afraid to finish my reconstruction

My Reconstruction Experience
Believe me, you are not alone in having problems with your reconstruction. You came to the right place for support. Prior to my mastectomy (right side only) I met with a plastic surgeon and decided to go with a tissue expander and then replace it with an implant later on. He was present at the time of the mastectomy and placed the tissue expander and closed me up. When I was finished with all my treatment I went back to him to discuss the next step. He was ready to schedule the exchange surgery until I pointed out that we had not done a single fill except for what he put in the expander in the first place. He clearly had not bothered to read my chart. He did a fill right then and 3 weeks later I had the exchange surgery. The recovery went OK but the result on the reconstructed side was awful. I mentioned it during several follow-up visits. He told me that is just the way I was going to look and I would have to live with it. He said I should not expect miracles. At that point I decided to consult another plastic surgeon. Well, I saw THREE other plastic surgeons and my general surgeon. The general surgeon rated the job done as a 4 out of 10. I chose a new plastic/reconstructive surgeon and had my revision-reconstruction surgery about 6 weeks ago. What a difference. Clearly improvement was possible. My original plastic surgeon did not have the desire or obviously the skill to do what was necessary. I am angry that I had to undergo 4 1/2 hours of surgery under general anesthesia to fix what should not have happened in the first place. I should mention that on the non-cancer side I had a breast lift/reduction at the same time as the initial reconstruction and that looks pretty good.

I am not familiar with how Medicaid works but there must be someone who can provide you with information on what is covered under that system. You are in a tough position but you have the right to look and feel as close to normal as possible. That is precisely the reason I went through another major surgery - much to my husband's dismay. He would have been fine had I done no reconstruction whatsoever. Despite being a colon cancer survivor himself, he just does not understand what losing a breast has done to me psychologically.

I understand when you say you are not sure if you have the fight in you to go elsewhere. This is a lot to deal with. All I can tell you is that, for me, going elsewhere was a absolutely worth it and a good decision.

Please let us know what you decide to do. Good luck.

IRENE

minusonebobby said:

thank you so much for
thank you so much for sharing your story with me. like I said, I don't know if I have the fight left in me, I am still putting my life together in so many ways. I am incomplete everywhere. There is so much that I need to do. I definately want to complete the surgery, but there is more pressing issues right now. I hope when I am ready, I will be able to find a more competent surgeon. I was wondering if maybe a female plastic surgeon would be more sympathetic to my plight. Any thoughts on this? I would also appreciate more input on other reconstructive whoas, and if anyone has gone through what I have, and gotten it "fixed" . Like I said, I have completely stopped everything. I was supposed to go through several more steps. I just can't see me going back to the other surgeon. But I would love to hear other success stories. And, what about the horrific scarring, is there anything to be done with that? I was told that it is just how I healed, and it would take time. It has been over a year. When I had the mastectomy done, it seemed to heal much better and after a year, it looked much better than what my scars look like now, way over a year later. I feel like a Tim Burton character. oddly out of proportion, with jagged ugly etchings everywhere.

So sorry for what you are
So sorry for what you are going through i can't share any reconstruction with you as i had bil.mastectomy with no reconstruction as i was 67 that was in July 2010 at the time and didn't want to go through that and i have never regretted it.Just wanted to give my support.Strength,Courage and Hope.Hugs Frankie

Frankie Shannon said:

So sorry for what you are
So sorry for what you are going through i can't share any reconstruction with you as i had bil.mastectomy with no reconstruction as i was 67 that was in July 2010 at the time and didn't want to go through that and i have never regretted it.Just wanted to give my support.Strength,Courage and Hope.Hugs Frankie

I am so sorry for what
I am so sorry for what you're going through now. Sending you hugs and support!

This may be no help at all...
...but just in case, let me say a few words.
I lost one breast in 1986 at age 38 and the other in 1988 at age 40.
I chose to have no recon. Believe me, I thought long and hard about it.
I am now 63 (it has been over 25 years) and still 'breastless'.
What I want to say to you is that what you are thinking and feeling now is your reality.
However, over time your perspective will change.
Whatever you decice to do or not do now won't be such a 'big deal' to you later in life.
I lost my marriage somewhere in the shuffle but am now with a man who loves me dearly in spite of my imperfections (physical and otherwise).
My point is that things change and change and change. And regret is just not what we are going through this battle to aspire to. In time, slowly, you will accept whatever decisions you make now as being the best you could do with who and where you were at the time. You will learn to love yourself, however you are.
That is one of the greatest, and perhaps most difficult, hurdles we cancer survivors have to make. But we do it because we do what we have to do in order to do what we want to do.
God bless.

jne66 said:

I'm on a medical card too.
I'm on a medical card too. My state very big on rights for breast cancer. You do have the right to a second opinion. Do you have someone who can go with to help as an advocate? Maybe contact local cancer support group. You have rights no matter what your insurance status. I know it stinks. It leaves us bald, bloated and boobless. It gets better.

Hope you find a better PS
I must admit that I love my PS and his attitude. He lost his mother to breast cancer and is very up front about it and what he wants to do. In his words, "I can't change what has happened to you BUT I can make what happens now the best I can and I'm committed to my breast cancer patients." He has spent a lot of time with me and explained my options. He was suggested by my general surgeon and the normal wait time to see him is 2 to 3 months. I like busy docs! There's a reason they're busy. My surgery was just on the 10th but I'm happy with the outcome so far. I hope you can resolve your issues and be just as happy, whatever you decide. Gentle {{{HUGS}}} and prayers for calm and resolutions.

You know, sometimes I also
You know, sometimes I also get so tired of being strong all the time. So its ok to feel low and really talk about your fears. I signed in to this society today because I have just been daignosed ...with another malignant tumour. Had an MRM and operation on the left side 2 years ago. Going in for the removal of the second breast in anohter 10 days. While I cannot help you with your problem, I just wanted to let you know that I understand your pain and feelings. I havent had any reconstructive surgery, and use a prosthetic. I do have the support of my family, so that helps. My daughter is a pillar of strength, and comes up with the most simple common sense pieces of advice, that tend to help me focus on the positive. I guess thats what the person who told you to be thankful to be alive meant. My fav saying.."I had no shoes and I complained and then I met a man with no feet."
As for changing the hospital, well, that too is something I am doing this time...as I had sort of started losing confidenc e in the hospital I went to for the last one...not in the treatment, but in the follow up care. I underwent the PET scan on my own, and found the present tumour. They had kept on postponing it saying they would check out with a mammogram in the next check up. I also met a woman, who had religiously kept up her appointments and check ups for 4 years, and yesterday, a PET scan revealed that the cancer had spread beyond help...the whole body! So a change in hospital , in my case has brought me a lot of relief mentally. I dont know if I'm helping you...Sometimes asking somebody may be a good idea. Perhaps your insurance will support you.

minusonebobby said:

thank you so much for
thank you so much for sharing your story with me. like I said, I don't know if I have the fight left in me, I am still putting my life together in so many ways. I am incomplete everywhere. There is so much that I need to do. I definately want to complete the surgery, but there is more pressing issues right now. I hope when I am ready, I will be able to find a more competent surgeon. I was wondering if maybe a female plastic surgeon would be more sympathetic to my plight. Any thoughts on this? I would also appreciate more input on other reconstructive whoas, and if anyone has gone through what I have, and gotten it "fixed" . Like I said, I have completely stopped everything. I was supposed to go through several more steps. I just can't see me going back to the other surgeon. But I would love to hear other success stories. And, what about the horrific scarring, is there anything to be done with that? I was told that it is just how I healed, and it would take time. It has been over a year. When I had the mastectomy done, it seemed to heal much better and after a year, it looked much better than what my scars look like now, way over a year later. I feel like a Tim Burton character. oddly out of proportion, with jagged ugly etchings everywhere.

new surgeon
Irene is right. There is a huge difference in surgeons. I would hope you would be able to get a second opinion. Since you are still going to that clinic for the onc part, if you just say you want a second opinion, it shouldn't ruffle any feathers. If possible, find personal referrals. The social worker in our oncology department suggested I go to the BC support group and ask about the surgeons.
A really good surgeon should be able to help with the scars too.

Cindy