Radiation Treatment and Radical Mastectomy

ibcfighter14

Hi everyone. I just wanted to say that I admire you all and send you my love. It is so hard living with IBC - it is hard for my two daughters and my hubby especially. But we keep fighting, everyday.

I am now undergoing radiation treatment with hyperthermia. I did Herceptin, Carbo, and Taxatere for six cycles (DX was IBC ER-/PR-, HER2 +, grade 3B) and decided to skip mastectomy. I heard that some IBC patients had success with skipping mastectomy and going straight to radiation. I am in my second week and feeling alright so far, but I am worried if I should not go to mastectomy anyways. I heard I can split radiation and go to mastectomy mid-way, then finish the remaining weeks of radiation. Any thoughts?

The main thing with mastactomy is that it takes a big hit on your immune system. And, even with mastectomy, none of my surg. oncs can tell me what margin to take out with the breast, so that there are no tumor cells left to grow back into a recurrent tumor. I'm really scared, especially since after I finish radiation, that's it. Even if I do a mastectomy in the future, I cannot do radiation to kill any remaining cells (After radiation, I would have absorbed a dose of 56 Greys). I have a surgeon who said I could do the split radiation thing.

Strangely, my rad. onc. said he does not want mastectomy yet, because IBC is a diffuse tumor and should be killed with radiation before the breast is removed. Operating now could risk spreading cancer cells to the bloodstream and then to the rest of my body. I have no mets so far, thank God. He also told me if I have a good response, I won't need surgery. Anyone else know of someone in a similar situation who had success without mastectomy?

Thanks everyone and God bless. Stay strong.

ibcmets

Each person can have a different treatment plan.  I was stage IV from the start and did chemo, BMX a year later & hormonals due to ER+.  I did not do radiation.  Chemo took care of all bad cells in the breast, I just have bone mets which have been stable on Zometa.

Terri

ibcmets

Each person can have a different treatment plan.  I was stage IV from the start and did chemo, BMX a year later & hormonals due to ER+.  I did not do radiation.  Chemo took care of all bad cells in the breast, I just have bone mets which have been stable on Zometa.

Terri

Kicks

ibcfighter14 -  Your TX plan is VERY different than mine (or any others I have heard of).   What you say your Drs are telling you is 180 out from what my Drs told me.

My TX plan was a bit different than most have had here.  I first did 4 DD A/C to try to get the IBC to form a lump (and shrink) so that Surgeon had a chance of getting it out.  It did what it was supposed to do.  2 weeks after last A/C, I had a mod. rad. mast. with good margins.  3 weeks after surgery I started 12 weekly Taxol follow a week later with 25 rads.  Also started Femara a week after starting radsd as I'm ER+/PR-; HER2-.

From all I've been told and read - it isn't the mast. that hits your immune system but the Chemo and rads that hit the immune system.

My Rads Dr never said that rads were a guarantee that there were no longer any cancer cells anywhere in the body.  It was just the last of the fight to try to kill any cells left after the IBC has been cut out and the 2nd Chemo attacked (and HOPEFULLY killed) all cancer cells that were 'floating' around the body.   Chemo works throughout the entire body, Rads work on a limited area.

I was DX'd in 8/2009 and am still 'riding NED (No Evidence of Disease)' - so I have no 'complaints' about my TX's.

Sherlocked

I'll flat out say if you're asking for advice, do the mastectomy.  It could be totally unnecessary, but at this point no one can tell you it will be ok not to have one, because we're really the first generation where many of us are surviving it.  It is a very poorly understood disease.  But the usual protocol is chemo, mastectomy, more chemo if warranted, radiation, and targeted therapies if appropriate...for myself, I wouldn't take a chance in not completing all those stages.

It sucks to get a mastectomy, but a few years out now I have had reconstruction and I am honestly happier now with my physical looks than I was before diagnosis.  And, I was really happy to have my breasts off because they were trying to kill me.  I'll do everything necessary to give me that best chance of surviving this, you know?  I'd recommend the same to anyone.

ibcfighter14

Thank you all for your advice. I'm thinking of doing the mastectomy, but I don't know if any dr. will do it after my radiation treatment. And, I know you can't have radiation twice. Anyone know if they know of people who had mastectomies after radiation treatment? I don't mind more chemo to kill the rest of the disease. 

ibcmets

ibcfighter,

It may depend on if you wanted reconstruction.  I know reconstruction is difficult after radiation because the skin is extremely tight.  You can check with ibcsupport.org as all on that board has ibc and many go to ibc specialists.  I don't think the mastectomy is the problem, but the plastic surgery may be.

Remember that ibc is very aggressive and I heard that chemo & mastectomy are mandatory for this.  Since you have no mets, they would most likely do radiation as well.  This would have to be coordinated by your surgeon, plastic surgeon if doing reconstruction & oncologist.

Terri

Sherlocked

The problem with both a mastectomy and reconstruction after radiation is that the skin heals slowly and is much less elastic.  At first the skin tends to be pretty hard as well, but that is maybe later in the course than midway so you'd have the mx first.  I would truly not see that as a problem for the mastectomy as in my case anyway they left plenty of extra skin for recon.  At least in my case they were not really stretching.

What they generally do is some sort of flap operation to reconstruct, often the DIEP.  If you're not familiar with that, they take fat from your belly, your inner thighs, your butt, your hips, your back - wherever you've got it, and make breasts out of it.  So for example if you have a bit of a tummy from your steroids, they can relocate it to your breasts and it feels totally natural and most look gorgeous.  If you're very thin or very athletic, there are also options which involve taking some muscle from your abdomen. 

So, although I've never heard of splitting up the rads, radiated skin can definitely have surgeries where the skin doesn't need to stretch as much.  I understand this loosens up in time as well.