Just diagnosed, need help with decision making

NanciAnn

Hi,

My name is Nanci and I was diagnosed May 16th. All all of you know this has been overwhelming. I'm so confused. I've read through many posts about lumpectomy vs mastectomy and see so many people say it's a personal decision. I really need to hear from others that had a similar DX as me. My doctor says a double mastectomy would give me peace of mind but of course I have the option of lumpectomy with radiation. I feel like double mastectomy is overkill for a case like mine but that is kind of the way I'm leaning. Please, if you could share your opinion I would really appreciate it.

what i know so far

Tumor 4mm

Blood markers normal

MRI clean

Only 1 enlarged lymph node - node biopsy came back negative for cancer.

Pet scan - 2 lymph nodes lit up but could be a result of the doctor poking around during the node biopsy.

Her2 negative

Estrogen positive

Jenwith4kids

hi Nanci,

Sorry to meet you like this....the first weeks of a breast cancer diagnosis are the worst!  Lumpectomy v mastectomy is a very personal decision.  It doesnt change survival rates,  but it does change the chance of recurrence. I'd hesitate to do anything short of a mastectomy given questionable nodes.  I also had enlarged nodes with negative results at biopsy - final pathology after surgery confirmed cancer.  Doesnt mean you cant do the lumpectomy and then go back after for a second surgery if necessary. 

Do you know what kind of cancer? IDC, DCIS....etc?

I'm sure some others will be along with more insight.  I dont feel that there is "overkill" when it comes to this.  My feeling is do everything you can so you dont have to do anything later.

Good luck!

Jen

BrooksideVT

Funny, I just posted my experience with this on another thread.  I was so torn between treatment choices!  I chose lumpectomy, considering it more of a surgical biopsy, thinking I really wanted double mx with DIEP reconstruction, but did not want to wait until BS and PS could get together to do the surgery.  As it turned out, I was happy with the lumpectomy.  If you have the lumpectomy with sentinal node biopsy, you will have additional time to process the zillion treatment options they throw at us, allong with a pathology report that gives you a clear idea of exactly what is happening in your breast and nodes. 

I'm wondering why your BS indicated that a double mastectomy would give you peace of mind?  Statistics indicate similar long term outcomes for mastectomy and lumpectomy plus rads, and most docs stand firmly on the stats.

momand2kids

Nancy

welcome-- sorry that you are here but this is a good place to be.  I am not an MD-- but your dr. suggestion does seem like overkill--and remember, mastectomy does not completely eliminate your risk.  From what you have posted, your tumor is small, there is no node involvement-- I think the one other pieces of info that you need is the type of BC, the grade and if it is invasive, an oncotype test to give you some more data…. 

If it was me, I would have the lumpectomy, sentinel node biopsy and get the actual information post surgery--then if you need to make other decisions you can.  I had a lumpectomy 5 years ago for ILC-no nodes--- it was the right decision for me and I have never regretted it.  In the end, the decision has to be one you can live with.   

Best of luck

NanciAnn

my doctor said it would give me peace of mind because there is a lower chance of reoccurrence. He did go over the fact that the survival rate is the same for all of the options. 

Anyone know why you have to have surgery before they can determine oncotype? I would think it could be done on the tissue removed in the biopsy.

ChaosRains

Nanci, 

So sorry to hear that you are struggling with this...   I can't answer any of your questions unfortunately because I'm new to the whole BC thing myself, but in the short time I have been here I have met the most supportive wonderful people ever and I'm sure some of them will chime in! 

Just remember to breathe ! 

Hope things go well for you

Moderators

Dear NanciAnn, Welcome to the BCO community. We are sure that you will find wonderful support and helpful information from our members.  As you make your decision you may also want to check out some of the information pages on our site. Here is a link that may offer additional thoughts as you take your next steps. Mastectomy versus Lumpectomy  You will be in our thoughts and please continue to let us know how things go for you. The Mods

momand2kids

Nanci

they really need the full picture-- which is why they need to get the tumor out and get it to pathology--- a biopsy just takes a very small amount of cells.... you really need more information which is why the surgery is important--pathology will tell you alot-size, stage, grade, HER, ER, PR..... and that would really help you make treatment decisions.  best of luck--keep coming back-people here will help you.

Rosiesride

Nanciann...just made my decision about keeping lumpectomy...my general surgeon had said if it were her, she would do bmx...I really like her and she did a great lumpectomy, clear margins, 3/11 positive nodes...her saying bmx with reconstruction did not sit well with me...I had 6 months chemo, and will finish next Monday (woopwoop).....she told me during chemo to do all my research, visit plastic surgeon, radiation onc, talk to MO...I also got 2nd and 3rd opinion from breast surgeons...and they met with tumor board...ALL of this over months led me to my decision...you will know so much more after surgery...she thought originally I would have lumpectomy then radiation...then found positive nodes during surgery so things changed....it really is a personal decision, where you are in life...how you can deal mentally with it all...definitely visit the mastectomy vs lumpectomy board...good luck and this is a great support site! Rosie

Rosiesride

nanciann...also, I felt like I would start with lumpectomy especially if doc said it would be fine to do that...for me, if in the future things changed, I would then revisit mastectomy...from your post it seems you didn't have any surgery yet?   Someone else also said they find out much more after surgery...sentinel node biopsy, etc...

Tomboy

you can always start with lumpectomy, and then do mastectomy later. wishing you the best of luck! i had lumpy, and can always do a mastectomy later! that is how i made my decision.

vbishop

Once again, odd man out here.  I have ILC with multiple tumors.  Although I was not given a choice, I still would have asked for a BMX.  I don't regret having it all...and there are several like me that prefer the mastectomy over lumpectomy any day of the week and twice on Sundays.  Why?  The reasons are many but sometimes it's as simple as not wanting to go through radiation and all that means.  Sometimes it's a matter of peace of mind. Sometimes age comes into play.  Sometimes the importance one puts on ones breasts comes into play.  Me?  My boobs never defined me nor were they ever a "big" part of my life.  I mean, we're not talking about a penis here.  We all know the answer to that one if we were men and talking penises.

 

 

 

juneping

i had a UMX not by choice, my BS told me she could not save my breast.

i think it's a very personal choice, bc only you have to live with the choice. the thing about lumpectomy is you have to do radiation which is mon thru fri for few weeks. personally i don't really care how advanced rad has gone to, i don't care for rad. but lumpectomy is a smaller surgery and your recovery time should be a lot shorter. for me it's the ALND that really made the recovery time unpleasant - couldn't move my arm much and the physical therapy (from hand out) afterwards.

Infobabe

Nanci, this is just me and what I would do if I were in your situation.  

First, 4mm is really small.  There is world of difference if it is DCIS, non invasive, or IDC, invasive.  DCIS with a clear MRI would be excellent.  There is no doubt in my mind that I would have the lumpectomy first, regardless.  I can only speak for myself but the lumpectomy was a piece of cake especially compared with the core biopsy.  A mastectomy is forever and also means taking nodes.  You don't really know what you  are dealing with without the lumpectomy.  First things first.  Don't bite off too much to begin with.