lumpectomy with radiation vs. mastectomy

orlee

Hello Ladies,

Today is my first time on this site, and I appreciate your honesty and thoughtfulness in sharing your experiences.

My Left breast cancer was diagnosed at the end of May 2015.  I found it, mammo, ultrasound and MRI confirmed it.  I am fortunate: around 2 cm, Invasive Intraductal Carcinoma, ER+/PR+/HER2-.  I have been told by 2 surgeons in 2 different states that I am the person lumpectomy and radiation (whole breast not mammosite because of location) was meant for.  "HOWEVER, neither one would dissuade me if I chose mastectomy".  Things got a bit murky because the MRI showed a Right breast mass that was an intraductal papilloma.  One surgeon told me to "get rid of it" at the same time as the cancer in the opposit breast.  The other surgeon said no need.  MRI report says repeat MRI in 6 months.  As so many of you articulate and educated women have said in different ways: Do I have to go through this every 6 months.  Can I find peace of mind in those 6 ?  Then what if they want to biopsy  again.  My family has many more incidences of breast cancer than one would expect to find if they were random occurences, yet our genetic testing is negative.

My husband hears all of the positive information.  He is a data/math guy who once he heard that the mortality rate for lumpectomy with radiation was the same as mastectomy (without radiation), and that the difference in recurrence rate was only about 5% difference he doesn't understand why I would go with a more aggressive/definitive surgery (bilat mastectomy with simultaneous reconstruction).  Intellectually I know that ultimately the only one whose decision that matters is mine.  Initially,  I was feeling very clear that I wanted the mastectomies and reconstruction.  I was also extremely calm, thoughtful and reassuring to everyone else.  As time has extended from diagnosis to surgery date of July 14th, I have more doubts about my choice, I am more anxious and worried.  I have started to doubt myself and my motivation for my choice.  Once I go aggressive I can't go back.  I am 54 and healthy.  However, the surgery is around 8-9 hours long (I'd be having the DIEP autologis tissue transfer procedure).  That is a long surgery: lots of time under anesthesia.  That means more risk.  The recovery, as I understand from the nurse navigators and blog posts is a rough one.  There is also the chance that the transfer of tissue will fail (though I am told my surgeon has a <1% failure rate).  Also, depending on what the nodes show and what the oncotype, I might end up needing Radiation and chemo anyway.  This is alot of information to process, alot we still won't know at the time of surgery....

I feel ambivilence about electively losing my nipples--I will miss the sensations that only they can give.  The reasons I wouldn't do nipple-sparing is that the nerve endings are cut severing the sensation anyway, and the whole reason for doing the prophylactic mastectomy is to decrease risk of recurrence in same breast and a new cancer in the other breast--leaving the nipples means possibly leaving a source of malignacy.  Can any of you tell me about "breast sensation" after DIEP?  Has anyone experienced "post-mastectomy pain syndrome". How about life after DIEP?

 I have 3 amazing daughters, one of whom is still living at home, one of whom has a heart condition that may  a need special procedure in the next several months, and a husband who loves me deeply and is terribly frightened of losing me.  I work outside the home and dream of being stay-at-home grandmother eventually.   I am fearful of putting myself at unnecessary risk (serious elective surgery). My head feels like a ping pong ball going back and forth over the net.  I don't sleep well, because I have stressful anxious dreams when I do. The less sleep I get the more anxious I feel.   There are moments off "clarity" when I feel that the mastectomies/DIEP is the way to go and others where I wonder about whether I am rational--Does it make more sense to have lumpectomies first then see the recovery and how I feel about my decision--I can always do the mastectomies before I would have to start radiation/instead of the radiation ( I can always go forward, I cannot go back).

I appreciate the time you have taken to read this and look forward to  reading your  thoughts and experiences.

Orlee

 

disneyfan2008

Welcome Orelee (love the

Welcome Orelee (love the name)

 

Denise

joannstar

I chose lumpectomy for

Stage 1 TNBC, Grade 3, no nodes. My surgeon said that the statistics for survival was about the same between mastectomy and lumpectomy with radiation (I had a second surgery because they did not get clean margins in the first one). Because I am TN, I also had 6 rounds of chemo. I am approaching 5 years of NED (no evidence of disease) on 8/19/15.  I was a 4 month newly wed (at 57 years old) and working full time at diagnosis. I did not have the time or energy to have a more complicated surgery. My husband came with me to my appointments and he and I trusted my surgeon. 

Do I worry about recurrance--yes especially around doctors' appointments. Do I think I'd worry less if I had a mastectomy--maybe. The trouble is that they do not take ALL of the breast tissue so it is possible still to have a recurrance. So in my opinion, there has to be a better reason to have a mastectomy because the worry may still be there.

This is a personal decision that is very difficult to make.

Good luck to you.

JoAnn

 

disneyfan2008

I have had 2 lumpectomies ,

I have had 2 lumpectomties , on the same side. first time a lumpectomy due to DCIS-follwoed by radistion,

 

A few years later, I had teh 2nd one-due to unsure of something on mammo-but thnakfully it was only scar tissue.

 

I was not given or choise or options given-other then lump/ aka partial

 

 

Denise

Double Whammy

disneyfan2008 said:

I have had 2 lumpectomies ,

I have had 2 lumpectomties , on the same side. first time a lumpectomy due to DCIS-follwoed by radistion,

 

A few years later, I had teh 2nd one-due to unsure of something on mammo-but thnakfully it was only scar tissue.

 

I was not given or choise or options given-other then lump/ aka partial

 

 

Denise

Decisions

Of course, only you can make the decision.  What I read from your message is that your breasts (and your nipples) are important to you.  I assume this is why you would opt for DEIP reconstruction if you have a mastectomy.  Right?  You also note that the survival rate and recurrence rate is pretty equal for lumpectomy with radiation and mastectomy w/o radiation.   I weighed all of these same decisions 5 years ago and while I was older, my breasts were still impotant to me and I wanted to keep them if possible.  I was also willing to have a mastectomy (without reconstruction) if this was the best option for me.  I chose lumpectomy and radiation (and I also had chemotherapy).  I do not regret this decision. 

You need to know that not all lumpectomies turn out well cosmetically.  I was lucky.  My tumor was on the underside of my breast and that breast was larger than my other one.  I had  sort of a mini-breast reduction, with a larger chunk of tissue removed and oncoplasty performed at the time of surgery.  It actually looks pretty good, but it is rather flat on the bottom and there is what I call the Grand Canyon that I can feel where the surgery was performed.  I do think I had an excellent result, tho.  All of the cosmetic issues depend on where the surgery is and how big a chunk of tissue needs to be removed, and what else the surgeon does. I feel pretty lucky that my surgeon listened to my concern about that breast being so much larger than the other and immediately honed in on what could be done to give me a "matched set" for the first time in my life! 

 Reconstruction also does not always look right and, as you mentioned, you will not have your nipples.  DEIP procedure is a long surgical procedure and recovery is long.   Not all of the breast tissue can be removed with mastectomy, but almost all of it is.  It's really a matter of personal preference if you are a good candidate for lumpectomy vs. mastectomy.  Many women on this group gain more peace of mind in having a mastectomy and that is very important. 

Decisions are also often made based of the size of your breasts.  If breasts are small, a lumpectomy may take too much tissue and what remains won't be much.   Your surgeon should be able to advise you about these issues.

I don't know what I would do today, but this is the route I chose 5 years ago.  And it has worked well for me.  Of course, I would give up my breasts for my life in a heartbeat and if my cancer had not been early stage, low grade, I would have definitely done that.  I always thought I'd say 'take them both off, please", but it isn't what I did when I was diagnosed. 

Good luck on your decision.

Suzanne

orlee

post-op follow up

ladies,  so many ratop all and well thought out decisions.  I took the cowardly route opting for lumpectomy with sentinel node--I meet with the radiation oncolonist in a week.  I decided I could change my mind up until the start of radiation.  I am touched by the idea that decisions shouldn't be made out of fear.  Fear is new to me--and doing the most drastic thing seemed like the only way to free myself from it.   I appreciate your wisdom.

Orlee

 

button2

orlee said:

post-op follow up

ladies,  so many ratop all and well thought out decisions.  I took the cowardly route opting for lumpectomy with sentinel node--I meet with the radiation oncolonist in a week.  I decided I could change my mind up until the start of radiation.  I am touched by the idea that decisions shouldn't be made out of fear.  Fear is new to me--and doing the most drastic thing seemed like the only way to free myself from it.   I appreciate your wisdom.

Orlee

 

Welcome Orlee

I'm glad you seem to have made a decision (it was a tough call). Just wanted to point out that there is no such thing as a "cowardly route". You are a warrior like all the other pink sisters. Wishing you a speedy recovery, Anna

Shinu85

Mastectectomy

hello

i found out I had IDC in june. stage 1 er/pr +/her2-. genetic testing positive so i had to do mastectectomy.  i had double mastectomy six weelse ago and I have the expanders put in. First three weeks was very difficult for me. lymph nodes negative so no radiation. Oncotype high so I need 4 rounds of chemo then need two more surgeries. If you have more question regarding mastectectomy please ask me. 

Ace44

orlee said:

post-op follow up

ladies,  so many ratop all and well thought out decisions.  I took the cowardly route opting for lumpectomy with sentinel node--I meet with the radiation oncolonist in a week.  I decided I could change my mind up until the start of radiation.  I am touched by the idea that decisions shouldn't be made out of fear.  Fear is new to me--and doing the most drastic thing seemed like the only way to free myself from it.   I appreciate your wisdom.

Orlee

 

Not cowardly

I did a lumpectomy to get my dcis and and was supposed to do radiation but have decided that I can't stand the thought of looking over my shoulder the rest of my life...going through all of the additional tests and biopsies. I think whatever decision you make has to suit you and what gets you through comfortably. I have a 5 year of daughter and am opting for the most aggressive treatment I can so that i can be with her as long as I can be. All of my decisions have been made out of fear and I don't regret any of them. At least with your lumpectomy you can relax a little knowing that your cancer has been removed. That has helped me so much to make the rest of the decisions regarding the coming mastectomy. I wish you much luck as you gpo through this process. Wishing you good health to come.