Desperate

[geraldine]

Help..! Is there anyone out there who feels the same as me.
I discovered a grade 3 agressive tumour in august 2001.
I had a mastectomy in 2001, I had a secondary (same side) 2003.
Since then, I have had chemo and Herceptin and to date, Herceptin only...!

I have asked repeatedly for a reconstruction, but my surgeon is so against it.
Every time I ask Why ... He tells me he is uneasy with the idea of it.....

My problem is...If I cant have the reconstruction, then I want my surgeon to take the other breast off, then I wont have to look at a reminder, every day in life, for the rest of my life
Please somebody tell me I am not going off my head cos right now, that is how I feel. Every time I step out of the shower, I cringe at my reflection in the mirror.
Is there anyone out there who, feels the same, cos right now I need to talk to someone in the same boat....

Geraldine

[Sherryg683]

Hi Geraldine, I can relate although mine are just small scars, they still are a constant reminder to me. Actually my port bothers me more than the scars. I will probably never be able to get it out. I have absolutely no idea why your surgeon would be against reconstruction, has he ever given you a valid reason as to why he''s "uncomfortable" with it. I thought that most women who had masectomies, had reconstruction work done. Is this the only surgeon in your area? I think I would look for another if this one can't understand the way you feel...which by the way is pefectly logical. ..sherryg683

[vickie h]

Hi Geraldine,
I, too, had my left breast removed and then more chemo and radiation. The radiation all but destroyed the skin on my left chest area, it is as thin as paper and I was told that I would never be a candidate for reconstruction. I am 58 and my husband never wanted the reconstruction either, so I have learned to live with it it, though I am lopsided. I don't wear my prothesis half the time because it is too heavy. My port bothers me more, also, as I will never be without one. I have IBC, her 2 +++, was dianosed 2 1/2 years AGO. I have been on Herceptin and on and off chemo ever since, plus 2 rounds of radiation (hence, the ruination of my skin). I would talk to another surgeon, or 3 or 4 until you get the answers you are seeking. "Uncomfortable" is not an answer, just a :"feeling". You need the facts. Good luck, and I will be praying for you. Love and Hugs, Vickie H

[chrisy]

Hi Geraldine,
I think many of us can relate to the constant "reminder" - as if we needed to be reminded! There will always be reminders, whether it is scars, ports, "lopsidedness" or just the knowledge that this is a nasty beast and could come back.

But it is most definitely reasonable to want to do what you can to at least feel/look normal again! I experienced the same feelings you describe before I had my reconstruction.

Maybe I misunderstood; you said you had a mastectomy in 2001, then a secondary on same side? Was this a recurrence or a new breast cancer? "Shouldn't" be possible with a mastectomy. (although I am a poster child for "shouldn't have" gone awry!) But if this is what you experienced, perhaps your surgeon is concerned that reconstruction would make it more difficult to detect future recurrence. He definitely owes you an answer as to why he is "uncomfortable".

Prophylactic removal of the other breast (even as a "cosmetic" measure) is also an option if reconstruction is not feasible. This would not be an easy decision, but it really should be YOUR decision.

You will still always have "reminders" no matter what you do...but you are entitled to make some choices.

All that said...don't lose sight of this: the main thing is to rid your body of the disease - and it seems that you are on a good path in that regard!

Take care
Chris

[tousled1]

Geraldine,

I had a bilateral mastectomy and have no regrets. I had the option of only having the right breast removed but opted for both since I didn't want to be lopsided -- Iwas a D cup and gravity was taking a toll. I can't believe that your surgeon won't do reconstruction. I wanted reconstruction done when I had my mastectomy but since I had tohave radiation I couldn't. Now I'm not sure if I will or not as I've become quite acoustomed to not wearing a bra. Everytime I get out of the shower or get dressed I have the constant reminder that I have breast cancer. If you want reconstruction I would seriously thing about getting a second opintion. Best of luck to you.

[Kimberly Lewis]

Funny how surgeons don't want to do surgery! I had to fight for my prophylactic mastectectomy... and fight mine to NOT have a reconstruction... They pushed that like used car salesmen at Duke University Hopital here! I was shocked. Do seek another opinion and do what feels right for you and your body. By all means try and find some girls who have had reconstructions there and get their input. blesssings to you...kim

[sarah]

I wanted both taken off so as to be more symetrical but got talked into reconstruction by the doctors - my husband didn't care, felt it was up to me just wanted me to live and the reconstruction was painful - used muscle from the stomach..
Chris,
I had a mastectomy and my cancer came back in that same breast - lower center outside edge. My margins had been clean of course because the whole area was removed.
We must each decide what we want, not always easy to decide but...
good luck
sarah

[EllaD]

Geraldine,

I agree it should be your decision to have reconstruction and I would see another doctor if you aren't satisfied with the answers you are getting. I have a mastectomy one year ago - right side. I also have a port. Someone said to me recently that he had gone through some chemo after cancer (I am not sure what kind but no surgery was performed) and he found it best to put it out of his mind and forget it. Of course my first thought in my case, and all of us here on this site, was "I can't forget!" We have the reminder every day when we look in the mirror, shower, whatever.

I agree too that the port can be a pain but when I go for herceptin treatment now, I'm glad I have it. The doctor says I'll just keep it. Does anyone else wonder if they suspect we'll need it again??

EllaD

[geraldine]

Hi folks,
Sorry for taking so long to reply but since I last posted, my surgeon has decided that reconstruction is now a possibility. Yipee..

It seems he was uneasy about doing the surgery because the secondary was on the chest wall, deep into the muscle. If it wasn't for Herceptin, I would have had to lose the pectoral muscle (Hooray again for Herceptin), which would have meant, plastic surgery and would also have meant I would not have full use of my left arm...

When I saw Mr Murphy, he sugested, after speaking to my onc, that I come back in jan, with a view to stopping Herceptin and go through tests to make sure the cancer has gone completely..if after 6 months off Herceptin and I am still NED, then he will perform my reconstruction... ( Yipee again)

I know everyone feels and reacts differently but I need this op and then maybe I can get on with my life, Its like an obsticle I can't get over.

Thanx all for replying and keep well

God Bless
Geraldine