Decision Time - Need Advice

jra40 · 06-01-2011, 05:42 AM

I am down to one more cycle of Taxol and Herceptin which will finish on June 28th. I have my MRI scheduled then will be meeting with my surgeon to decide on what type of surgery I will be getting. He wants to save as much as my breast as possible but I still feel like going with a double mastectomy to cut back on recurrence.

This is where I really need advice from all of you that have been through the experience. I have seen some of you having a lumpdectomy but then having to go back for a mastectomy. I do not want to go through this again in the future and if a mastectomy will cut the recurrence rate then I really want to consider it.

Any advice for me would be greatly appreciated!

NanaJoni · 06-01-2011, 06:34 AM

There are lots of things to consider with this huge decision. You are very young - so if you do mastectomy you will be looking at several more surgical procedures for reconstruction. Also, how much tissue would be removed for the lumpectomy - will you have a normal looking breast? You don't have any info on your signature re your stage, type, grade, nodes, etc - these can also factor into recurrence probabilities. I am much older than you so I elected to have a double mx with no reconstruction and, even now, I sometimes have fleeting moments when I wish I'd had reconstruction. I've had some complications with pulmonary emboli that prevent me from having elective surgery and that option is no longer available to me. I'm sure some of the other women on the forum will give you good advice but don't rush the decision until you have all the info you need and feel comfortable with what you choose.

06-01-2011, 08:45 AM

10 questions to help you decide:

http://breastcancer.about.com/od/tre..._v_lump_qs.htm

BonnieR · 06-01-2011, 10:52 AM

Joni brought up some very good points. Like her, I am older and opted to not have reconstruction. I also had a double mastectomy but that is because the cancer in one breast was scattered and a lumpectomy would not take care of it. The second breast had "suspicious areas"and because of that, I chose to have it removed. My case was presented to two cancer boards, too, where the consensus was to go with the bilat...
I dont regret the decision but, like Joni, I have my moments when I do miss my breasts!
The word "conservative" has two meanings to me. One is to take as much away as possible. The other is to save as much as possible. I guess you have to decide which sort of conservative you want to be.
I recommend you post more details as suggested so that the more experienced board members can offer input.
Keep the faith.

06-01-2011, 11:51 AM

Thank you ladies for the feedback! Forgive me but I do not really know all my stats that well:

Stage 2, 4.5cm tumor in right breast, ER+ PR+, HER2+, they did a biopsy on one of my lymph nodes that they saw on my breast MRI back in December and that came out negative. They are doing surgery in August so we'll know then how many nodes are affected.

adelay · 06-01-2011, 01:33 PM

I had a lumpectomy to begin with and although I had clear margins my oncologist thought it best to have the mastectomy after reading my path report and seeing how many nodes were involved, being triple positive and being so young at DX. When I had completed my chemo but before radiation I had my mastectomy surgery. My surgeon said I had clear margins and didn't think the surgery was necessary. Didn't know what to do so I went for another opinion at OSU's James Cancer Center and he agreed with my oncologist and deep down it was what I wanted too. I went ahead and had the mastectomy, just on left side. They found no residual cancer at that time which was wonderful. I am happy with my decision as there are no more mammograms on that side and I fear recurrence less now that it is off although I still know that is a possibility. I have decided not to have reconstruction at this time, maybe someday. I had a lot of rads and burned pretty badly so that may not even be an option for me. Not sure any of this helps but just wanted to explain why I first had the lumpectomy and then went back and had the mastectomy. It was the right choice for me. Good luck and keep us posted.

tricia keegan · 06-01-2011, 03:17 PM

I had a lumpectomy with rads which gives the same overall survival prognosis as a mast although the risk of local recurrance is slightly higher. I live in Ireland and there are'nt as many masts done here as in the U.S and most Dr's will try to avoid a mast unless unavoidable. Its a tough decision but so far it's worked for me and I'll be six years out later this month.
Good luck with whatever you decide and do remember even with a mast a recurrance is possible!

chekmark · 06-02-2011, 06:03 AM

Wow tough decision. My experience was brutal. My surgeon said that I did not need a mastectomy and my oncologist said that I did, this went back and forth for a week and 5 minutes before my surgery it still was. I ended up with a mastectomy (right side only) and when it was all said and done my surgeon said that I would have needed reconstruction anyway due to the location. All clear after surgery but I have often wondered if I did the right thing. I have not had recontruction yet as my oncologist wants to wait until I am finished with the herceptin ( Nov 11). I cannot go back so I have learned to live with my decision but still struggle. Really think it thru. I thought I would not have trouble with self esteem but I have. We all handle things differently. My husband has been great thru this whole process and said that he doesn't care if I have reconstruction but I need it for me. You will make the right choice no matter what it is. There are no guarantees either way, we just try to stay positive and move on. Easier said than done since I dwell on recurrence. I have looked into reconstruction and decided that I did not want the muscles removed from my stomach and more scars and if my plastic surgeons says it is ok I am going with an implant with expander. I have read good results with that one. It is your decision.Good luck to you and god bless you.

Louise O'Brien · 06-02-2011, 11:30 AM

I have a friend who just had a double mastectomy on Tuesday. She was Stage One. More on that later. The surgeon and plastic surgeon worked together. As soon as the mastectomy was over, the ps moved in to insert implants. Her nipples were spared. The total operation only took 2 1/2 hours and she's thrilled. I talked to her today. She's in no pain and is just waiting for the drains to come out.

Reconstruction surgery has come a long way in the past few years. There are options available now that weren't even available to me three years ago when I went through reconstruction surgery.

She originally had a lumpectomy but because she had extremely dense breasts, they found another tiny tumour that didn't show up in any of her tests. And they found something in the other breast. BTW - she didn't have any discernible lumps - it was a pattern of calcifications.

She was still Stage One because everything was caught early and it hadn't spread but she opted for the double mastectomy on the advice of the oncologists she consulted. Basically they feared that because her breasts were so dense and because it was in both breasts, there would always be the concern that there might be something that they couldn't see. That treatment might not "get it all".

So stage or grade is not the only issue.

snolan · 06-02-2011, 11:32 AM

I was origonally dx with DCIS, had to have a mast due to the area that was involved thats when they found the HER2+ stage I. I elected from the start to have a bilat mast so I would decrease my risks of having to go through this again. I chose to have reconstruction with it with expanders. Unfortunalty after surgery they determined that the DCIS was too close to the skin and I would need radiation. My plastic surgeon recommended taking the expander out on that side but my radiologist recommended to leave it in. When the drains were pulled it got infected and they had to take it out anyway. I too am young 41 and still want to have breasts. I will be having the muscle from my lattissimus muscle instead of stomach transfered. I still get to have the other side done with the implant as it had no problems. Like the other ladies stated you have to go with what you feel is right for you. I have met a lot of people who have elected different things and each had their own reasons for doing it. There is no wrong descision as long as you are healthy. I don't look forward to the reconstruction surgery but know in the long run I will love having breasts and thats what is right for me. Hope this helps, and good luck.

Louise O'Brien · 06-02-2011, 11:42 AM

Checkmark: I did the same thing you did - chose to have a mastectomy of one breast over a lumpectomy. The one thing you should try not to do is second guess yourself. After I found out I was HER2 positive, I was happy I made the decision I did.

I always say that was the right decision for me - but I respect the fact that everyone has to make the decision they're most comfortable with.

I found though, both through my experience and that of my friend, that the oncologists were the ones whose advice I depended on. Not the surgeons. The oncologists are the ones who are up to date on the studies, statistics and treatment options and they also have the figures on recurrence.

I had reconstruction surgery (Diep flap) three years ago but the plastic surgeon suggested I wait six months after treatment. And I had a reduction on the remaining good breast.

There are big changes though when it comes to reconstruction surgery now and more choices than when I went through it just a while ago.

Try, if you can, not to agonize over the decisions you made. You felt it was the right decision for you at the time and you shouldn't look back.

Jackie07 · 06-02-2011, 12:47 PM

I've always regretted not to have insisted on a mastectomy when I was first diagnosed in 2003. Her2 is aggressive. The statistics (that lumpectomy + radiation = mastectomy) cited by surgeons (like mine did both when she was talking me into having a lumpectomy and later in an upset tone when my recurrence was finally discovered. She's a specialized breast surgeon) really doesn't apply to us Her2 gals.

Almost 4 years after the lumpectomy and radiation, after I'd lost three jobs in three years (very fatigued at work - always thankful that the minor accidents I'd had were not 'on' Interstate Highways), I finally requested an early mammogram through my breast surgeon. She confirmed those so-called 'scar tissues' interpreted by other doctors in the prior three years were indeed cancer recurrence.

Several members have 'reexcisions' listed in their sigature (treatment history.) If you read the story of Susan G. Komen, you'll know the horror of failed surveilance. She'd gone to doctors again and again, always was told her mammogram was clear (she had dense tissues)... until it's too late.

Why take the risk?

[I tested positive for BRCA1-VUS even though my medical oncologist had not thought it was probable. I'm the youngest of my family, but I was the first one to have experienced major surgeries (for brain tumor - unrelated to BC) After Mother and 2nd Brother's cancer diagnoses and treatments, it became clear that cancer runs in my family [HNPCC] ...

Estelle · 06-02-2011, 01:32 PM

This is a really personal decision. I had a lumpectomy and bilateral reduction (I was large), but when the path report came back with 10 + nodes (Stage 3c) I changed my plan. My cancer was very small .7 cm and another 1 cm in the same duct -- only detected in a mammogram. I figured if some that small did that much damage, the ladies just had to go. At the time I opted for no reconstruction -- I was only interested in finishing my treatment as soon as possible, without any possibility of complications from reconstruction slowing that down. But I had 10 positive nodes and considered myself blessed that it had not already spread. I have not regretted my decision, although now (2 years NED), I am thinking about maybe some reconstruction. I'll probably wait another year before deciding. Bottom line -- have a conversation about options down the line if you opt for a mastectomy and no immediate reconstruction now. I'm 61, I didn't think I cared at all, but surprise, I do care -- at least a little.

Hope this helps.

Blondie · 06-02-2011, 03:09 PM

Hi,

A very difficult decision to make. 10yrs later I had a recurrence / new primary!! I was 32 when first diagnosed, single and very fearful. I went to one of the best surgeons in our area who did a wonderful partial mastectomy-my breast looked no different. Had radiotherapy.

When I was not happy with the supposed "beneign calcifications" I elected to have a mastectomy. I researched about reconstruction after radiotherapy and went to several plastic surgeons- all had great concerns because I had previous radiotherapy and could affect successful outcome. This is because skin does not heal and over time the skin shrinks which causes huge problems with implants- contractures.

I chose quality of life, mastectomy and no more surgery and I am planning having mastectomy next year. No more cancer for me!

So, if you are having radiotherapy, think about it very carefully. Because if you ever need a full mastectomy and want reconstruction, it may be very difficult after radiotherapy.

To be honest I had regrets that I hadn't had mastectomy 10 yrs ago, as I had to go through this all over again! With no real option of reconstruction that would be successful or not needing ongoing surgeries.It is alot harder the second time. In my 30's this disease
effected my life immensly- and now it is here for my 40s- well it isn't going to be for my 50's!

Around the time I was researching all of this I found an interesting article basically questioning if lumpectomies vs mastectomy is actually killing our young women, as they are young and the likelihood of them having recurrence again in future is higher.

I saw beautiful photo of a young women on a beach- topless who had bi lateral mastectomy. She was wearing bikini bottoms, sitting with her children playing in the waves. She looked absolutely beautiful and after a while of looking at photo I forgot she didn't have any breasts. After seeing this photo I thought I can do this! My husband is absolutely wonderful and has no problems with the fact I have a "foob" now.

It is a huge decision. After what I have been through I would highly recommend that if you are going to have reconstruction, have a mastectomy now. As reconstruction is so much more difficult after radiotherapy. Some Surgeons will deny this and say it can be done. It can, however most of the time it is very difficult- particularly implants.

You have do what is right for you! From your photo you are a beautiful young women, with a whole lot of living to do!

I wish you all the best!

Blondie

Blondie · 06-02-2011, 03:33 PM

Hi,

A very difficult decision to make. 10yrs later I had a recurrence / new primary!! I was 32 when first diagnosed, single and very fearful. I went to one of the best surgeons in our area who did a wonderful partial mastectomy-my breast looked no different. Had radiotherapy.

When I was not happy with the supposed "beneign calcifications" I elected to have a mastectomy. I researched about reconstruction after radiotherapy and went to several plastic surgeons- all had great concerns because I had previous radiotherapy and could affect successful outcome. This is because skin does not heal and over time the skin shrinks which causes huge problems with implants- contractures.

I chose quality of life, mastectomy and no more surgery and I am planning having mastectomy next year. No more cancer for me!

So, if you are having radiotherapy, think about it very carefully. Because if you ever need a full mastectomy and want reconstruction, it may be very difficult after radiotherapy.

To be honest I had regrets that I hadn't had mastectomy 10 yrs ago, as I had to go through this all over again! With no real option of reconstruction that would be successful or not needing ongoing surgeries.It is alot harder the second time. In my 30's this disease
effected my life immensly- and now it is here for my 40s- well it isn't going to be for my 50's!

Around the time I was researching all of this I found an interesting article basically questioning if lumpectomies vs mastectomy is actually killing our young women, as they are young and the likelihood of them having recurrence again in future is higher.

I saw beautiful photo of a young women on a beach- topless who had bi lateral mastectomy. She was wearing bikini bottoms, sitting with her children playing in the waves. She looked absolutely beautiful and after a while of looking at photo I forgot she didn't have any breasts. After seeing this photo I thought I can do this! My husband is absolutely wonderful and has no problems with the fact I have a "foob" now.

It is a huge decision. After what I have been through I would highly recommend that if you are going to have reconstruction, have a mastectomy now. As reconstruction is so much more difficult after radiotherapy. Some Surgeons will deny this and say it can be done. It can, however most of the time it is very difficult- particularly implants.

You have do what is right for you! From your photo you are a beautiful young women, with a whole lot of living to do!

I wish you all the best!

Blondie

chekmark · 06-03-2011, 04:23 AM

Louise, in the big picture that is what I based my decision on at the very last minute. I figured my oncologist was the one saving my life so I went for the mastectomy. Although my surgeon was great , I also had some staging problems with one saying stage 1 and one saying stage 2 and my surgeon was right all along, I ended up being a stage 1. I am sure that I will feel better once I have the reconstruction. Thank you for your wise words.

Elizabethtx · 06-03-2011, 06:10 AM

Go with your gut feelings! Reconstruction is always an option, immediate or later, as I have discovered. As I made your decision I asked the onc...she said if it was me or my family I say MX. The surgeon was happier with a lumpectomy. Isn't it funny how they see life differently. The onc sees life and death everyday from cancer, so she believes in trying everything. Her quote to me was "let's do everything we can to rid your body of cancer now, or we wil be chasing cancer for the rest of your life.". That made all the difference for me. You will make the right choice for YOU.
Elizabeth

06-03-2011, 12:07 PM

Hi, I was diagnosed 6 years ago today! I was 45 and had Grade 2 ER+ Her2+ one lymph node+ and 2.75cm tumour...before I even knew pathology I had decided I wanted bilateral mastectomy and nobody was going to change my mind :-) I also had radiotherapy on cancer side.

I don't use any prosthesis and am very happy with my appearance. I had a friend who had recurrence on her chest wall and I like the fact that I can just take my hand over entire area and feel for any lumps or bumps!

I live in Scotland and have spoken to quite a few patients who were refused a mastectomy never mind bilateral.

Good luck with whatever you decide

Debbie L. · 06-03-2011, 10:06 PM

JRA40,

As you can probably see from the varieties of responses to your question, this is one of the places in breast cancer decision-making where there is not usually a strong medical reason to go one way or the other. The crux of the matter will lie in YOUR preferences and priorities. Sometimes it helps to talk it out with a neutral party or parties, or at least write it out. Two columns, pro and con, perhaps. Each of us will weight the pros and cons differently but seeing them in black and white can help get clarity. And posting them here for comment can also help get clarity. The right answer for one of us could be the wrong answer for the next. SO much to consider.

I won't presume to advise you on YOUR right answer, nor even tell you what was the right answer for me. I will simply encourage you to give yourself as much time as you need to make your decision. When the time is right, you will know. Be open, trust yourself, be patient with yourself, and the answer will be there for you.

And let us know about your decision-making process, and if you have specific questions of course ask them (here). In hearing the (wide) range of choices we've made and degrees of satisfaction we have with those choices, you'll gain confidence that this it the time to TAKE YOUR TIME and trust yourself, as you make the right choice for you.

Debbie Laxague

CoolBreeze · 06-05-2011, 04:59 PM

It's interesting that they did chemo before surgery for you. I thought they only did that when you are stage III.

Here is the way I look at it. The recurrence and disease free survival are exactly the same whether you do mastectomy and lumpectomy. Also, cancer can and does come back in mastectomy scars; I've known quite a few women this has happened too. They cannot get all breast tissue when they do a mastectomy - they are only reducing risk, not eliminating it. And, statistics show it doesn't matter if you choose breast conserving therapy or not.

Once you take off the breast, there is no putting it back. With lumpectomy, you still have options down the road.

Taking off a breast is no simple thing. Breasts are not useless lumps of flesh, they are part of your body and amputating body parts has life long repercussions. For me, I have lost strength in my right side and I'm also completely numb from cleavage to scapula. I also have had a "phantom" itch for two years that I cannot scratch because it's numb. I am unable to do things such as push ups, or open jars, and that kind of thing. (I did implant reconstruction) I also had a frozen shoulder after my surgery, which - while not life threatening and which will go away - has been unbelievably painful and which has really delayed my recovery. It's been six months now. Sometimes it lasts for 2 years. Assuming I live long enough, I will have to have more breast surgeries. Implants have a ten year lifespan and need to be replaced. You also have to have MRIs regularly.

The ONLY reason I had a mastectomy was because I had multicentric/multifocal cancer. I wanted a lumpectomy but it went before a tumor board and they said no. It was spread throughout the breast with several spots of invasive cancer other than the large one. I fought long and hard to keep the breast but it was not to be. My left one was healthy so I left it alone and I'm glad I did - I can still feel the hugs of children, etc.

Now, that is my opinion and my feelings, and you do what is right for you. I presented my thoughts in case there was something you had not thought of that you would take into consideration. I know somebody said to go with your gut, but I disagree with that. This is a decision with consequences and you need to make it with logic, not feelings. You need to know the statistics and you need to know there are consequences to mastectomy, whether it's weakness and muscle problems due to reconstruction, or the lifelong use of a prosthesis, or questions if you don't.

Most of all, you need to make a decision that is best for you and your life and circumstances based on all the information you can gather. It should be one that you will not regret later. It is a difficult decision and you must make it thoughtfully.

What is right for me or another woman is not right for everybody. I know how hard it is and I wish you the best of luck.