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Surgeon says to have second lumpectomy (re-excision) but I'm learning toward bilateral mastectomy -- any thoughts?

SherryAF
Posts: 31
Joined: Nov 2009

I had a lumpectomy on November. Lymph nodes are negative (and I'm very thankful about that), but they didn't didn't get clean margins. So now surgeon is planning ot go back in again.

I will be visiting with oncologist for the first time tomorrow, and one thing I want to talk to her about is having bilateral mastectomies and reconstruction at the same time.

I am 48 years old, my mom has had breast cancer, my grandmother has had it twice, and I'm just thinking if I can get rid of it now before it recurs and moves to my lymph nodes that I would be better off. I wouldn't have to have radiation or chemo, and I'd never have to worry about recurrence.

Am I crazy for thinking this?

brenda247's picture
brenda247
Posts: 124
Joined: Apr 2009

no you are not crazy.. i had to make a decision between them both. it was hard but i am in the same boat as you my mom had it a year and half before me and aunt year before that. it was a very hard decision indeed but i think i took the best step. i had mastectomy on my left breast and no trace in limpnodes (yes thank god for that)!!!! but getting it all so it want come back is better than knowing theres still tissue there and it could reaccure. i couldnt handle that. it was hard enough dealing with loosing my breast it takes a toll when thats what makes you a woman. but i thank god that i have been through 6 rounds of chemo and i finished oct 1 2009.. i had some ups and downs but im glad i done what i did!!! so what ever decision you make do it for you not anyone else and ask your dr the best route for you..
GOOD LUCK TO YOU AND MY PRAYERS ARE WITH YOU!!!

YOU WILL MAKE THE RIGHT DECISION.....
HUGGGS
BRENDA

brenda247's picture
brenda247
Posts: 124
Joined: Apr 2009

no you are not crazy.. i had to make a decision between them both. it was hard but i am in the same boat as you my mom had it a year and half before me and aunt year before that. it was a very hard decision indeed but i think i took the best step. i had mastectomy on my left breast and no trace in limpnodes (yes thank god for that)!!!! but getting it all so it want come back is better than knowing theres still tissue there and it could reaccure. i couldnt handle that. it was hard enough dealing with loosing my breast it takes a toll when thats what makes you a woman. but i thank god that i have been through 6 rounds of chemo and i finished oct 1 2009.. i had some ups and downs but im glad i done what i did!!! so what ever decision you make do it for you not anyone else and ask your dr the best route for you..
GOOD LUCK TO YOU AND MY PRAYERS ARE WITH YOU!!!

YOU WILL MAKE THE RIGHT DECISION.....
HUGGGS
BRENDA

brenda247's picture
brenda247
Posts: 124
Joined: Apr 2009

no you are not crazy.. i had to make a decision between them both. it was hard but i am in the same boat as you my mom had it a year and half before me and aunt year before that. it was a very hard decision indeed but i think i took the best step. i had mastectomy on my left breast and no trace in limpnodes (yes thank god for that)!!!! but getting it all so it want come back is better than knowing theres still tissue there and it could reaccure. i couldnt handle that. it was hard enough dealing with loosing my breast it takes a toll when thats what makes you a woman. but i thank god that i have been through 6 rounds of chemo and i finished oct 1 2009.. i had some ups and downs but im glad i done what i did!!! so what ever decision you make do it for you not anyone else and ask your dr the best route for you..
GOOD LUCK TO YOU AND MY PRAYERS ARE WITH YOU!!!

YOU WILL MAKE THE RIGHT DECISION.....
HUGGGS
BRENDA

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

no you are not crazy, its an individual choice, I had a couple of reexisions the first time and then a mastectomy I was 34, it was hard but not earth shattering. I wish I had my other breast removed too and was looking for that before this new primary. I dont speak for everyone, but my breasts were just not worth what i am dealing with and will have to deal with. But you have to examine how you personally feel about your body image , how you deal with things and what you want to deal with afterward. I think I felt differently when I was 34 then I do now at 49. my relationship is different with my husband (more mature) now so we make different decisions at different times in our lives.

marilyndbk's picture
marilyndbk
Posts: 238
Joined: Sep 2009

What you are feeling I think is so normal. We all have so many decisions to make about what is best for us. My DCIS returned this year. The surgeon told me I had to have bilateral mastectomy. I had previously had lumpectomy with rads 8 yrs ago. Has any dr suggested you have the BRAC1 and 2 gene test done? My mother also died from bc many yrs ago. she was 46. After too many biopsies I had the testing done a few years ago. It came back negative for Bracs. i could have had preventative mast at that time but could not deal with loss. You are doing the right thing in trying to find out all you can about your options. I am having some reconstruction trouble with my left breast that was radiated. You might want to question the surgeon about future reconstruction problems if you need it in the future. Take good care of yourself. Marilyn

cvolk821's picture
cvolk821
Posts: 36
Joined: Nov 2009

Sherry - did you have Genetic Counseling? They check for genetic mutations which run in families, but even if/when you don't fit the two dna strains this testing seeks, you can get some good information from this session. No Maam! You are absolutely not crazy for considering a bi-lateral mastectomy - I just had the same thing done and for precisely the same reasons! After seeing the Genetic Counselor where I was frightened out of my wits by the probabilities of heredity (are we from the same family?), and on to the Oncologist who promised me that ILC has the propensitity to recur as a primary cancer in the future - my decision became a no-brainer. The no radiation is an added bonus, and I'm still awaiting my onco-type report to determine the benefits of chemo. Think long, hard, and seriously about it, but do not hesitate because it sounds crazy! With your family history, insurance will cover a bi-lateral and reconstruction (even if one side is profolactic).

You are still very young, Sherry. Do whatever you need to ensure your health and peace of mind.

Connie

limegreen's picture
limegreen
Posts: 6
Joined: Dec 2009

Hi SherryAF, I am 47 years old and in a similar situation. After a surgical biopsy in October showed I have breast cancer, I have been having further testing. An MRI showed a possible 2nd cancer in the same breast. Am having a needle bipsy this week. At the very least the surgeon has to go back in and remove more tissue for good margins from the October bipsy. If this second spot tests positive for cancer can either have that removed with good margins too or have mastectomy.

I went last week for BRCA testing and will have the results in the next 10 days. If I am BRCA positive, and that second spot is cancer, I am thinking a double mastectomy would be the appropriate decision for me. I won't know if it is in my lymph nodes until my next surgery. I am afraid of recurrence also. My mom died of re-curring and metascized breast cancer.

Already spoke with surgeon and plastic surgeon about possible mastectomy and re-construction. I learned that if one plans to have a mastectomy, it can be done all in one surgery. Both surgeons are together in the O.R. After the surgeon removes the breast tissue, the plastic surgeon gets the area ready for implants, etc.

KBushart
Posts: 7
Joined: Nov 2009

I was shocked when my dr. recommended a double mastectomy for me, but also relieved. I am 49 and have had 5 biopsys over the last 5 years. Three of them were this year and of course the last one was cancer. He said, you are young. Let's get this over with and behind you so that you can get on with your life and not continue worrying about every lump. I also have avoided chemo and radiation. Almost feels like I didn't really have cancer. One thing he did say was that whatever decision I made, it was the RIGHT decision. So no matter what you decide, know that it is the right decision for you. The very best to you, Sherry!
Kim

ms_independent's picture
ms_independent
Posts: 216
Joined: Nov 2009

I don't think you are crazy. I am having a double mastectomy in 2 weeks for much the same reason (family history and fear). The month+ leading up to the cancer diagnosis was torture. I had/have a really hard time with the unknown. Yes we are doing the genetic testing. In the last 2 years a new test has come out (the BRAC I think), my surgeon has had 3 people test positive on that test and negative on the BRCA1 and BRCA2. Anyway, my point is, they may not have found all the gene variants that predispose to breast cancer. I need to know I have done everything I can to prevent another bc. It was an "easy" decision for me in that it is the best option I have. Now, I am 52 and have a husband who wants me alive and healthy and if removing my breasts makes that happen---he's all for it. I have known for 22 years that I would most likely be faced with this decision---so I've had lots of time to think about it. It's so individual what makes the best choice for you. You don't have to decide immediately. Keep doing what you're doing, you'll find the right solution for you. I'll be keeping you in thought and prayer.
El

New Flower
Posts: 3982
Joined: Aug 2009

year ago.My first lumpectomy did not give clear margins and I went for mastectomy.
I have no regrets, but unfortunately for me I had Chemo and radiation/ My cancer was very aggressive and tumor bigger than originally thought. I was 46.
I am surprised that having your family history and first lumpectomy your surgeon recommends another lumpectomy. Probably second opinion would be helpful.
Good luck

natly15's picture
natly15
Posts: 1930
Joined: Sep 2009

It's an individual decision.

I had a lumpectomy and removal of sentinel lymph node. A week after surgery I was advised that my small, but very aggressive tumor had invaded the sentinel lymph node, thus additional surgery was recommended to remove the rest of the lymph nodes.

I was leaning towards mastectomy but changed my mind after getting 2 different opinions. The surgical oncologist laid it all out, and seemed to be happy with my decision. I opted only to have the rest of the lymph nodes removed due to my age 66, and based on the surgeons comments. When she said cancer could reoccur in the chest cavity even after having a mastectomy, I immediatety decided not to have the mastectomy.

I'm ER+ but numbers were too low to fight cancer cells without chemo. I have no history of breast cancer on my mother's side of the family, however my mother passed at the age of 40 from heart disease, so who knows if she may have been susceptible. I'm happy with my decision. My oncologist said that if I took the chemo, I would get at least 5 to 10 more years hopefully cancer free. If I get 10 years that would take me to age 77, since I'll be 67 next month.

If you pray, I suggest you pray about it and get as much info as you can. God bless you with your decision. Please let us know what you decide. Hugs

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

I also tested neg on the gene and my first cancer was ductal. after having several biopsies I was tired and was seeing docs to have a propholactic mastectomy, mammogram, neg, saw 4 docs, onc, 2 surgeons, gyn, and no one felt a lump i discovered it myself. lobular. I was too late. I often chide myself for not doing it sooner, who knows. I was busy with college applications and was going to do it this fall. also for people to know is lobulars are not always detected on mammo, even my MRI was not that specific. I did not know this. Ihad a biopsy in the same are 1.5 years before, they were hoping the lump was scar tissue NOPE. I feel in my heart that having a BC so young and now this I must have some gene that they havent discovered. I worry about my kids. Like I said, there was no established reason for me to want the mastectomy, and really the surgeon was not too on board, but when i got diagnosed everyone knew iwas having the mastectomy no lumpectomy, I was done.

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

BTW no one has a crystal ball, I told my story so you can see how you feel about it. not for advice, praying you make the right decision for you and you have peace!

New Flower
Posts: 3982
Joined: Aug 2009

yes lobulars are not always detected by Mammograms,
I had both ductal and lobular. It became known after radical mastectomy and my diagnosis was revised from stage I(Mammogram) to Stage II (after lumpectomy) to Stage IIIC after mastectomy.
My case relatively rare I wish nobody would never have similar problems.
The most important is that you need to be decisive and move fast.
It is a very personal decision.

VickiSam's picture
VickiSam
Posts: 8253
Joined: Aug 2009

us. The statics are not very solid for my case. No family history, unable to get brca 1 or 2 test, or oncotype testing. However, I have had both thyroid and cervical cancer in the past 20 years, and my decision is bi lateral mastectomy .. I am at stage 1, DCIS breast cancer and Her2 - my tumor was removed on 8/10 .. chemo of 18 weeks, precautionary .. My stage of cancer can always change after my mastectomy.

Best of luck with your personal decision.

Vicki Sam

dcisoregonsurvivor
Posts: 4
Joined: Dec 2009

Five years ago after a DCIS early cancer diagnosis, I opted for a lumpectomy and second lumpectomy because of unclear margins. When told a SECOND lumpectomy was needed, I wanted to get a mastectomy: primarily to avoid radiation....chemo was not needed. The surgeon a mastectomy was drastic treatment and a second lumpectomy would "spare" the breast. I was not in a good mindset to undertake reconstruction decisions then while worrying about survival. I agreed on the second lumpectomy. Starting as a small "B" and ended up as an "A" which was deformed further by radiation....the "spared" breast has been a drain on my self confidence for five years. Thankfully for legislation I was eligible for reconstruction and a lift on the unaffect breast to achieve symmetry. In Oct. of this year I had a simple mastectomy to give a clean slate for a Latissimus Flap transfer and expander.
This was the only delayed reconstruction option for me due to damaged tissue from radiation (which I really didn't want). Radiation does complicate delayed reconstruction; while a mastectomy instead (in my case) might opt a patient out of radiation and give a better slate for reconstruction immediately or at a later time. The other huge benefit....mastectomy almost lowers to 0 the reoccurence rate. My lumpectomy/radiated breast did not have those odds. I am the only family member with any breast cancer; so a bilateral mastectomy was a bit more than I wanted to face....but just one bad mammogram on the other side and I will not hesitate to get a mastectomy. Hope this helps!

lovelylola's picture
lovelylola
Posts: 279
Joined: Aug 2009

Sherry my history is almost a duplicate to yours. Mother and maternal grandmother both with BC. I was 20 when my mother was diagnosed and knew from that point on it was only a matter of time. I did make it 21 years past my mother's age at diagnosis and 7 years past my grandmother's.
For me, at age 60, a bilateral mastectomy was the only choice. I watched my mother have first one breast removed and then 6 months later have it occur in the other and then have it removed. I didn't want to go that route. She survived 40 years after her treatments.
I still needed to have chemo, no rads though. The onco recommended the chemo based on my oncotype testing score - 33 and the size of my tumor - 2.2 cm.
I know this is a tough decision to make and will say a little prayer that you find peace with your final decision. Lola

BunnyJane's picture
BunnyJane
Posts: 212
Joined: Jul 2009

Your family history sounds similar to mine (Mom and Aunt with ovarian, Grandmother and 3 great aunts with BC). I started out with a lumpectomy to remove a ~1.4 cm tumor. I also had chemo. (scored pretty high on Oncotype test). After completing chemo., I knew that I could not go through a second round of treatment down the road, so I had a bilateral mastectomy. While I don't look the same, I feel somewhat relieved. It is a tough decision, but hopefully one of the last BC-related decisions that one will have to make. Good luck! Jane

Kathy09's picture
Kathy09
Posts: 99
Joined: Jun 2009

It took me 3 lumpectomies to get clear margins and I had some lymph nodes positive. I now wonder if I shouldn't have just done the mascectomy. I do know one thing for sure, If I would have done the masectomy I would have done the reconstruction immediately after.
I think if it was in the family it would help me make a decision. You just never know. Do what you feel is best for you and your life. Hope this helps

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