments or reactions. put your trust in your doctors and know that you can get through this.

this is a wonderful place to get information, to vent, to share your fears and concerns. we are all here for you!

hugs to you from heidi

midnight10
Posts: 74
Joined: Sep 2010

I will probably not do reconstruction, have heard very little positive about them and have talked to several women who chose not to reconstruct and they are very happy with decision.
How long were you in the hospital after mastectomy? I'll be about an hour and a half from home, because I'm getting treatments, etc in a larger city. How long is typical recovery time. I do a lot of driving for work...
I'm going to have so many questions for the surgeon and oncologist tomorrow and I think that's a good thing!
Thanks,
Cindy (Midnight10)

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

TNBC Stage IIIC here. I chose the bilateral mastectomy because it was advanced pretty far. It was my decision and the doc said I made a good one. I went through 4 rounds of A/C then 11 rounds of Taxol. I was supposed to have 12 Taxol but the neuropathy was so bad they stopped it. Feb. of this year I had the bilateral mastectomy, both ovaries, and immediate reconstruction using the lattisimus flap. After I healed from surgery I underwent 25 rounds of radiation. So far so good. I keep the faith and I do what my doctors tell me to do. You too will get through this. I figured two boobs was a small price to pay for life. I'm not happy with my reconstruction but that's ok too, I'm alive. My thoughts and prayers go your way for great doctors and good decisions. I hope this helps.
Hugs,
Kari

midnight10
Posts: 74
Joined: Sep 2010

Yes it helps tremendously! Mine wasn't quite as advanced as yours. Why the ovaries also? My blood counts have been ok so far, oncologist says that without Nuelasta shots I'd be in trouble though. I truly appreciate all prayers and thoughts.
Thanks,
Cindy

reeseslover1234
Posts: 87
Joined: Apr 2010

Hi midnight, I was diagnosed in Aug. 2009. Stage 2A, grade 3. I opted for the mastectomy of my left breast. Had I known at the time that it was TN, I would have asked for a bi-lateral mastectomy. I had 6 rounds of TC chemo afterwards and as of July 12 (PET Scan), I am cancer free.

Take care and I hope everything goes well for you,

Reese

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

As far as I am concerned statistics should be used to determine treatment needed thats all. Joe thanks for saying that about boobs. I have been feeling rather sad about my boobless state and havent really chatted with my husband about it. I think he would take your position, but its nice to hear it from another guy. Moopy is very lucky and I know you feel the same about her. I just like the way you phrased it. I have to look up this tnbc as it confuses me if your her2neg wouldnt that be good? My first breast cancer was estrogen neg but thats all they tested for in 1994, so i could have been triple neg and just not known it. now this new primary is estrogen pos. prog pos and her2 neg.
Not to change the subject, glad you got some answers. glad you found us, this is a supportive caring group and someone usually has an answer.

midnight10
Posts: 74
Joined: Sep 2010

I can't believe how much this has helped. And am thankful I did find the information about this website as I was sorting through the stacks of information I'd gotten. Thanks!
Cindy

MAJW
Posts: 2515
Joined: May 2009

I am triple negative, had a lumpectomy in May, 2009 followed by 12 weeks of chemo and 33 radiation treatments...STAGE II, 2.2 cm tumor...I did NOT have lymph node involvement.....have they already biopsied your lymph nodes? Mine were not done until I underwent the lumpectomy. So I am confused as to how they know the bc has spread to your lymph nodes. Since you are having chemo before surgery, I am assuming your tumor was rather large......are both breasts involved? Has the chemo shrunk your tumors? My surgeon and oncologist both told me that the survival rate is no better with a mastectomy than a lumpectomy due to the fact that it is impossible to remove ALL breast tissue...So neither ever mentioned mastectomy to me.

It's all so much to take in, decisions, decisions, decisions! And they are ALL up to you and the recommendations of your physicians......I wish you the best

Peace be with you

midnight10
Posts: 74
Joined: Sep 2010

They biopsied 2 lymph nodes at the same time they biopsied the breast. Yes, they lymph nodes were rather large. One was about 2 1/2 inches long-I can't remember how many cm's they said and was growing very fast--dr's original words were that's good because cancer usually doesn't grow that fast. That's how they found the cancer. They are responding well to chemo, but the shrinkage has slowed down considerably in the last couple of weeks. Just one breast. My oncologist is talking about putting me in a clinical study for lymph node involvement when they do the surgery, says that it would not help me because they already know the lymph nodes are involved, but would help others. Just as a side note-I wasn't happy with the fact that the fist surgeon I went to for a surgical consult put off the lymph node biopsy for a little more than two weeks and argued with my primary care physician for a full day to get her to set up a 2nd surgical consult for my in a larger town. She said it would take 3 weeks to get me in. I finally told her no that wasn't acceptable and I wanted her to make the phone call. She did, at about 3 on a Friday afternoon. My appointment was at 9:45 the next Monday morning and the surgeon immediately sent my to their breast health facility and the biopsies were done at noon that same day. So if you don't think something is right- don't give up.
Thanks,
Cindy (Midnight10)

e_hope's picture
e_hope
Posts: 371
Joined: Sep 2009

I too am TNBC.. stage 2b (3.5 cm tumor and 2 positive nodes) grade 3 cells. I had a double mastectomy by choice, but had the option to try chemo to shrink my tumor. ((If the chemo did not successfully shrink the tumor size a mastectomy would have been recommended any ways.)) I would question your surgeon as to why. If your wish is to have a lumpectomy they should be giving you a concrete reason as to why the change of plans and recommendation.

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