Had recurrence and Dr wants to do radiation AGAIN!?!?

Run4Us

Hi Ladies.... I need help....Let me give you a little history.  Seven years ago I was diagnosed with DCIS in my left breast.  I had a lumpectomy and 7 weeks of radiation followed by 5 years Tamoxifen.  Fast forward 7 years and I have had a recurrence.  In May I had a double mestectomy.  At the time it was thought i only had 1 tumor in my left breast but when the pathology was done they found 4 tumors.  I had 2 out of 11 nodes with cancer.  I just completed 8 rounds of chemo yesterday.  I was feeling very relieved that I was able to put this part behind me (chemo).  Today I had an appointment with a radiation Oncologist.  My medical oncologist said that we needed to check that box off....at least go see them.  He said we should be HIGHLY suspicious if they recommend radiation again because I have already had it.  His words were...It would be pretty sad if we get rid of the cancer but i have to walk around with an oxygen tank because I have lung issues with having rads again.  Todays Rad Dr said that she recommends 5 weeks of rads of full breast ond neck where the lymphnodes  are.  I was floored  I couldn't even comprehend what she was saying.  My husband asked what long term side effects could occur and she made it sound like not many.  I am SO confused.  I called my medical oncolgist to make an appointment to discuss this with him.  Have any of you had radiation twice on the same breast?  If so what type of side effects did you have?  My gut is telling me not to do this again...it obviously did not work the first time and the Onc said this would be at a lower dose then I had before.  If the high dose didn't work what makes them believe the lower dose will?  Needless to say ladies I am VERY confused.  If you could shed some light on this issue I would really appreciate it.

lane4

Hi, Run4Us - I can't help you with this issue, but I certainly understand your confusion. I've read in many places that you cannot radiate the same area twice. I wonder if a second opinion from another radiation oncologist would help. Maybe they can radiate the chest wall and lymph nodes with a smaller amount, as long as they don't exceed a certain accumulative dose. Please let us know what your medical oncologist has to say. Best wishes.

2tails

Run4us, I am sorry you are going through this. I also can't help with the issue, but I am confused as well. Everything I have read has said that you can only receive radiation once to any area. I would definitely ask a lot of questions and get a second, third and fourth opinion if need be. Please keep us posted!! We are thinking of you.

encyclias

Second opinion time.  I have also read repeatedly you can't have rads twice.  Additionally, she sounds like she is talking about a first time rad patient with the standard 5-wk protocol rather than some special treatment for a second time patient.  I definitely would hold back and see another RO for an opinion.  Your MO should be able to come up with a name.

Good luck,

Carol

dogsandjogs

Doing radiation again makes absolutely no sense.  I would not do it---

proudtospin

I to was told youncould only do rads once to the same breast

actually a couple of years ago they found changes in my boob and recommended biopsy, it all turned out fine but the surgeon told me that if it had come back after all we did (lumpie, rads and now an AL) then the only opeion was a mastectomy

course she was the surgeon but....I would be moving in that direction and I am not a person who runs to surgery

second opinion time to me

Run4Us

Thank you so much for your replies.  Yesterday, I was understandably upset and very distraught with the news that radiation was even on the table.  I was not even 24 hours out from finishing chemo and I was upset that I couldn't enjoy that small victory before this stupid cancer was thrown in my face again.  

I will NOT follow blindly with the Dr's recommendation.  I need to get several more opinions and do some research on my own.  My fear is if I do rads again I will be doing long term damage to my body.  I have to believe that exposing the same area AGAIN can't be a good thing.  Do I want to do everything I can to minimize a recurrence? YES!!!  However, this is my second time with BC and up to this point I feel I have been as aggressive as possible with my treatment.  I'm not sure that having rads again will minimize the chance of recurrence for me....My goal is to be around for a long time for my boys....how sad would it be if I do rads and my quality of life diminishes because of it.

I will keep you posted on what I find out.  I have an appointment with my medical Onc Friday and am hoping to get into another Rad Onc this week for another opinion.

Please keep your opinions coming!!!

redsox

Your med onc does not understand radiation. The current recommendation is not for the same area you had treated before. That was whole breast for DCIS. After a double Mx the treated area is gone. The areas the rad onc is talking about treating are different -- nodes and chest wall -- and require a different dose. With two positive nodes and four tumors you probably do need radiation. By all means get another opinion, but get it from a doc who understands the indications and delivery of radiation.

Phyldon6

Hi,

This is my first post here, so please forgive me if I don't know proper format. I had DCIS stage 0 , 16 yrs ago & was treated with radiation following lumpectomy. In April, I had a total mastectomy followed by chemo (A,C,T). It was a new primary Stage 3A, E+ P+ Her2 - . I just finished chemo 3 days ago. I will be taking an aromatase inhibitor.

My med onc suggested a consult with Rad Onc. Who suggested a full course of radiation to the entire area! He said he consulted with Sloan & Anderson R.Os. I feel like you do; I'm scared of heart damage & more cancer as well as potential side effects. I am supposed to see him again in 2 days, but I'm thinking of canceling .

Dear Run4Us, have you learned anymore? If so, please share. Thank you.

jessica749

Phyldon6: Why don't you yourself consult with ROs at Sloan, and/or if you are in NJ far from NYC, find an expert RO at Fox Chase or Johns Hopkins (not far-can make the trip in a day). Not sure what your doc means re "consulted " with Sloan and Anderson! Sounds weird. What: he gets a patient, then calls those places to speak to someone he knows about what to do? Of course not.

Get your information yourself from a second opinion that you can value if you are not comfortable with what this RO is saying. You certainly deserve the courtesy of further explanation re: why the recommendation is being made nonetheless even if your concerns are valid.

Run4Us

Hi All.... I wanted to update everyone with what I found out and my decision. I went for a second opinion. Where I live there is a group of Drs from every field that will review your pathology, history etc and give you a recommendation. I met with them... on this panel there were... med oncs, reconstruction surgeon, radiation onc, breast surgeon..etc..you get the idea. They actually called in 2 other radiation Oncs to consult. There recommendation for me was NO to rads. Several reasons were given.

1. The standard is if the tumor is 5 cm or larger you radiate...mine was 3.8

2. If you have 4 nodes or more involved....I had 2

3. Margins are not "clean" mine were

The Drs looked at my pathology and my reports from my first diagnosis and felt the risks outweighed the benefits. By doing rads again I run the risk of other cancers. My chest wall and lungs are at risk for scar tissue. Would need a different reconstruction...I have expanders in and reradiating will damage the blood vessels further. I also have a higher risk of wound infection.

As of right now there is no indication I have BC. Doing rads right now does not mean I won't get BC again...remember it didn't work the first time. The Drs said they would like to keep something in our back pocket incase it does come back. If I do rads now there is no chance of me doing it again. The Drs said they would like to have as many things as they can to throw at the cancer God forbid it comes back.

After looking at all the pros and cons I have decided that I am not going to do rads at this time. Please know this was a very difficult decision to come to and not one I made lightly. I feel I made the right choice for me. I feel good about my decision and I actually slept for the first time in a long time. I wanted to stop back in and let everyone know what I decided and thank all of you for your support.

Lisa