HELP! Lumpectomy or mastectomy

littletower

How in God's name do I make this decision. Have a 1cm. tumor that has already spread to at least three lymph nodes in the right breast. And two "suspicious" clusters with abnormal cells in the left. Do I do a lumpectomy with node dissection on right and surgical biopsies on left or just a double. Please, what do you all think?

nelia48

So sorry you have to make this decision!!!!!  Did your doctors suggest which would be better for you?   Hae you seen an oncologiest yet?  Gees!!!!  I'm sure others will be along soon to better help you out, but I would HATE to have to make that decision.  I was just told I HAD to have the mastectomy, no questions asked, no decision making.  I'm even sorry now that I didn't have BOTH taken off.  I hate the thought that it might come back in the other one and I'd have to go through all this again. 

You have in your signature line that you have mets????  Has it spread somewhere else in your body?  If that is so, I'd go for the double mastectomy.  Or are you referring to the node involvement as mets?

Hope you can get a really good, professional opinion so that you don't feel that all the decision making is up to you.

Let us know how it goes!

idaho

I would want to know if the "suspicious" clusters in the other breast were cancer or not before I had a mastectomy....How do they know the cancer has spread to your nodes?  Have you had surgery before?   Did they take some nodes and test them?    I don't know the answer but I hope you find peace... Tami

LindaSueH

I chose to have both breasts removed because my cancer was invasive, in 1 lymph node, and to be honest, I do not want to have to go through this again.  I, too, was looking for someone to tell me what to do, but the docs give your your options and it is up to you to make the decision that is right for you.  My surgery was June 4, and my first chemo was July 8.  I had tissue expanders placed at the time of surgery.  I am very happy that I made the decision I did.  You have to make your decision, and move forward from there.  I know for me, once I made the decision, I was at peace with it immediatley.

God bless you!

Linda

bridget7

I had to make this decision too. My surgery was on June 4, 2009. I had a  mastectomy after discussing this with my surgeon and my husband. I do not regret the decision I made, I just wanted it gone. I could always feel that lump - 24 hrs a day it let me know it was there. I just did not want to find out one had grown back again somewhere else in the breast. Now sometimes I worry it will happen to the other breast. Just keep praying it doesn't. You have to make the decision that  you are comfortable with - I went back and forth and back and forth - but the morning of my surgery I  listened to my gut, and it had been my initial decision from the beginning, I went with that.  Good luck to you.

terrij152

Littletower, I had a lump in the right breast removed by lumpectomy in April and then decided instead of radiation to have bilateral mastectomies especially since I had 14 other lumps between both breasts, that weren't suspicious, but if they changed at all they'd need to be biopsied.  I decided I didn't want to ride that roller coaster any more!  It was a tough decision to make, but the right one in the end.  I had my mx's 6/18/09 with tissue expanders in place and will have my exchange surgery in a few months.  Now that the big surgery is done, I feel so much better!!!

Good luck to you as you make this difficult decision!

lexislove

I think my decision would be based on my breast size and these other "clusters". I had a mastectomy, I was not given a choice because of the tumor size, but..in hindsight even if I had a tumor that was 2cm...I would have had the mastectomy.

I did not choose to do a double mastectomy.I was told that it was not necessary and my chance of developing a "new" BC in the other breast is 20-30%. Thats a lifetime risk...I can live with that risk, but another woman may not.

I would ask your onc about YOUR personal risk for a recurrence or developing a "new" BC in the other breast to help with your decision making. I know its hard...but do what you feel right! ~good luck~

Edit: Are you estrogen positive (ER+)? This may also play a big role in your decision making

cbm

Hi; here's my thinking if it helps.  I had bilat mx (modified radical on the left) July 08.  I was given a range of options from lumpectomy to mastectomy.  I had only one lymph node involved but did not know before surgery if there were more--was PET staged to IIa before surgery but that is always subject to change; mine didn't. 

I was large breasted (DD) and knew Id have to have reductions and resizings in any event.

I wanted to go into surgery knowing what I'd have coming out--no margin issues, no surprises.

I had a mixed tumor--IDC but with some ILC thrown in--ILC will show up in other breast.

Before I even got to surgery they were looking at other suspicious areas that turned out to be nothing, but I saw what the road ahead was going to look like and wanted as litttle breast tissue to worry about as possible.

I was not emotionally attached to my breasts; not being critical of anyone who is.  I'm 57; they were always painful.  I was more concerned about getting dressed--symmetry--than getting undressed.

My husband was fine with whatever I decided.

I didn't want radiation.  I don't know why.  It just came to me that I didn't, and when something like that shows up in my head I just pay attention and go with it. 

Some of this was instinctive more than logical; I'm happy with everything I decided, probably out of a high need for control.  My surgeon did not want to do bilateral mx and was really pushing lumpectomy.  I had to have plastics consult before they would agree.  I will have reconstruction after I'm done with Herceptin, in November.

I hope this helps.  My guiding principle was to eliminate as much risk and future drama as possible, period. 

Prayers go with you!

C

thegoodfight

I do not know how to "bump" a post I made and bring it here.  Does anyone know?  In the mean time I am now being faced with a mastectomy decision (being pushed by my onc) after having a lumpectomy, chemo and radiation and celebrating my first year cancerversary.

Since I do not know how to bump would some of you ladies be kind enough to go read my last two posts in this same topic heading (IDC) under the subtopic of I CAN'T GET OFF THE ROLLERCOASTER.  I would appreciate some input, since my husband and I are both reeling from this newest info.

Thanks so much,

Caren

kellyless

Were you tested for the BRAC genes?  That could help make the decision as well. 

thegoodfight

Yes, my BRCA's were negative.  What happened is my first diagnosis last July was a 3.5 centimeter tumor.  Then in September I asked for a breast MRI because I really wanted to check the other breast since this large tumor never showed in my yearly mammos even after we knew it was there, and the bs estimated it to be 7 to 10 years in the making.   Well the MRI showed something in both breasts and I had to go through biopsies, the ugly kind with wires then surgery.  Well the other breast was not a problem but the breast I already had been dx's showed another primary in another quandrant of the breast.  Much smaller and 90%  DCIS, so no one got overly alarmed and said my treatment would take care of it.  I proceeded with chemo and radiation.

Now the onc is saying he feels I have breasts that make cancer and somewhere down the line it will likely happen again.  He feels semi annual testing will drive me crazy and be too much stress and the worst is they don't find all cancers in time.  Yes, it makes for a good argument, but.....................WHY WASN'T HE MORE EMPHATIC A YEAR AGO?????????????

I am not doing anything, at least not now, except hearing him out, and going for a second opinion at Moffit Cancer Center.  I will call for that appt tomorrow, but will probably have to wait awhile.  I haven't even addressed the problem of insurance,and would they now cover a double mastectomy after I chose another treatment?

In the meantime, I am going to enjoy the good results I got today, and I am going to Philadelphia next week for a glorious week with my 14 month old grandson.  That is my priority today.

If the disease doens't make us crazy enough, the doctors will.

Caren

nene2059

Hi everyone.  I know the decision to have lumpectomy or mastectomy is personal and different for everyone but I just had a bilateral mx three weeks ago (after neoadjudavunt chemo) and I am soooo glad that I did.  I had made the decision to do so at the beginning of treatment (and before I knew that I had IDC in both breasts).  Once I found out that I had cancer in both breasts I figured my breasts must make cancer and I never want to deal with it again.  I started recon at the time of my surgery and I am already happy with the result and I have not even had a post surgery expansion yet.  It is amazing what the doctors can do with this surgery whether you have recon or not.  It is a major surgery and it is a major decision but I woke up from surgery completely at peace with the decision.  Three weeks out and I am active and not in pain.  Some women find that they mourn the loss of their breasts and I can understand that completely but since I felt betrayed by mine and to be honest I am looking forward to the new ones being symmetrical and perky, I did not go through that. Good luck to all and best wishes,

Jenn

oops I also wanted to add that I am BRCA neg., had all neg lymph nodes, stage 1 in left, stage IIa in right and double lumpectomy was an option just not in my mind.

thegoodfight

Jenn,

First of all my oldest daughter's name is Jenn and you and she are some of the few that use two n's.   Funny we never thought of using one n and most Jenn's do.

I hear everything you are saying and I would be feeling differently if my onc had come as strong a year ago as he is now in terms of a bilateral  mx.  He did "suggest" it then, but when I asked why he said just so I wouldn't have so much stress from constant testing in the future.  He did agree with the other oncs on the case who said the risk for survival was no better with the mx then with the course I took...............lumpectomy, chemo and rads.

Now he is saying loud and clear that is true for the cancer we have treated, but he wants me to do it preventively for any future cancers.  I wish he would have been this adament a year ago.  I would have been healed from surgery, maybe completed reconstruction and would not have to have had the 35 rad treatments.  I feel I went through a lot that I didn't have to if I was having a mastectomy.  Yes, I am feeling a little angry about this.  I am the one who went through the treatment, not him.  And my husband and kids endured it also.  And now here we go again with no evidence that I have or will have cancer again??????????

So it is a huge curveball.  I will meet with him, my rad onc and my second opinion onc up at Moffitt Cancer Center in Tampa.  Hopefully a decision will be clear and I will be at peace with my decision.

I do not feel there is any urgency,  so I am finding out what I need to so I am comfortable.

Caren

thegoodfight

Jenn,

Is your picture from a Komen walk?  I did the Florida one last Spring and in September I am walking with my girls in the one in Central Park in NY.

It is such an awesome experience and even more so as a survivor!

Caren

MRSROCKYTOP55

I had two tumors on the left, one was IDC, one was ILC.  I live in Costa Rica and have ins. through the government system.  A mastectomy was suggested but then 10 minutes before surgery there was a change in my surgeon and it ended up being the chief of oncology.  He came in and examined me and said that my breasts were large enough that they could do a quadrantecomty.  They also did a biopsy on the right which was negative.  I have had chemo, then on to radiation and Herceptin for a year.  I at first just wanted a bilateral mastectomy so I would not have to worry.  But, I have not been sorry for the decision and tend not to be a worrier and just take things as they come.  The decision is different for everyone and you have to do what you are comfortable with.  God Bless, Kathy

thegoodfight

Kathy,

I had done a lot or research before I made my decisions last year, and was quite comfortable with them.  I knew I would have to be vigilant for the rest of my life and probed, etc.  I also knew that the day "might" come that another cancer rears its head and that a mastectomy may come into play at that point.  But, I  have been caught totally off guard by this development.  Like I said, I am just beginning to enjoy the fruits of my labor and really enjoying life again.  Now this.

That is why I have to listen to some other medical opinions before I make any decisions.

Caren

nene2059

Caren,

I love that your daughter uses two n's as well it never occurred to us either to use one.  My picture is from a Komen walk, two weeks after my last chemo in Raleigh, NC and you are right about it being a wonderful experience.  I did not get emotional all day, even though my friends and husband were in tears several times that day, until the survivor parade and then I totally lost it! It was a beautiful, moving experience and I plan on doing several more.  I completely understand your anger and frustration with this decision.  It is a major surgery and recovery and you could be done with it all by now!  Good for you to get a second opinion and take your time.  Even though I had the bilateral it does not guarantee no reoccurrence.  When I told my surgeon that we had discussed it and wanted bilateral with recon he just about jumped out of his chair with excitement.  I knew then that it was what he was hoping for us to decide but he could not push.  I HATE that this was pushed on you now.  Do not let this keep you from enjoying your fabulous family and life.  Enjoy the fruits of your labor, you have earned it.  You can always make the decision IF and when something were to come along.  I know survivors in both groups so find peace with your decision whenever it feels right for you to make it.

Best wishes,

Jenn

Kate2z80

Why don't they biopsy the left areas first?  That way, you'd know what you are dealing with.  Seems like they're asking you to make a decision without all of the information.

I just had mastectomy for a 1cm tumor (IDC) and another suspicious area.  Was offered lumpectomies, but chose to remove as much as possible, instead.  Although the second suspicious area turned out to be benign, another area of DCIS was found and removed, which may not have happened if I had chosen lumpectomy.  I would still be fine with the mastectomy decision if only the one cancerous area existed and have no regrets at all.  The surgery was not bad and I'm very pleased with the reconstruction so far (still have the tissue expanders in and only me or an expert would notice the difference when a bra is on).  I thought I would never care about having a breast removed (always thinking, "If I get breast cancer, no question I'd have mastectomy"), but it turned out that I cared quite a bit.  I had a good cry and then moved on.  Even with the tissue expander, it looks good, I don't notice how it feel 95% of the time and I have the peace of mind that comes with knowing that I took the most conservative route.  My surgeon told me that there is a 1% chance of recurrence with mastectomy vs. 12% with lumpectomy.  Some people will say that it's actually a much lower number than that, but with two young kids, I felt that accepting even a 1% greater increase was a luxury that I could not afford.

I hope that I'm not being too opinionated here, but I have no regrets at all and God forbid it should come back, at least I won't torture myself over this decision.

Kate

ShellyJo

Had neoadjavant chemo, Post chemo MRI showed no signs of cancer anywhere so I went the suggestion of my surgeon and had the lumpectomy and axilliry node dissection seeing i did have needle aspiration at time of biopsy and came up positive in one node. When path came back there was tiny spot of DCIS in breast and .04 size tumor in one node. What worries me is that MRI didn't pick up the node or the DCIS. The original cancer is done with. Mets are in God's hand with that. But I couldn't even entertain the thought of a new cancer down the road if I can prevent it. So I went back in May of this year and told them I wanted them off! I had MRI prior to surgery all was clear but I was a wreck the whole time I was in there. Post trauma was never explained to me. I had immediate reconstruction on July 8th and have a huge weight off my shoulder. I would rather do this now than in 5 years when something suspicious shows up and I would have to do it later with a side of Chemo. Good luck with decision. In my eyes they are only boobs and in my opinion more trouble than they are worth. we do not need them to function, so why take the chance?

ShellyJo

Oh and btw, I just had my routine visit on with my Oncologist and he totally supported my decision. 

thegoodfight

I am not sure if the last couple of comments were for my benefit,and if they were I need to clarify some points.  I was dx'd a year ago.  I chose a lumpectomy, chemo and rads and now I am arimidex since I am er/pr positive.  I agree with you ShellyJo, that I cannot change anything about that cancer and the treatment.  If mets are in my future I cannot change that.

At the time of the decision, everything pointed to the treatment I ultimately decided on.  I had clean margins and no lymph node involvement.  Granted they did find a second cancer in the same breast through MRI and biopsy before I started my chemo.  But I had already had the lumpectomy on the initial large tumor two months earlier and the second one was removed with clean margins just with the biopsy.  My radiation oncologist said if I hadn't had the MRI and we were not aware of the second cancer it would have been taken care of with the radiation that I received.  So I was very comfortable with my chosen path.

Now my med onc is really pushing for a prophylactic double mx.  I have no evidence of disease at this point.  Just had a digital mammo and all was clear.  Will have an MRI in 6 months.  In the mean time I will research, talk to all my doctors and probably decide after that MRI.  Obviously if it shows anything, I will run toward the nearest OR and take the boobs off.  On the other hand, after going the course of treatment and appearing to be doing so well, it is hard to just go lap them off for a "just in case" scenerio.  I also was BRCA tested and it was negative.

Caren

ShellyJo

Do what you feel is best for you. But now that all is said and done and I am healing nicely. I am digging the perky youthfulness of my implants..So it aint all bad, this reconstruction thing. I am discovering a whole new world of blouses I could never wear being a large C small D all my life.

 On a side note, I am negative with the BRCA genes too. My oncologists says cancer can run in families with oorur without the genes. And my obgyn onc ( I consulted about ovaries) said there was 10 genes and only 2 are ever tested for...I will be getting my ovaries removed since my paternal aunt died of ovarian cancer. No rush but within next year..