new dcis diagnosis

Sarabear

hi im sara im 32 years old and decided to have radical double mastectomy due to family history of breast cancer and several other health risks upon getting back the pathology reports i found out i had dcis in the left breast i understand that now i am basically cured because i got diagnosis after the removal of all my breast tissue so i dont understand why my dr would be considering radiation i already have expanders and dont have anything left to radiate i feel very alone and clueless in all of this so i could really use some feedback please
thanks

camul

Hi Sara
and welcome to this site. Sorry you are going through this. I originally had stage 1, grade 3 and asked my doctor, why I needed chemo after a mastectomy when the lymph nodes were clear, and his reply was you may never get all the breast tissue and this was the best insurance not to have a recurrence.

I would imagine that a family history of bc would also play a part in his recommendation for radiation. I take it the mastectomy was being done as a safeguard against getting bc, and that you had no idea that the bc was already there?

You are not alone, all of us on this site have had or do have bc. We are anywhere from DCIS to Stage IV. Some are dancing with NED, and some of us are fighting with all we have. I am sure you will hear treatments from some who have had DCIS and they have had all different treatments.

I wish you the best on whatever treatment you decide on, and remember you can always get a second opinion.

EveningStar2

Hi
Welcome. I had DCIS and then lumpectomy with radiation. I've had a reoccurance of DCIS and have elected to have a bilateral mastectomy. I would be questioning the doctor about the radiation and if I was not comfortable with the answer, I'd go for a second opinion. It doesn't make sense to me but I'm sure there are other factors. One thing I will bring up is that radiation is NOT the "easy" treatment that the doctors seem to think it is. But _you_ need to be comfortable with your treatment.

Maureen

cinnamonsmile

Sometimes even after a
Sometimes even after a mastectomy, the margin of non-cancerous tissue and cancerous tissue is too small and radiation may be needed. I think most of us think that if we have a double mastectomy we are in the clear of radiation. Breast tissue doesn't just consist of the breast, which I found surprising. It covers a much larger area.Perhaps the doctor doesn't think the margins are big enough and that their could be a bit of cancer left somewhere in the tissue that is left, but it is only a guess.

Most of say we are in No Evidence of Disease (NED), not cured (there really is no cure for cancer yet). Although the chance of DCIS has very little chance of coming back after a mastectomy, there is still a chance, although slim. I do know of a few women on breast cancer discussion boards that had it come back after mastectomy.
I would ask your radiation oncologist why you may need radiation. I do think it is up to the radiation oncologist to determine it. If you are a candidate for rads, I would think it was because your margins were too small. But I am not a dr. so I can't say for sure.
Thank goodness you had the surgery and found your DCIS fairly early!!

breastcancer.org and cancer.org have wonderful information on breast anatomy, breast cancer, treatments, side effect, lots of good information! You could even call the American Cancer Society and they can email you the information you need.1-800-227-2345. Give them a call. The woman I talked with was so calming and full of information. She even helped me with things I didn't know I needed help with!!
Let us know how you are doing!

carkris

cinnamonsmile said:

Sometimes even after a
Sometimes even after a mastectomy, the margin of non-cancerous tissue and cancerous tissue is too small and radiation may be needed. I think most of us think that if we have a double mastectomy we are in the clear of radiation. Breast tissue doesn't just consist of the breast, which I found surprising. It covers a much larger area.Perhaps the doctor doesn't think the margins are big enough and that their could be a bit of cancer left somewhere in the tissue that is left, but it is only a guess.

Most of say we are in No Evidence of Disease (NED), not cured (there really is no cure for cancer yet). Although the chance of DCIS has very little chance of coming back after a mastectomy, there is still a chance, although slim. I do know of a few women on breast cancer discussion boards that had it come back after mastectomy.
I would ask your radiation oncologist why you may need radiation. I do think it is up to the radiation oncologist to determine it. If you are a candidate for rads, I would think it was because your margins were too small. But I am not a dr. so I can't say for sure.
Thank goodness you had the surgery and found your DCIS fairly early!!

breastcancer.org and cancer.org have wonderful information on breast anatomy, breast cancer, treatments, side effect, lots of good information! You could even call the American Cancer Society and they can email you the information you need.1-800-227-2345. Give them a call. The woman I talked with was so calming and full of information. She even helped me with things I didn't know I needed help with!!
Let us know how you are doing!

I had scant but scattered
I had scant but scattered DCIS the first time, also an 8 mm tumor, I had a mastectomy, and chemo. A year later I had a local recurrence.then had rads. Perhaps the way your dcis presents, they feel you are at greater risk for local recurrence? you shouldask your doc.

jnl

EveningStar2 said:

Hi
Welcome. I had DCIS and then lumpectomy with radiation. I've had a reoccurance of DCIS and have elected to have a bilateral mastectomy. I would be questioning the doctor about the radiation and if I was not comfortable with the answer, I'd go for a second opinion. It doesn't make sense to me but I'm sure there are other factors. One thing I will bring up is that radiation is NOT the "easy" treatment that the doctors seem to think it is. But _you_ need to be comfortable with your treatment.

Maureen

Rads are done to kill any
Rads are done to kill any stray cancer cells left after surgery. Most with a lumpecotmy have them, as I did, and, some have rads after a mastectomy, not all.

Wishing you good luck,

Leeza

Gabe N Abby Mom

Hi Sarabear,
I really wish
Hi Sarabear,

I really wish you didn't have the need for us. I have found the people here are caring and warm and truly want to help. I hope you find that too.

Radiation is pretty common. Even with a modified radical mastectomy they don't remove ALL the breast tissue. So there is the possibility of a few cancer cells (not clustered, and not visible in any way) hanging out in that remaining breast tissue. The purpose of the rads is to kill those individual cells and help ensure that you have no recurrence.

Will radiation be fun? Heck no. It's very tedious. Fatigue and skin issues are the most common side effects. But it is doable.

BTW, I had a modified radical on the left cancer side, left axilla dissection (12 of 14 nodes positive) and simple mastectomy on the right non-cancer side. My rads schedule after surgery was 2x a day, 6 hours apart, for 22 days.

I hope this helps, and please come back to let us know how you're doing.

Hugs,

Linda

disneyfan2008

I too had DCIS-lumpectomy
I too had DCIS-lumpectomy and radiation...followed by tamoxifen (starting 5th yr). I think just a precausion-I am very small breasted and not much left after my surgery!

I wish you the best....if unsure get second opinion...

Denise