Cancelled Rads, now what?

no, I was advised at the time that mastectomy was over kill and went with the advise of my 3 docs at the time

they felt what we were doing would be sufficient

Thanks Infobabe:

I will ask my onc those same questions. When I asked him about how often should I do amammogram he said "Not yet'  Ok-----

How often do I need to see you, I asked. Every few months - I'll order blood tests every 6 months.'

That was all.  I didn't know what to ask because my last cancer was in 1982 and after the mastectomy the only follow-up was a yearly blood test. It is so much more complicated these days with all the various tests and scans.

Best of luck proudtospin. 

Keep us posted!

I've been looking all over for someone who has something similar to what my mom has- I'm so glad I ran across your posts. I won't be much help to you, but it's nice to know someone else has the same reservations about rads that I do for my mom. here's her story: If anyone has suggestions, we're seeing the RO on Monday.

 My 85 year old mother was diagnosed with Paget's disease of the nipple. Her mammogram also detected something 50mm in so they did an MRI guided needle biopsy and found DCIS.

A wire guided "apple core" lumpectomy was performed (in June) that took the nipple and the DCIS.

The margins were clear, DCIS was slow growing and stage 0 and her recovery has gone very well. Sounds great so far. My anxiety is this:

Her doctor has her scheduled to see the RO and I don't want her to have to go through radiation treatment. I will be going with her to the appointment, but I'd appreciate any extra info from whoever can help.

Does anyone have any statistics on radiation treatment for the over 80 year-old?

What side effects were there? I've heard about fatigue and radiation burns- but how much fatigue? how severe the burns? and will it really lengthen her life?

Her predicted chance of recurrence is aboout 3-5%, is it worth it to go through rads? If the DCIS recurs, how long does it take to grow into something that would be a problem? If it does recur, what would happen if she just let it go?

Can you believe it? Breast cancer at 85! REALLY???

I can only imagine what you all are going through. I wish you all courage, strength and better health! Thanks for any help you can offer!

If you were my mom (and mine is 82) I would go with just the lumpectomy.  Your DCIS is small and doesn't appear to be aggressive (grade 1). 

DIEP is extremely tough surgery.  I think that's overkill for your situation. 

Good luck to you, whichever path you choose.

I found ask-an-expert at John Hopkins very helpful and all my questions got through. Lillian will not do diagnosis over this forum as well she shouldn't. If she gets all the info, she advises as to course of action, and/or getting a second opinion. or whether you are in good hands. While this forum is for sharing experiences which is immensely helpful, people can and do come up with Dr. Google answers that may not be correct. Also, many people tend to report less than ideal experiences vs those with good outcomes so one may become "depressed" thinking that breast cancer IS always what you read here. I say that from experience too. Breast cancer is curable in the majority of women treated when it hasn't gone beyond the breast; it is NOT a death sentence. DCIS is often over-treated, and low grade is the one most often over-treated. Watchful waiting + tamoxifen is the usual course, sometimes even lumpectomy. There is a new treatment where radiation is given during the lumpectomy to the tumor bed which results in the same success rate as full breast radiation WITHOUT the other complications. It is rarer to get though. Breast cancer is complicated from many points and while grade 1-111 are that, the numbers are juggled in terms of importance, so that a grade 1 can still become a grade 1V, though rare. Now they have found even MORE genetic variations! Best answer is to follow your oncologist's advice with a second opinion under your belt, then follow what you feel most comfortable doing. There is nor should there be, any forum on google that answers client's cases without knowing the client and all of her profile. Information should be guideposts leading you to professional help.

I tried Aromasin, but the SEs were really bad - and I'm pretty good handling pain.  I am supposed to see my onc to discuss other options, but haven't done it yet.

I had a mammogram recently (it had been one year since the lumpectomy)Everything was ok. I've also had some blood tests - they should be done every 6 months or so.  The onc is very conservative - I actually scheduled the mammogram myself!  and when I asked about blood work he said "not yet."  Not sure if that is good or bad?  I'm thinking of going to the rad who gave me my original diagnosis, but he doesn't take United Health Care. But maybe I could offer to pay cash for the consultation.  I haven't done that either. 

I need to get my act together--

My surgeon said at the pre-op visit that he didn't need to see me again unless I had a new suspicious lump. 

My internist does blood work every 6 months too - but he never calls with the results - I still don't have the results from January!  When I called his office for the 3rd time I asked if he would have called me if something serious showed. Absolutely, they said.

But when I checked him out on the Internet a former patient said he quit going to him because "he never got his blood work results!"  Hm 

This guy is a great doctor, but he has opened his own office now and I think he is overwhelmed. He won't allow the office staff to give out the blood work information - so that's where the problem lies. Very frustrating-- 

yeah, the tumor markers are done at my hospital, did not remember the name of the test

infobabe - your onc may not do tumor marker for you because of your DCIS dx.  The thought would be that because DCIS is confined to the duct, and your path revealed nothing else, you would not have cells circulating in your bloodstream, so the test would reveal nothing of value.  I had node positive IDC which is why my MO does these markers.  My experience is that maybe 1/3 to 1/2 of oncs do markers - but for IDC/IBC/ILC types.