Refusing radiation treatments?

Maize, I don't think that nurse is correct in saying that you can't have radiation in the future.  What she may have meant is that there is a window of time in which you have to begin treatments after surgery, but it doesn't mean that if you have a recurrence, you can't have radiation after a subsequent surgery.  My RO said this when I met with her.  Her report says "We discussed the risk/benefit ratio and the fact that, if she has a recurrence, she could opt for treatment at that point in time."

 The medication guide that comes with the tamoxifen says that "Out of every 1,000 women who took a placebo, each year 1 got endometrial cancer (cancer of the lining of the uterus) and none got uterine sarcoma (cancer of the body of the uterus).  Out of every 1,000 women who took tamoxifen, each year 2 got endometrial cancer and fewer than 1 got uterine sarcoma."  So the risks are not that great.

All the decisions have been a struggle.  I feel very fortunate that my pathology from lx was very good, however there is that pesky business of high grade and comedo necrosis.....I feel that I have to do what I can at this time to reduce risks.  I have another chronic medical condition, ms, and I have taken and continue to take medications with scary side effects.  I'm going to take a leap of faith that I will be safe, and if not, I will deal with it at that time.  I have to make the right decision for now.  I will do the standard external radiation, and I will try Tamoxifen.  I expect I will get a uterine ultrasound annually.  I guess I just don't want to be down the road and say that I wish I had done more.  Best wishes to all making these tough decisions!

What ive found on this crazy cancer journey - is that its really hard to make decisions not based in fear.  For me, I didnt think twice about radiation, because of the possibility of microscopic cells being left behind.  And the fact that it cut the stats in 1/2 for recurrence.  I did the internal rads because they had less se's.  Now im struggling with whether to take the hormonal therapies to bring my stats down a few percentage points - it doesnt make sense, but like you said, i dont want to have to look back on my decision.  Im taking a month to read all i can about the drug - and to just let the dust settle.  Not sure what Im going to do, but the fear is still there.  Its frustrating because no one can make this decision for me.  Im alone, I have to deal with whatever the outcome, whatever the results are for taking or not taking a pill.  Im pissed that my choices are toxic, but im grateful its not chemo.  

Regarding remissions in MS, it is common to have flares of symptoms that do remit to some extent, but there are usually residual effects.  Some of the symptoms are always there.  At the beginning of diagnosis it was very difficult to decide on a medication to prevent progression.  All 4 of them at the time (2003) were injections.  Getting past the fear of shots is not easy. Today I have a "drug hangover".  My weekly shot makes me sick for about 24 hours.  At first it was horrendously sick, fever, aches, chills, joint pain.  Now it is just a hangover-like blah, a bit of nausea, want to sleep fatigue.

I guess the point is that the decision making is hard.  Once you start on your path, the focus changes.  Before you know it you are adjusting to treatment, or making changes.

Maize.. I opted to not have radiation due to fear of lung damage and heart damage , not to mention skin damage... But I knew I had to do something... So I chose to have a MX. By doing so, I didn't need radiation.

I chose to have radiation after BCS.

I am dealing with the fatigue side effects by going to a great exercise program for BC survivors and taking Omega 3 fish oil supplements along with 2000 mg of panax quinquefolios (American ginseng) a day. All 3 of these DIY cures have been peer reviewed and published in the scientific literature.

For the skin problems, with the permission of my RO, I am greasing myself 3-4 times a day starting after my early morning radiation treatment with Nivea intensive night time moisturizer, Webber's  vitamin E ointment (not sure why this is allowed), LaRoche-Posay Cicaplast, and organic Calendula salve.

I finished all of my 16 treatments on Wednesday.  No itch, no fatigue, no scaling, no skin breakdown. The breast has changed to a most unattractive color. I hope that will change back.

 I went into the treatment with a barely closed wound from my post op staph infection. The wound area got bettter during radiation treatment, not worse.

I have no idea if any of what I am doing is making the treatment less awful, but it's definitely not awful, except for going downtown every day at 7 AM.  might have just paid enough dues with my infection.

 I can do nothing about the long term impacts, except for keeping the sun off of the area, but I know I don't want the long term impacts of invasive BC. So I said yes and managed the side effects as best I could.

 

I'm confused. Maize has already had a lumpectomy with clear margins and her thread is about whether it's possible, and how risky it might be, to skip radiation after a lumpectomy for DCIS. I haven't seen anything in Maize's posts to suggest that she is considering a mastectomy. In fact she mentioned that one doctor told her that a MX is her option if she doesn't want radiation and in writing about that, it seemed pretty clear that this is not something that she wants to pursue at this time. 

Maize, I don't mean to speak for you but with all you've been posting about the confusion about DCIS, I find it interesting to see how this thread has evolved. You are discussing whether it's an option to have less than standard treatment by not adding radiation to your lumpectomy, and others have come here proposing instead that you go back for more surgery, specifically a surgery that will have a much greater impact on your life, for the rest of your life. No wonder there is so much confusion about DCIS. And no wonder so many in the medical community are worried about over-treatment and are suggesting that maybe small areas of DCIS should not even be diagnosed. 

I had a MX because I didn't have any choice about it; I had too much DCIS in a small breast. Everything went well and my experience overall was positive however I live with the MX (and the phantom itching) every day of my life. I know from my experience, and from having read the experiences of many others who've come through here, that the last thing anyone should do is have a MX when they don't need to have a MX and when they are not sure that they want to have a MX (if you know a MX is what you want, great!). Having a MX is not something that anyone should try to convince someone else to do unless it really is the only or best option medically. The idea that a MX is being suggested to someone who doesn't need one medically, isn't considering one, hasn't asked about it as an option and has stated no interest in having one, is actually pretty scary to me.  

If someone is struggling with their decision, it can be very helpful when we share our experiences and explain the factors that played into our decision.  But once someone makes their decision or if they've stated no interest in a particular option, for goodness sake, leave it be. Causing someone to second guess a decision they've already made, or something they've already done, is cruel. 

Okay, I will put my helmet and body armor on now because I know what's coming! 

Beesie... I agree wholeheartedly.  I find it disheartening, sometimes, to see so many women opt for mastectomy/bilateral mastectomy when it may not be medically necessary, especially for early-stage cancers.  But I, also, understand their reasons for doing so, in particular the peace-of-mind issue.

But I agree that trying to encourage someone who didn't opt for a mastecomy; perhaps, did not even need one; and is not interested in having one when it is not warranted isn't helpful.  Mastectomy is not the only option for successful treatment.  It's risky (yes, it's a complicated surgery that does have risks); it's irreversible; reconstruction is, also, risky (ditto); and it can have long-term, disabling effects.  It's not for everyone.

SelenaWolf, thank you. I knew that my post would be unpopular with a few people but I voiced a concern that I know many other women here share. The problem is that it's such a touchy subject that it's rarely spoken out loud.  I really appreciate that you said it out loud.

Betsy, I guess I am taking on the role of hall monitor again. I know I shouldn't but I've been biting my tongue on this for a long time and over the past few months the problem has gotten worse. I've seen so many threads in the DCIS forum where women who've already had a successful lumpectomy, or who've already made their decision to have a lumpectomy, or who've stated no desire to have a MX, are being told over and over again how great a MX or BMX is and how it will let them avoid all the horrific problems of a lumpectomy + rads. I fail to see how that is helpful to someone who's already made her decision to have a lumpectomy.

For those struggling with their treatment decision (vs. those who've made it), of course it's helpful to understand how and why others made their decision. Even more helpful is an honest list of pros and cons for all the treatment choices. They can go through the list and pick out the ones (either pros or cons) that resonate with them. My frustration is when I see posts that talk only about the "pros" of a particular option while also piling on the "cons" about the other option.  That's where I start to see coersion (sorry, I know that's not a good or fair word but it's the one that comes to mind).

So while I don't think that talking about a BMX in a thread where the OP isn't considering one is appropriate, I would be less upset about the direction of this thread if your post had said: "I was afraid of scatter, lung and heart damage, skin damage and needing to avoid sun, and even thyroid issues (I hear its a side effect)... So I too had the BMX... Of course with a BMX you have the risk of complications and pain from the surgery and reconstruction, you might initially be dissatisfied with your results (30% - 40% require revision surgery), you might suffer from post-mastectomy pain syndrome, your muscles will be cut and compromised (they may or may not fully recover), you may have phantom pain and itching (it might go away over time or not), you will lose all sexual sensation in your breasts (some women do get pleasurable phantom sensations), depending on the type of reconstruction you might limit the ability to find a local recurrence... but I was lucky and I do love it... I have no regrets at all... and if God forbid, I get a recurrence now, I still have the option to have radiation."

Maize, sorry for hijacking your thread!  I think there is some great discussion here about how you can avoid radiation or lessen the impact of radiation after a lumpectomy with clear margins and finding of only DCIS.

Edited for typos only.  

mamabr, what a dilemma!  The definition of isolated tumor cells (ITC) is that it is an area of cancer <0.2mm in size - so we are taking about a really tiny tiny invasion into the nodes. Because there are so few cancer cells, technically ITC is considered node negative. So although these tiny amounts of cancer were found in your nodes, officially you are 0/4 on the nodes and because of that, your diagnosis remains DCIS Stage 0. 

But...studies have shown that those with ITC may have a worse prognosis, so that opens up the question of additional treatment - either chemo or radiation to the nodal area.  http://www.breastcancer.org/symptoms/new_research/20090812.jsp

I don't know which path you should take. If it were me, before making my decision I would want to know as much as possible about those ITC and where they may have come from.  

- Is it likely that those cancer cells were placed in the nodes by a surgical instrument or as a result of the prior biopsy? Sentinel Lymph Node Histopathology in Breast Cancer: Minimal Disease Versus Artifact   I recall reading that there are 2nd level pathology tests (types of staining, I believe) that can be done on the cancer cells found in the nodes to try to determine if the cells are DCIS cells that were misplaced or invasive cancers that may have moved to the nodes on their own.

- Was there an occult invasion within the breast, i.e. some invasive cancer that was mixed in with the DCIS and missed by the pathologist, and did this lead to cancer cells travelling to the nodes?  The only way that real nodal involvement is possible is if the diagnosis isn't really DCIS and there was some invasion. 

Have you had a second pathology assessment of the affected nodes and your DCIS tumor samples?  I would want someone to be really searching to find any IDC in the breast tissue because a missed microinvasion could explain the ITC, and then you have a possibly more serious diagnosis.  I would also want someone to be doing another assessment of the cancer cells from the nodes to see if it can be determined if those cells are DCIS or IDC - my understanding is that a difference usually is visible under the microscope (here again some specific staining may be required - I'm not sure about that). 

I would also want to know from both oncologists what they think my risk of mets is based on a diagnosis of triple negative DCIS Stage 0 with pN0(i+), both without chemo and with chemo.  

I don't know how helpful this is.  I can't tell you what you should do - I don't even know what I would do in your situation - but maybe these suggestions will lead to more information that help you with your decision.  Good luck!

Hi Maize,

I hope you realize that I shared my experience with the hopes that it would help you (or anyone else) trying to decide things. I prefaced my comments with stating that I did not want to offend anyone at all, but I think I may have, based on comments left here. That was not my intention at all.

I sincerely hope that you ascertained that I was not trying to encourage you toward a mx at all. I know that when I was struggling with what to do, it really helped me to just hear about others' choices. It truly is such a personal choice in trying to make these challenging decisions.

I try to share with a humble "spirit" and try to never  have an "edge" or a know-it-all attitude because I certainly do not know it all; I just know what I experienced. We are all in this together and need to support each other and not "come at each other." This forum is a place to find encouragement, not ridicule or condemnation, to read others' experiences, and to learn things we don't know via those experiences. It works better with a total feeling of being accepted here when we ask questions and when we comment/share.

I truly hope you find your OWN path to take and the end result is peace for you!

Take care- 

Shayn, I too had a pal last year who was diagnosed with DCIS and found it hard to keep silent as she told me her details.  She had a very small spot and chose to reject radiation.  I though she seemed to be shopping for a doc to agree with her so it disturbed me.  I kept my opinions to myself.  When she announced that she had found a doc from MSK  to agree with her plan, well, it is her life and even though some of her thoughts were odd to me, it is her choice.  And I am by no means expert.

diet changes are good but mano, if that was all we needed to do to stop this junk....it would be duck soup

I confess I try to eat healthier than before, I am the queen of dark green leafie veggies and eat them almost daily!

my weakness is BREAD, so making it whole grain.  Not a sugar person but do confess to artificial sweetner in my one coffee per day, have not managed to give that up!

I am not going the Steve Jobs route~~