Facing mastectomy

techgirl

Hello! I'm new to the site. I'm 32 with invasive ductal carcinoma of my left breast. I had neoadjuvant chemo and will have my last Taxol on Thursday (yay!!)

I'm going to have surgery next month, and am very nervous about it. I would love to hear your experiences about how to cope with a mastectomy. Also, I am constantly going back and forth between having a unilateral versus a bilateral mastectomy. I have to make my decision soon. I would love to know what your thoughts are.

ohilly

I am 52 and also had invasive intraductal cancer of the left breast. Although my tumor was very small (1.1.cm) and did not spread to the lymph nodes, I chose to have a mastectomy and do not regret it. Actually, the only thing I do regret is not having a mastectomy of the healthy breast, but the reason I didn't do this is I was thinking why would my insurance cover the removal of a healthy breast and maybe it is a bit extreme. My doctors put a lot of pressure on me to have a lumpectomy, but despite all the talk that the survival rates are the same, I just did not believe this. I have doctors in my family who felt the same way: often research shows one thing and then later on it turns out to have been wrong. In the past everyone got mastectomies and in my opinion, now the pendulum has swung too much the opposite way: after I had the mastectomy, my breast surgeon came into my hospital room (she had strongly advocated lumpectomy) and told me she hopes I don't regret my decision.

Now I feel that no matter what happens, I'll have done everything I can to help myself by having the mastectomy. I don't really find it that bad: I had immediate lat flap reconstruction and my breast looks normal. I can even wear low-cut dresses! The way I look at it, if you can have a new breast that is almost the same, why fear mastectomy?

Anyway, I'm sure there are those who would disagree with me, but that's my perspective. Feel free to email me if you have more specific questions. Ohilly

babs49242

Hi Techgirl! I had an unilateral mastectomy. I have had no qualms about the decision I made. I did not have reconstruction a personal choice. I did wish my insurance co would have paid for a dbl mastectomy. but they wouldn't sooooooooo I am a lopsided unicorn! I use to wear my prothesis all the time ..Now I say Phuey and go with out alot of the time. I didn't have any problems healing.
Only you can make the right decision and how you will feel aobut the outcome. One can always have reconstruction any time after surgery,from my understanding..

Unknown

Hi techgirl, I had a small tumor and at first was so terrified of cancer that I told my surgeon that I wanted both breasts gone or at the very least the "bad" one. He strongly recommended that if the margins and nodes were clear, I should have a lumpectomy. They were and I did. I am glad that I opted to keep my breast. For me it would have extremely traumatic to lose something that had been a part of me my whole life if it was not absolutely necessary. I am extremely grateful to my surgeon for caring enough to counsel me. He made the excellent point that removing perfectly healthy tissue does NOT decrease your risk of recurrence at all. There are decades-long clinical trials that have shown that a lumpectomy with radiation is just as good as mastectomy in the long run----that is a FACT. Just like sentinal node biopsy is just as good as dissection when the sentinal node is clear. Once again, decades of research proves this. Just because something was done for years and years(mastectomies) does NOT mean it is always better. Years ago surgeons did mastectomies on everyone because there just was not anything better YET. Medicine is always evolving and progressing-thank God. Think very carefully techgirl, more is not always better. Do I worry about recurrence? Sure I do, but I would no matter what surgery I had. Thats the nature of being a cancer surviver. If I developed a second cancer in my other breast and qualified for a lumpectomy, I would do it again. In a heartbeat!

LindaR48

I am 60 yrs old. Somebody said only you can decide because only you know your comfort zone. I tried twice for the Lumpectomy but couldn't get a clean margin so the mastectomy (right) was all I had left to do.. The bilateral was not even consideered because I don't believe removing healthy tissue will improve my chances of not having a reccurrence. For personal reasons I chose not to have reconstruction. I feel that you need to adjust to the loss before replacing it. It has worked for me. The surgery has not caused any problems with my husband and I am comfortable using my prosthesis for dress-up affairs. I really feel comfortable without it at other times. As for the surgery I had no serious problems. Emotionally the adjustment takes a little time. Again each person deals with this in their own way. I'm happy with my choices.I'm sure you will make the right one for you.

3cbrca

Hi Techgirl

I had neoadjuvant therapy with the hope that the tumor would shrink enough for the lumpectomy. There were some concerns about my response to chemo and decided to do a bilateral mastectomy. I chose to do the unaffected side not only was I extremely hi risk, but frankly I did it for vanity - I didn't want one breast to grow and change and the other to always be the same. Also at the time my friend from work was deciding whether to have a 2nd mastectomy. She had an early stage cancer in her early 40s and a single mastectomy. She developed a Stage 0 cancer in the other breast and could have had a lumpectomy, but she decided to have the 2nd mastectomy sor the same reasons. I haven't had my reconstruction for various reasons (surgery was one year ago), but I am still glad I did it. Actually, I don't think I've ever doubted my decision at all.
Hope that helps and glad to see you finishing your chemo!! Surgery is not as bad as I thought.
S

survivor51

Hey Sweetie,
I did have a bilateral mastectomy because I knew I had cancer in the left side and some haziness in the right which turned out to be cancer so it was a good decision. I know many people that chose a lump and doing great. I did have reconstruction and very please with my new "girls". I made my decision after looking at family history with hormonal cancer and know myself with wondering/worrying. I do not regret my decision but I agree that each of us has to decide what is best for "ourselves". I can't say there is a right or wrong answer when you look at all the facts that deal with "yourself". The mastectomy is very emotional but to be honest, it was not nearly as bad as I had invisioned. I have a wonderful support system and I am not in my thirties. I'm sorry you have to make such a decision so early. I do know that if you are considering reconstruction, it is easier to match both up with a bilateral. Is there a cancer group in your hometown? My prayers are with you and I promise that it does get better. We will be here for you on your rollercoaster ride with both the ups and downs. Angela

techgirl

Thank you all for your candid responses and advice. I will consider them all. I will have to have radiation therapy before reconstruction so I do have some time to think about it. I believe that since I'm so "on the fence" about the bilateral, that I give myself more time to ponder it and get used to the loss of my left breast before making that decision. At the time of my reconstruction I can have the right removed if I choose to. Insurance should cover all surgeries. Thank you for your support! You're a great group of ladies.

Jadie

techgirl said:

Thank you all for your candid responses and advice. I will consider them all. I will have to have radiation therapy before reconstruction so I do have some time to think about it. I believe that since I'm so "on the fence" about the bilateral, that I give myself more time to ponder it and get used to the loss of my left breast before making that decision. At the time of my reconstruction I can have the right removed if I choose to. Insurance should cover all surgeries. Thank you for your support! You're a great group of ladies.

Having radiation before your reconstruction might limit your options on ways to have the reconstruction done. I know one woman who tried to do implants after rads and the skin wouldnt stretch for the expanders. Radiation hardens the skin. I had reconstruction one year (they make you wait that long) after rads and it healed good. Just something you might want to ask your radiologist and plastic surgeon about.

techgirl

Thanks, Jadie. I know that I will not be able to have implants, but have been recommended to consider the tram flap procedure. What kind of reconstruction did you have following radiation? Can you tell me about radiation? Is it bad? Doable?

hward2007

techgirl said:

Thanks, Jadie. I know that I will not be able to have implants, but have been recommended to consider the tram flap procedure. What kind of reconstruction did you have following radiation? Can you tell me about radiation? Is it bad? Doable?

Hi, I am having a bilateral mastectomy with reconstruction next Tuesday. I am 33, married, and have a 14mth daughter. She is the main reason I have chosen the bilateral. Breast cancer runs in our family and I don't want to spend the next how ever many years guessing or having to do this again when she is 15 or older. I don't know if this helps but I hope it does.
Heather

Jadie

techgirl said:

Thanks, Jadie. I know that I will not be able to have implants, but have been recommended to consider the tram flap procedure. What kind of reconstruction did you have following radiation? Can you tell me about radiation? Is it bad? Doable?

I had a size difference in my breast and a large indention in my left breast, so I chose to have reconstruction and reduction to the right breast.

A friend of mine had the tram flap procedure. That was 10 years ago and she is doing great.

Radiation was very doable for me. I did rads early in the morning and then went to work. I felt really good while doing rads. I was tired by the end of treatment but I think it was everything (chemo and rads) combined. For me chemo was by far the worst.

Be sure to take care of your skin while doing radiation. Ask for some cream to put on after each treatment. Aquaphor is really good. Use it diligently.

seeknpeace

techgirl said:

Thanks, Jadie. I know that I will not be able to have implants, but have been recommended to consider the tram flap procedure. What kind of reconstruction did you have following radiation? Can you tell me about radiation? Is it bad? Doable?

Hi,

I have had a bilateral mastec. with immed. tram flap. I was not keen on implants. And, I felt that I would have a hard time adjusting if I had nothing there.'

The tram reconstruct is a tough surgery. I would direct you with every cell of my being to try your best to find a plastics guy who does the DIEP. With the tram you get a tummy tuck but they cut your abdomenal muscles and move them with the fat and tissue to place the tissue to build your new mounds. The muscles are moved to provide a blood supply. Then they do the tummy tuck and put mesh in your tummy.

Your ribs are sore for a long time, because they push the tissue and muscle up through your torso, under the skin. So, you insides are all bruised and beaten up. it is a tough surgery, but I regret losing my muscle more that I can say.

With the DIEP, they move the fat and tissue free, they cut it out and do a tummy tuck. They then place it and do micro surgery to create a blood supply. The recovery time is fabulous, you keep your abs, you get a nice flat tummy, etc.

I am looking at either a recurrence or a new kind of cancer in my mastectomy scar, I have surgery the 11th. So, I have lost my abs and now I may lost the reconstructs and that double sucks.

lmcc725

I just finished w/ bi lateral mast w/ tissue expanders and my silicone implants were put in two weeks ago. Everything went very well. Doctor said today she was extremely pleased w/ my healing and made my next appt in 10 weeks to make the nipples.(outpatient) and back to work the next day. I am happy w/ my decision. Funny story a plastic surgeon I didnt use actually use but know told me to do both breasts. He said I will always be overly worried about the remaining breast, and for vanity reasons they will look much better than trying to match two very different substances silicon/saline to fat tissue. Recomendations..buy at least one body pillow to keep you from rolling over in bed after surgery and snap front sports bras were a life saver. If you have any more questions I would be very happy to answer them for you anytime. Good Luck w/ everything stay strong!