Her2+/radiation

[ELF]

I was DX with stage IIIb Inflammatory BC in Sept. of 05. Had 4 rounds of A-C, dose dense. 4 rounds of Taxol+Herceptin, Hercetin to contine every 3 weeks for a year. All physical evidence of cancer was gone, MRI+ Bone Scan were clear. My oncologist, my surgeon and my radiation oncologist all wanted me to do a bilateral mastectomy. I resisted, went to the Moores Cancer Center in San Diego and got a second opinion. They concurred and I had the BLM about 3 weeks ago. 11 lymph nodes were taken all were negative.

The surgery was horrific, I neded to go back for wound repair surgery 2 weeks later and I have been on anti-depressants since then. The surgery was the worst thing that has happened to me since Sept. In hindsight I would chose not to do it, given my reation to chemo.

My doctors are pushing for radiation, I am in inclined to not do this. I can find no statistics that show this is really beneficial, and I fear the worst, burns, fatigue, and complications for reconstructive surgery (DIEP Flap) next spring after my Herceptin regime is scheduled to end.

Has any one any thoughts on not doing radiation?

Elaine

[Lolly]

Hi Elaine,
I'm sorry you've had such a hard time of it, and I do understand your reluctance to have radiation. But, IBC is considered such an aggressive cancer I'm sure your docs are only trying to give you what they feel is your best shot at avoiding recurrence.
Can you get a second (or third) opinion on the radiation? Maybe that will help in your decision.
I was Stage IIIB at primary diagnosis, but mine wasn't inflammatory bc. I DID have radiation but still had local involvement to the mastectomy site when I recurred, so in my case it wasn't foolproof although maybe it helped prevent more extensive involvement.
I think now if I'd not have had radiation, I would have always been second guessing myself, but I know I did everything possible to tip the odds in my favor.
<3 Lolly

[lexigirl]

Hi Elaine,

I would have to agree with Lolly. I was diagnosed Aug 05 w/ IBC. I had 8 rounds of chemo, 11 herceptin txs, and rads. If I didn't do everything my onc suggested I feel like perhaps I didn't do everything I could to fight this disease.

It's such a personal decision. After being diagnosed with such an aggresive cancer I figured being radiated wasn't going to kill me any sooner.

Hugs,
Lexi

[Elf]

Did the rads burn you? What were the side effects of radiation? How do they affect your plans for reconstruction? if any.

Elaine

[lexigirl]

Elaine,

I did get some peeling and a small blister about 1 week after my rads were finished. At my last appt my Dr prescribed a cream to use just in case this happend. It helped bunches and my skin is just about all healed up. I finished rads about 2 to 3 weeks ago.

After having rads the recon is a bit limited. I am still not sure if I will have recon or not. When I was first diagnosed they wanted me to wait a couple of years. Probably to make sure I'd still be around. Ha! When I finished my chemo, my onc asked if I was interested in recon. I said if all is okay I might.

All in all tx is not that bad. Much easier than chemo and like I said before, I had to do everything that the docs thought may help beat this disease.

Lexi

[Sandy H]

I was diagnosed with stage 111b IBC in Mar. 2001. I had bil mastectomy(my decision on bil). I had 5 treatments of radiation and then the skin mets took off which were already there before I started radiation. I never had any more radiation. Have treated the skin mets with chemo. I was relieved that I did not have to have any more radiation because I was parnoid of it. Everyone is different and you have to do all you can to prevent a reoccurence. I thought at the time because I was not able to have the radiation that I was doomed. Well, its been 5 years and I am still here. I was told that it most likely would reocur at the primary site and without radiation then it would reocur for sure but so far so good. Keep us posted on what you do. Go for second opinion or even third. hugs, Sandy