DCIS, lumpectomy done, next?

patbc08

Hi - I was recently diagnosed (3/25) with DCIS-very early (1.5mm tumor); negative margins; just turned 42 (what a birthday present!)no family history. I am ER+. My Oncologist is giving me the option of tamoxifin only (because I am stage 0 and very small spot) or radiation w/tamoxifin.
Does this sound like you? I am really torn between going the med alone or doing them both. I know the med has side effects for some people, but I think the benefits out weigh them and I am ok with giving it a try. I know I am very lucky considering what others are going through right now. God bless all and stay strong!

ninjamom

Like you, I recently had a lumpectomy (4-10, day before my birthday)
My oncologist recomened I do both (stage 2 with 1 0f 5 nodes invasion). I'm sharing this with you because I'm also confused and torn with my treatment, you are not alone. Consider your peace of mind when you make your decision. How soon will you start with your treatment? Good luck and God bless.

Unknown

Hi pat...
My situation was much more advanced and I had 2 radical mastectomies, months of chemo, weeks of rads, and 7 years of tamoxifin.
The LEAST problematic of all these treatments was the rads. I am just saying that if rads will help ease your mind and take you into the future with more peace, then the relatively minor side effects (for me at least) will be well worth it.
All I experienced during 5 weeks of daily rads was some fatigue and a bad sunburn. Both of which were temporary.

seof

Fear and confusion are part of each new stage in cancer treatment...there are so many decisions to make, and none of them sound good. I always say it is not simple, like arithmetic...a+b always = c, no variations or guesswork involved. Cancer is nearly all guesswork based on statistical evidence with no guaranteed outcome. You will have to make the decision that you feel most comfortable with based on the best information you have at hand. However, I will say that my experience, and all I have heard of others' experience indicates that the side effects of radiation are not fun, but not as bad as chemo. I would not let fear of the side effects keep you from doing radiation. Ask the Dr. for statistical evidence of folks in your position who have done it both ways...what is the comparison in long-term survival, or recurrence rates? (look on M.D. Anderson website for studies, or other medical university websites for comparison).

Best whishes, seof.

cabbott

I remember my surgeon telling me how lucky I was to have caught things early (4 mm invasive ductal carcinoma on the largest spot-two spots too far apart to save the breast). I really didn't think I was so lucky to have cancer, early or not.As I learned more about breast cancer, I felt more and more lucky. Like you I was ER+, which meant tamoxifin rather than chemo. After menapause, you can do an aromatase inhibitor (I'm now on exemestane) which works even better at controlling breast cancer. Radiation was not in the charts for me because the two spots led to a mastectomy. However, if I had been able to stop at a lumpectomy, I very well might have gone for the radiation. Radiation plus lumpectomy actually is better than mastectomy for survival rates (but not all that much better). Stage 0 is confined to the ducts, so the risk is less. Radiation might get some cells in the area that surgery missed that may or may not be stage 0, so it might be worth the time and trouble. There are various sorts of radiation too to consider. You can get the implanted sort that takes a few days in the hospital or the once a day M-F sort that takes a few weeks. With all these decisions to make, it might be wise to consult a radiation oncology specialist and a second oncologist. They could give you a frank opinion based on their experience and help you make up your mind. Take your path report with you (and maybe slides of your cells) so they can analyze all markers and give you stats on your kind of cancer in detail. Good luck!

patbc08

cabbott said:

I remember my surgeon telling me how lucky I was to have caught things early (4 mm invasive ductal carcinoma on the largest spot-two spots too far apart to save the breast). I really didn't think I was so lucky to have cancer, early or not.As I learned more about breast cancer, I felt more and more lucky. Like you I was ER+, which meant tamoxifin rather than chemo. After menapause, you can do an aromatase inhibitor (I'm now on exemestane) which works even better at controlling breast cancer. Radiation was not in the charts for me because the two spots led to a mastectomy. However, if I had been able to stop at a lumpectomy, I very well might have gone for the radiation. Radiation plus lumpectomy actually is better than mastectomy for survival rates (but not all that much better). Stage 0 is confined to the ducts, so the risk is less. Radiation might get some cells in the area that surgery missed that may or may not be stage 0, so it might be worth the time and trouble. There are various sorts of radiation too to consider. You can get the implanted sort that takes a few days in the hospital or the once a day M-F sort that takes a few weeks. With all these decisions to make, it might be wise to consult a radiation oncology specialist and a second oncologist. They could give you a frank opinion based on their experience and help you make up your mind. Take your path report with you (and maybe slides of your cells) so they can analyze all markers and give you stats on your kind of cancer in detail. Good luck!

cabbott -
I appreciate your suggestions. I actually did check into mammasite - a very local type of radiation which is 2 x a day for 5 days. This is fairly new but results are positive so far. Two things against me - age (the minimum age right now is 45 and preferrence is 50+) and my breast size (too small! they would be concerned about burn to the skin because the balloon does not have any place to rest). It sounds like a pretty good process if you meet the qualifications. I have learned that "radiation with/without tamoxifin" is the standard treatment. I have been to 2 radiation oncologist and told the same thing which I completely understand because I should do everything I can to do to reduce my risk. I guess the sooner I get on with it the sooner it will be over!

When were you diagnosed?

patbc08

seof said:

Fear and confusion are part of each new stage in cancer treatment...there are so many decisions to make, and none of them sound good. I always say it is not simple, like arithmetic...a+b always = c, no variations or guesswork involved. Cancer is nearly all guesswork based on statistical evidence with no guaranteed outcome. You will have to make the decision that you feel most comfortable with based on the best information you have at hand. However, I will say that my experience, and all I have heard of others' experience indicates that the side effects of radiation are not fun, but not as bad as chemo. I would not let fear of the side effects keep you from doing radiation. Ask the Dr. for statistical evidence of folks in your position who have done it both ways...what is the comparison in long-term survival, or recurrence rates? (look on M.D. Anderson website for studies, or other medical university websites for comparison).

Best whishes, seof.

ninjamom, zahalene, seof, cabbott -

Thank you for sharing your experiences and suggestions. I am going to check out a few more websites. As I responded to cabbot, I am leaning towards the radiation -- I really need to do anything/everything I can to reduce my risk of recurrence eventhough it may not be what I want. I have 2 daughters and I really don't want to have to go through this again. One scare is enough! Best wishes to all of you for many years of happiness and good health!

cabbott

patbc08 said:

cabbott -
I appreciate your suggestions. I actually did check into mammasite - a very local type of radiation which is 2 x a day for 5 days. This is fairly new but results are positive so far. Two things against me - age (the minimum age right now is 45 and preferrence is 50+) and my breast size (too small! they would be concerned about burn to the skin because the balloon does not have any place to rest). It sounds like a pretty good process if you meet the qualifications. I have learned that "radiation with/without tamoxifin" is the standard treatment. I have been to 2 radiation oncologist and told the same thing which I completely understand because I should do everything I can to do to reduce my risk. I guess the sooner I get on with it the sooner it will be over!

When were you diagnosed?

I was diagnosed when I was around 45 and I am now 51. I just celebrated my 5 year anniversery last Oct. 1 and I am doing fine as far as the breast cancer thing goes. After the earlier post I checked in with Medscape and saw the new breast cancer treatment guidelines. It mentioned that radiation reduced reoccurance for your kind of cancer by 50%. That means if you have a 95 percent chance of surviving ten years without reoccurance, radiation would give you a 97.5 percent chance of surviving ten years without reoccurance. Please note this is just an example. I didn't read enough to know your actual reoccurance stats.)Survival would be the same with or without from what I read. In other words, watchful waiting won't compromise your life, but you may have to deal with the beast again. You will have to decide if radiation is worth it. I'm sure you will make the right decision for you.