Radiation after DCIS after double mastectomy?

hikerchick

Hi all. I was suprised to have my radiation oncologist recommend 6 wks. of radiation on my right side after having a double mastectomy. His reasoning is: it was SO close to the chest wall (0.7 mm)and so large (6cm) and grade 3, but no invasive on this side. Does anyone have experience with DCIS so close to the chest wall? What were you told? My entire fascia (lining over the chest muscle) was removed also, so any traces in that area should be long gone. Data on this proximity to the chest wall is just not available, that I have found, at least. This is such a gray area, to me.

Different Ballgame

I had DCIS where margins were not clear
Within 2 weeks of each other, twice I had surgical biopsies where margins were not clear. I had 0 Stage DCIS. I then became extremely aggressive and opted for a contralateral mastectomy (removal of one breast with cancer and one breast without cancer). About 2-1/2 years later invasive carcinoma on the scar appeared. I was in the 1% category for recurrence, meaning 99% of the women who had 0 Stage DCIS, no cancer in sentinental lymph nodes, NEVER get it back. After the contralateral mastectomy, no radiation, no chemo, and no Arimidex were required. The recurrence required radiation and Arimidex. My DCIS was not close to the chest wall.

Your doctor is being extremely aggressive, in your favor. How lucky do you feel? Radiation is no picnic but neither is the return of cancer. This is a tough question. I hope there are some sisters on this board who can answer your question.

Have you researched with following: Anderson Hospital in Texas, Mayo Clinic, American Cancer Society?

Hugs,
Janelle

mydonny1021

DCIS
Hi there...
This is the first time I have been on this site and your post was my first click.
I am not writing this to scare you - just to learn from my mistakes. Remember - every situation is different.
I was 35 years old when diagnosed with DCIS. I did it all - Double mastectomy, chemo (I had a family history) The only thing I didn't do was tamaxofin...(my choice)
4 years later, after a major seizure in September 2010, I now have mets to my bone, liver and brain. Its almost hard to write that. I never thought it would be me.
So my advice is...If the doctors feel a need for radiation, maybe there is a good need. This cancer is scary......plus, radiation is simple, quick and painless....:-)

disneyfan2008

DCIS also
lumpectomy and 8 wks daily radiation and now tamoxifen!

Barb A

I wish I had radiation
Hiker Chick, I had a mastectomy 10 years ago with DCIS. I didn't have rads or chemo, just Tamoxifen for five years. Eight years later, I was diagnosed with IDC in the reconstructed breast. I don't know if it was a new cancer or recurrance or that if I'd had rads or chemo, would I have had cancer again. Everyone is different. Radiation can only be done once in an area. If I'd had it done the first time and still got the second cancer, I wouldn't have been able to have rads there again. All in all, I wish I'd had the rads the first time around.

The decisions we have to make are tough ones. Research, ask questions, list your options and pros/cons. From there, you have to trust your doctors and your heart to know what's best for you. My thoughts and prayers are with you.

Barb A

hikerchick

Barb A said:

I wish I had radiation
Hiker Chick, I had a mastectomy 10 years ago with DCIS. I didn't have rads or chemo, just Tamoxifen for five years. Eight years later, I was diagnosed with IDC in the reconstructed breast. I don't know if it was a new cancer or recurrance or that if I'd had rads or chemo, would I have had cancer again. Everyone is different. Radiation can only be done once in an area. If I'd had it done the first time and still got the second cancer, I wouldn't have been able to have rads there again. All in all, I wish I'd had the rads the first time around.

The decisions we have to make are tough ones. Research, ask questions, list your options and pros/cons. From there, you have to trust your doctors and your heart to know what's best for you. My thoughts and prayers are with you.

Barb A

Thank you
Thank you all for your feedback and help. Not many seem to have it less than a mm from chest wall. Wish I could find someone. Still learning navigation of this stuff. Very thankful for the connection to you all.

hikerchick

Different Ballgame said:

I had DCIS where margins were not clear
Within 2 weeks of each other, twice I had surgical biopsies where margins were not clear. I had 0 Stage DCIS. I then became extremely aggressive and opted for a contralateral mastectomy (removal of one breast with cancer and one breast without cancer). About 2-1/2 years later invasive carcinoma on the scar appeared. I was in the 1% category for recurrence, meaning 99% of the women who had 0 Stage DCIS, no cancer in sentinental lymph nodes, NEVER get it back. After the contralateral mastectomy, no radiation, no chemo, and no Arimidex were required. The recurrence required radiation and Arimidex. My DCIS was not close to the chest wall.

Your doctor is being extremely aggressive, in your favor. How lucky do you feel? Radiation is no picnic but neither is the return of cancer. This is a tough question. I hope there are some sisters on this board who can answer your question.

Have you researched with following: Anderson Hospital in Texas, Mayo Clinic, American Cancer Society?

Hugs,
Janelle

Will check
Thanks. I'll check Anderson and Mayo. I've checked ACS. Can you tell me more about what you mean by "radiation is no picnic"?

Thanks,
Nancy

Dawne.Hope

hikerchick said:

Thank you
Thank you all for your feedback and help. Not many seem to have it less than a mm from chest wall. Wish I could find someone. Still learning navigation of this stuff. Very thankful for the connection to you all.

a link
Hi hikerchick,

I had DCIS, but mine was extremely close to the skin, opposite of yours. I agree with above that if your doc wants to do it ... I would err on the side of aggressive rather than not aggressive enough.

There is a whole section over on breastcancer.org where dcis is discussed. I'll post that link for you. A user named 'Beesie' is extremely knowledgeable on the subject.

I hope you find the answers you're looking for. Bless you!

dh

http://community.breastcancer.org/forum/68

Boppy_of_6

hikerchick said:

Will check
Thanks. I'll check Anderson and Mayo. I've checked ACS. Can you tell me more about what you mean by "radiation is no picnic"?

Thanks,
Nancy

No picnic
Nancy I do not want to speak for Janelle but I think by saying radiation is no picnic she was saying that while it is not as hard as chemo it is not always easy. some women have extreme fatigue and burn. I had 30 rad treatments, I did burn some but not terribly. It is like all of the treatments we each handle them differently. Overall mine were not to awful. I used my creams a lot. I finished in Sept. 10 and still have tan lines on that breast. God Bless
(((Hugs))) Janice

hikerchick

Dawne.Hope said:

a link
Hi hikerchick,

I had DCIS, but mine was extremely close to the skin, opposite of yours. I agree with above that if your doc wants to do it ... I would err on the side of aggressive rather than not aggressive enough.

There is a whole section over on breastcancer.org where dcis is discussed. I'll post that link for you. A user named 'Beesie' is extremely knowledgeable on the subject.

I hope you find the answers you're looking for. Bless you!

dh

http://community.breastcancer.org/forum/68

Thanks
Beesie is really great. Wish I had time for more posting!!

Thanks,
Nancy

cahjah75

I did not have
DCIS but did have Invasive Lobular Carcinoma 6.1cm and close to chest wall. I had bilateral mastectomy and my surgeon did not think I would have chemo or rads but oncologists thought otherwise. I did not have reconstruction. I had my 14th radiation today out of 28.
Char

Angie2U

Boppy_of_6 said:

No picnic
Nancy I do not want to speak for Janelle but I think by saying radiation is no picnic she was saying that while it is not as hard as chemo it is not always easy. some women have extreme fatigue and burn. I had 30 rad treatments, I did burn some but not terribly. It is like all of the treatments we each handle them differently. Overall mine were not to awful. I used my creams a lot. I finished in Sept. 10 and still have tan lines on that breast. God Bless
(((Hugs))) Janice

Rads are NOT easy! Some
Rads are NOT easy! Some burn, some have a lot of fatigue, but, it is a life saving treatment. It kills any stray cancer cells left behind from surgery.


Good luck to you if you do have rads.


Hugs, Angie

hikerchick

cahjah75 said:

I did not have
DCIS but did have Invasive Lobular Carcinoma 6.1cm and close to chest wall. I had bilateral mastectomy and my surgeon did not think I would have chemo or rads but oncologists thought otherwise. I did not have reconstruction. I had my 14th radiation today out of 28.
Char

How is trtmnt going for you, Char?
What side effects are you having? I will likely get simulation 2/2 and begin rads next week. Why did the surgeon think you wouldn't need add'l treatment if you had a 6cm invasive tumor? I'm beginning to think some surgeons are just very specialized at cutting and not very involved with the whole picture. I see a nurse practioner for almost everything but surgery itself. I hope i can find time to keep in touch with you as we both go through this.

No reconstruction for me either.

Nancy

DianeBC

Dawne.Hope said:

a link
Hi hikerchick,

I had DCIS, but mine was extremely close to the skin, opposite of yours. I agree with above that if your doc wants to do it ... I would err on the side of aggressive rather than not aggressive enough.

There is a whole section over on breastcancer.org where dcis is discussed. I'll post that link for you. A user named 'Beesie' is extremely knowledgeable on the subject.

I hope you find the answers you're looking for. Bless you!

dh

http://community.breastcancer.org/forum/68

I would also rather be
I would also rather be aggressive in treatment, rather than not. We have to do everything we can to kill the beast, so, we can live a healthy and long life.


Good luck to you!