Cancelled Rads, now what?

proudtospin

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

Infobabe

 Beesie

All the risk information is in the path report,  I am at low risk,  However risk is always there. 

I don't need to know the risk associated with radiation.  I already know it and I will not have it.  I would go for the mastectomy which is still not off the table.

I will discuss with him that is it my understanding that if there is a recurrence, it will probably be in the first five years, it will be IBC, and it will be at the surgical site.   At this point, all I can say is that my DCIS was small and they took a hunk of breast.

dogsandjogs

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.

proudtospin

dif docs are dif, mine was every 3 months the onco for the first 2 to 3 years, once a year on the surgeon, every six months on the mamo

but sure have heard dif followups, not sure I would worry about it now as the results of your treatment will affect the followup, I currently am dealing with some suspicious stuff on my last mamo so figure, will be put back from the yearly mamo that I only just acheived

dogsandjogs

Best of luck proudtospin. 

Keep us posted!

Infobabe

I had the phone call with Dr. Lagious.  He is a very nice man and easy to talk to.  We spoke for a half hour and he answered all my questions.  The upshot is that I will have no further treatment for this event except for mammography.  I will also ask my MO about an MRI to establish a base line.  I will not be taking Tomoxifen.   

I do hold in reserve a mastectomy but it is an option that is not on the table as of now. If I ever need radiation in the future, I can have it as I have not already been radiated.

It is very reassuring to know that my local doctors and surgeons in my hometown gave me as good treatment as  I would have received at a breast cancer center in a big city or University.

This is his web site: 

 http://www.breastcancerconsultdr.com/index.html 

It is not hard to do.  Basically, I sent him contact information for doctors and a short medical history.  The forms are on his web site so you can see what the questions are.  He will be sending me material including a statement so I can submit the cost to my insurance company.  

barbee59

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!

purple32

Infobabe.I am 54 and opted out of rads due to lung diease.  I have only had LX.

Please look up :
MGH Dr. says radiation not needed in women over 60 . Google.

Mind you , this is for low risk women ONLY.
I would not normally try to tell someone on what to do, but you are asking opinions and I can say with all certainty that at your age and with DCIS, I would not even blink about saying no to radiation.  Nada.

Whatever you decide ... best of luck to you!

Infobabe

barbee59

All I can say is check my posts on this thread.  All the info is there.  Dr. Lagious is world renown and you will get your answer.  

If she needs further treatment like rads or mastectomy, he will tell you.  He will also tell you if your mother needs neither.  Just start with a click on his web site.  It is not hard or confusing.  They do all the leg work of collecting slides etc.

It is worth it.  Just check all the May rads page and decide if your mother can handle it.  I suspect she could handle surgery better.

Infobabe

purple32

I am with you Purple.  I won't totally discount MX but I am getting more and more comfortable with doing nothing further.

When I commented to Dr. Lagious that I heard that lung zaps are hard to avoid, he said they always get zapped (paraphrased).  He mentions heart too.  He did say that scatter radiation is much more under control than it used to be.  Rads hitting the abdomen and throat are due to poor positioning. 

I feel pretty good about the future. I know of another woman who has followed his advise and is 5 years out with no recurrence.  I think they have to stop prescribing rads for every DCIS that walks in the door.  Mine was very small and my good surgeon gave me wide margins.  So today, I am happy and feeling more at ease. 

Infobabe

 barbee59

Barb, also try cancermath.org. 

If you don't already have it, be sure to get the path reports from both biopsy and lumpectomy. 

dogsandjogs

Barbee: What does your Mom want to do? I think it should be her choice---

LuvRVing

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.

dogsandjogs

I agree. I am 76 and skipped radiation due to all the possible side effects and the very small benefit for women over 70.

bluepearl

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.

Infobabe

 bluepearl 

Did you ever have radiation?  Just read all the posts from the May rads group.  Granted, some breeze through but most have issues.  Would you want your 85 year old mom to go through that?  Have you ever had bad experiences from just following doctor's orders and blindly go forward?  I have.

Just a note that the internal radiation, if one qualifies, only radiates a short distance thus providing a larger margin.  The non irradiated part of the breast is untouched.  It has the benefit of not endangering lung, heart, and other internal organs.  I was supposed to have Mammosite but the balloon was too close to the skin.

Infobabe

 bluepearl 

Did you ever have radiation?  Just read all the posts from the May rads group.  Granted, some breeze through but most have issues.  Would you want your 85 year old mom to go through that?  Have you ever had bad experiences from just following doctor's orders and blindly go forward?  I have.

Just a note that the internal radiation, if one qualifies, only radiates a short distance thus providing a larger margin.  The non irradiated part of the breast is untouched.  It has the benefit of not endangering lung, heart, and other internal organs.  I was supposed to have Mammosite but the balloon was too close to the skin.

Infobabe

dogsandjogs

What treatment did you use since you refused rads? 

dogsandjogs

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--

proudtospin

my onco does bloodwork at each visit, in the year that was every 3 months, down to every 6 months now and it has been 4 years

my surgeon has been ordering the mamos but I know that does not seem to be the norm

dogsandjogs

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-- 

proudtospin

I have had docs who did not call with results.  I am a stickler about that as with dif docs I think it is important to have test results with each of the docs. I had a bad experience with a reaction to a med given to me by my PCD but I blamed it on my cancer meds.  I am clearly not a doc so now, I get all results sent to all my docs and have no problem complaining about a sympton.  It is frustrating to get to know how dif guys work

Infobabe

dogsandjogs 

I don't know anything about blood tests.  What exactly are they testing for with regard to cancer. 

proudtospin

it is my understanding that if changes are seen, it can ID problems

then again they check my bp also and it is a joke between me and the nurses that you must tell me a joke to get my bp down to a normal range

Infobabe

proudtospin

I was wondering if there ae any cancer markers in the tests.  Maye the oncologist is looking for something significant. 

SpecialK

infobabe - some oncs do tumor marker blood tests - CEA and CA27/29 are done quarterly for me.  Not all oncs like the CA 27/29 because it can yield false positives because it is a test that is sensitive to inflammation occuring from other sources.

proudtospin

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

Infobabe

 SpecialK

That is interesting. I did know about CA 125 but not the others.  I will have to do some studying up. 

SpecialK

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.

dogsandjogs

My onc said the one of the tests is to see how the liver is functioning on the Aromasin. As we know, all drugs can affect the liver and they want to monitor that.