radiation after masectomy

[kimmarkou]

I recently had double masectomy (June 26).  Lymph node biopsy negative.  Her-2 negative.  Estrogen positive.  The breast tissue came back with positive margins near the chest wall.  I underwent reconstruction with tissue expanders at the time of surgery.  I have a couple of questions.  First of all, the surgical oncologist said they have no way of determining how much, if any, of the cancer cells remain.  Said he couldn't go back in to get clean margins at the time of the implant replacement because he wouldn't know where to cut and would be blindly taking chunks of muscle in an attempt to get the cancer cells.  He also said if the cancer returned, it would not spread through the muscle but would metasticize into a bump.  He also said it could not spread through my body because I took away the pathway to the lymph nodes when the breast tissue was removed.  That all sounded good to me, but he still recommended chemo and radiation.  We are waiting on Onca score results.

Saw a radiologist yesterday.  He told me the cancer CAN spread if it comes back - through the bloodstream.  I asked him if I get the permanent implants and the sequence is skin, muscle, implant, chest wall... won't I detect it before it hits the chest wall.  He said 'no'.   Recommended 28 sessions of radiation.  I asked him if there is any risk of radiating through the plastic tissue expanders.  He said there had not been any studies on that and that it was probably safe.  Also said there are no risks of lukemia or secondary cancer with radiation.

I told him I thought 28 sessions was extreme since nobody can actually pinpoint where the 'leftover' cancer cells 'might' be.  He said anything less than that would be ineffective.

I am extremely confused right now.  I had the masectomy to avoid chemo and radiation and now I am back to having conversations about it.  Can somebody inform me as to what is going on?

Any thoughts would be really appreciated.

Sincerely,

Kim

[SueYoung55]

When they radiated my chest and neck area, they then rotated the beam and did my back trying to get a different angle with the external beam. So, any heat there wasn't coming from the front but the direct radiation to the back.

I've never heard of it burning the back from the front. Maybe they didn't realise they were being radiated from the back on a special angle to get the node area.

Best wishes with whatever you choose to do. Always research all options :)

[kimmarkou]

Thank you both for your input.  I'm trying to take everything in, but am terrified of radiation and/or chemo.  I was on another blog earlier and the girls were saying they were getting burn marks on their backs because the radiation was going all the way through and coming out the back!  A friend suggested homeopathic from here on out and I intend to look into that as well.  I don't want to rush into anything.  I've never been one to just follow blindly and I kind of think that's what these doctors want me to do.  I understand I didn't get clean margins, but no one can tell me what's left, if anything.  The radiologist also said there isn't any way of knowing if anything is left after the radiation or testing to see if it came back.  Radiation seems like a huge risk for something that isn't 100%.  My head is swimming.  But I appreciate your thoughts.  Geez... cancer *****.

[katarina777]

Great answer, Sue Young55, and I agree with you. I have also heard that radiation often destroys the reconstruction job, and I am puzzled that they didn't know that the margins were not clear before the plastic surgeon went ahead with his job. if they had known, they would have delayed that hob and gone back in to remove more tissue until the margins are clear, and you would not be dealing with this issue now.

I totally understand your concern, and something needs to be done. It is too risky to leave it like the way it is. kat

[SueYoung55]

Kim,

If I could, I'd tell you to go get another surgical opinion. I do not like the way your surgeon answered your questions. Or the radiologist for that matter. I had a 10 cm mass in my right breast and they removed all the way in to my chest muscle with my mastectomy. You for SURE want clear margins! Please go for a second and a third opinion if necessary!

They do not reccommend expanders when there is going to be radiation. Here is why. Radiation not only zaps the cancer cells, it zaps everything in it's way. Lungs, heart, rib cage, etc. Not trying to scare you but this is all true, depending on what side of your body the cancer is and how they do your radiation. Since they zap your ribs along with your breast tissue (always some left after surgery) they weaken some. So, say you have expanders in both sides. The non radiated side expands properly, the radiated side could expand inward since the rib is now weakend. Not to mention there is a chance for capsular contraction. I was told by two plastic surgeons that there is a 70% risk of failure with expanders on radiated skin. This does not mean the radiation won't work perfectly through your expanders. And you could be in the lucky 30% range! Some women do just fine with them and radiation. I would strongly suggest you research this before moving forward. That said, if it were me, I would have chemo and radiation. And he should never have said there isn't a risk for cancer from radiation because there is.

Keep in mind that the breast surgeon knows less than nothing about radiation and chemo and plastic surgery. They didn't go to school for all of that and the little bit they did learn about it during school is long gone. The chemo oncologist knows less than nothing about surgery and radiation. The radiologist knows less than nothing about surgery, chemo and plastic surgery. Do you see where I'm going with this? They each have their own specialty and that's what they keep up with and know inside and out. But they will only tell you what they "know" and not necessarily what's available elsewhere.


Please research for this for you, you're worth it!

[kimmarkou]

Thanks Lori,  

You are right.  I guess I just need to wrap my brain around it now.  I'm so worried about side effects.  Are there different types of radiation?  May I ask what type you had?  I've been reading and saw a couple of sites that printed 3 weeks is just as effective as 6.  

Thanks for the comment,

Kim

[loridun]

Kim,
You have many more questions than I have answers, but know that 28 sessions is not unusual at all.  I had 30-just finished in March of this year.  They don't need to know where the cells are exactly, because they will "paint" a big square over the affected side.  Know that radiation, while it is truly inconvenient and the burns/fatigue are no fun, is completely doable.  The 6 weeks will pass more quickly than you can imagine.  If you did not have clean margins, you ought to zap any of those cancer cells that are still there!  Women have metastases all the time after removing the breast tissue, so that doesn't make sense at all to me to say that you couldn't develop cancer elsewhere in your body.
Regards,
Lori