Refusing radiation treatments?

Rocky... take note I said it was my opinion on Tamoxifen. I am not a doctor and do not claim that all meds or any meds work for everyone.. Nor do people handle all drugs the same. I gave MY experience and MY reasons.

Thanks for sharing that.  But I dont agree with you that Brachytherapy is "less controllable than external beam radiation".  At least the method - Savi - that I had.  It is seed therapy, there is not a beam involved.Thats why the criteria to qualify for this type of rads is so specific.   And i had numerous ct scans and other rad exposures during dx and tx time that exposed my entire upper body.  I dont believe for a second I could have this eye dx within 12 mos of not having anything wrong with my eyes.   

Beth, to jump back into the fray , just as I mentioned in an earlier post that NSJ2's diagnosis is very different from yours, so too is your diagnosis very different from bdavis's diagnosis. The risk of mets from one or two microinvasions is not the same as the risk of mets from a 1.9 cm area of IDC and a positive node.  I had the first diagnosis and based on my oncologist telling me that I had only about a 1% risk of mets, I decided to not take Tamoxifen.  If I had the second diagnosis, even with a BMX, I pretty sure that I would be taking Tamoxifen.

As I suggested in my earlier post, it's certainly worth it for you to ask your oncologist what she thinks your risk of mets it, given that you had a couple of microinvasions. Then you can make your decision on Tamoxifen from there. 

As for how easy - or not - Tamoxifen is, I think it's important to remember that Tamoxifen comes with both quality of life side effects and a small risk of serious side effects. The quality of life side effects can be quite obvious and difficult for some women, while other women experience very few side effects or none at all. The serious risks are something different, since they aren't necessarily things that affect your every day life or things that you will even notice until they happen. These risks may hit you all of a sudden. Of course the most serious risks (DVT, stroke, uterine cancer, cataracts) are not common but if you have any pre-existing conditions or a family history of any of these conditions, your risk can be considerably higher. Not to be a downer here, but so often on this board the discussion focuses only on the quality of life side effects, with no mention of these other more serious risks.  Personally I believe that any decision on Tamoxifen should include an assessment of how susceptible one might be to these more serious risks.  

Bessie and CT,  so glad you chimed in with detailed explanations.  I too am very analytical and am not a sheep.  I don't just follow what one doctor says because another doctor will say something different.  I have even a "heavier" dx and I did try Tamoxifen, but decided against it.  Quality of life is very important and of course each person has to weigh their own fears of recurrence, etc.  I'm only 1 year 5 months out now, but so far so good.  Cancer never scared me... treatment did :-).

So one can get LE from having radiation even when there was no lymph node removal in surgery (aka pure DCIS)?

NSJ2

NSJ2, I believe the risk of LE is when at least one lymph node is removed.  Radiation can increase the chances from that point on.  I just checked it out to be sure and the article I found here gives some information.

FAQs-Lymphedema-Risk.pdf (application/pdf Object)

From reading your sig/dx line, it looks like you wouldn't be at risk for LE, although radiation can thicken the skin and cause changes to the breast.  Some ladies come out with a larger breast, some smaller and some have no change.  My breasts looked great until 3 months after radiation finished.  That is when my breast had swelling.  BS said it was thickening, MO said it would go away, RO agreed with me that I should treat it as LE to be safe.

You can actually develop radiation induced brachial plexopathy (RIBP), which is a form of lymphedema, from radiation alone, even if you did not have any nodes removed. 

WHAT IS RADIATION INDUCED BRACHIAL PLEXOPATHY?

Topic: radiation-induced brachial plexopathy

DVT is deep vein thrombosis. It's the side effect of Tamoxifen that scares me the most. I know that the risk is very very low, but two people that I was very close to both died from DVT, and when you know someone who died of DVT, other people start coming out of the woodwork with other stories of people they knew who died of DVT. None of the cases I know about were the result of Tamoxifen or any drug, and not everyone who gets DVT dies, but to me, DVT is much scarier than breast cancer, because it can be so sudden and immediately impactful, and because there may not be any symptoms in advance. Someone who seemingly has no bad side effects from Tamoxifen could suddenly develop DVT, or one of those other very rare but very serious conditions.  

That's not to scare anyone off Tamoxifen. The risk of DVT, and all other serious side effects, is very low. But Rocky, I agree with you that no one should blindly follow the recommendations of their doctors or accept "standard of care" treatments without asking some questions about their risk level with and without the treatment, and understanding both the pros and cons of the treatment. 

Edited to add:  CTMOM, we posted at the same time.  At least you have an example of someone who survived DVT!

Bessie,  Oh my... I forgot about the RIBP!  Man, you have your facts down... I like that in a person :-).  When my breast first swelled I was a mess.  I recall reading about RIBP, but moved on.  I so thought I was in the clear when my breasts looked good and all I was waiting for was my hair to grow back, forget about cancer and get on with life.  No such luck.  I am very sensitive to various sensations, especially with my body, so you could only imagine what this "princess and the pea" went though went my breast was all of a sudden bigger.  Anyway, I hope no one here finds themselves in the LE world or the DVT one for that matter.

Congratulations!

I had a very similar diagnoses to Maize's and my oncologist recommended not to do radio and be checked regurlarly evry 3 months by him and by my breast surgeon.

that's great news!!!!!   congratulations!

Bobbin

I too was diagnosed with DCIS grade 2. Had lumpectomy in Aug, all cancer had been removed at biopsy. I decided not to have rads after much research, praying and debating. Doing mamo every 6 months. From the beginning there was so much to take in and process and I didn't think I would get thru it and not have a day that I didn't think about it every minute, but I'm doing good right now. The main thing I wanted to say to you is there is an article in today's Dallas Morning Newspaper about the use of mamos and how over treatment is very common. Doctors want to immediately do all the treatments sometimes radicial treatments and there is no solid proof that death would have occured. If you can get that article and read it it may help you. Good luck, and when you make your final decision you have peace about it.

I'm not really sure what the size was I had a biopsy and they got it all there, so no one has really ever said the size, but it was small. When he did the lumpectomy he took out tissue the size of a walnut, and no dcis was found. The newspaper link is  dallasnews.com. The study was published in New England Journal of Medicine which is a very well known medical journal in the states. There is no doubt the decision is a hard one and it is always at the back of my mind, but I feel at peace about the decision I have made and pray you will find that peace too. Keep me informed.

I have been following the conflicting opinions of yearly mammograms. I can only be thankful that I have had yearly mammograms, I am glad that I have.

At 61 following my needle biopsies, biopsies done on tissue from three lumpectomies there was no 'invasive cancer cells' from those tests.

However, following my mastectomy there were two small areas of micro-invasive cells discovered. I view myself as very fortunate that the mastectomy took care of the cancer. My oncologist looked over all my slides and decided that since there were only two areas I did not need chemo or radiation. I am mighty relieved.

I for one have benefited from early diagnosis. When I read the studies and the recommendations I keep looking a my own experience. Had I waited another year to get the mammogram what kind of outcome could I have expected.

I never thought I would consider myself fortunate after having a bi-lateral mastectomy in October, but I do consider myself fortunate. Yes, I would rather have not had breast cancer, but it was caught early AND my chiildren are gone and raising their own children.

I don't think there's a way to un-ring the cancer bell once we have it. I am thankful for the technology which can detect it in it's earliest forms.

I have to admit that I would have argued against radiation, but the fact that they couldn't get clear margins after three lumpectomies took that option off the table. Had it been on the table I know I would have balked at radiation, but I also hadn't done the necessary research to make an educated argument against radiation.

I now believe more than ever in yearly mammograms, especially for older women.

Lor--, that is one of those tests the surgern orders pf the tissue from yout surgery so check with them.  Or that is my understanding