All Topics → Forum: Just Diagnosed → Topic: Debating Radiation
Posted on: Jul 11, 2012 05:07 PM
enigmas2 wrote:
I was just diagnosed with DCIS stage 0 with clear margins after a lumpectomy. I do not have the full pathology report yet as my Dr. gave me the basics over the phone and I will get the rest at our appointment next Wednesday. I have an MRI scheduled for tomorrow. I was told I 'may' have to have radiation and hormone therapy. In a nutshell the more I read about radiation the less I like the idea. It sounds like too much for my situation as well as a one-shot deal in that you cannot do it to the same area twice. I am just looking for opinions out there.
Posts 1 - 16 (16 total)
Jul 11, 2012 05:10 PM chemoangel wrote:
I had six weeks of radiation and experienced no problems or side effects from it. Don't read too much into anything, the internet can scare you for no good reason. I am 3 years out. :) I as well had clear margins after my lumpectomy. Am on Tamoxifen now.
Jul 11, 2012 05:48 PM enigmas2 wrote:
I am trying not to, I understand how easy it is to scare myself.
But, I want to make sure I make a very informed decision. I am all about doing the minimal amount needed to try and preserve what can be preserved.Jul 11, 2012 06:10 PM purple32 wrote:
Most ppl do get rads. I opted out due to bad lungs. I have IDC.
Good luck with whatever you decide ! Research, and then decide based on what you can live with .
Jul 11, 2012 06:32 PM YramAL wrote:
Ideally, radiation would be a "one-shot deal". It is my understanding that it is used to clean up, so to speak, any stray cancer cells that may remain in the proximity of the tumor.
I am almost 2 1/2 years out from the end of radiation-33 treatments in all. I had some skin breakdown near the end of treatment. Not fun, but I healed quickly once treatment was over. I also was more fatigued than I expected to be. All in all, though, I think it was worth it for a little extra piece of mind beyond just surgery. I do differ from you in that I had IDC. I've been on Tamoxifen since finishing rads with no major side effects.
I hope you make the best decision for you.
Mary
Jul 11, 2012 10:14 PM GrandmaV wrote:
enigmas2, A lot depends on your age, health and pathology report. You may have already seen this, but here's a link that has a wealth of information:
www.breastcancer.org/symptoms/...
Hope this helps
Jul 12, 2012 11:01 AM enigmas2 wrote:
Thank you all for your information!
Jul 13, 2012 09:28 AM Neeners815 wrote:
You could also take the DCIS OncoType test and see what sort of score you get that way, and that might help you make a decision. I was on the fence, too, but my score came back high and I ended up going with rads. I'm almost done, and it's really not been that bad. My skin is breaking a bit, but my fatigue hasn't been any big deal (except the first week when I was getting used to going to the appointments early in the morning!). I only have two more zaps to go.
Jul 13, 2012 11:43 AM, edited Jul 13, 2012 11:44 AM by Shayne
My tumor was smaller than 1cm also, clean margins. I opted for Brachytherapy or internal radiation. 5 days, 2x day - it was quick, no SEs and pain free and just made more sense to me. PM me if you want more info.
Jul 14, 2012 06:38 AM, edited Jul 14, 2012 08:28 AM by maize
enigmas2,
I have concern about the long term effects of radiation, not the short term effects. The short term skin issues, etc., are problems that probably can be coped with. Some women aren't as concerned about radiotherapy, I guess. Everyone has their own opinion about it. It may be that brachytherapy like Shayne had and maybe other types of radiotherapy are significantly safer than conventional radiotherapy that is typically used. I made an appointment to find out about another type of radiotherapy than the standard type. Some reports indicate that this type is safer, some reports indicate it isn't any safer than conventional radiotherapy.
What would be interesting are reports about people who had the typical radiation treatments 15-20 years ago, not just 5 years ago or less, but the longer term results/effects from the more recent types of treatments (by more recent, I mean the type of radiation treatments done after 1980).
As Neeners815 wrote, the Oncotype DX might help. Some women are lucky enough to have such low grade, small areas of DCIS that doctors are willing to have them forego radiotherapy. Hopefully, you will be in that minority who are told that radiotherapy is not necessary.
As I understand it, if you have standard radiation to the breast, you typically can't have radiation to that breast again if DCIS develops again, which evidently leaves only mastectomy as an option if DCIS recurs. Some plastic surgeons seem to feel that if you have radiotherapy and later need a mastectomy, it's much harder to do reconstruction of the breast. That's another dilemma, isn't it?
www.realself.com/question/brea...
Some women have chosen to have a mastectomy just to avoid having to have radiation treatment. I didn't choose that. Some women choose mastectomy because they had testing and found out they are BRCA1 or BRCA2 carriers. Some women who don't have low grade, tiny DCIS choose not to have radiotherapy and decide to take Tamoxifen or an aromatase inhibitor only. Are they taking a big chance or not? Is it ultimately safer to forego radiation or is that too risky to try that? There are medically/scientifically documented reports about the risks of late effects from radiation. Some feel that radiotherapy is essential and must not be avoided and that you have to accept the consequences of it, whatever the future consequences may be. They feel that the benefit outweighs the short and long term risks. I am in the same boat you are in regarding radiation treatments. I do think that Oncotype DX is probably really helpful--you can know the probable risk of recurrence.
Jul 14, 2012 09:06 AM Shayne wrote:
I believe the radiation techniques, traditional rads, are far better than 1980 or even 10yrs ago. So talking with an RO about your concerns would answer most of those questions.
I chose internal rads bc of the low risks, both short and long term.....since Im a mother, I chose to throw everything at this. Im not crazy about doing hormonal therapy, but didnt want to look back and worry if it could have been the one thing that wouldve prevented a recurrence. It lets me sleep at night. All the docs on my team recommended rads for me.
Jul 15, 2012 12:20 AM, edited Jul 15, 2012 12:23 AM by enigmas2
Due to the fact my cancer is grade 2 they are recommending radiation. I cannot do internal radiation because I am under 45. I have weighed the risks and decided on radiation therapy to kick this things ass while it is controllable. I am going to do a hysterectomy rather than hormone therapy due to the fact I was on birth control pills to regulate my period as well as a low tolerance to medications. If there is a side effect ill have it. Plus I don't want one more damn toxic thing in me in the form of man made chemicals...
Jul 15, 2012 01:29 AM Jennt28 wrote:
When we met with the RO my husband asked "what would happen if Jennt28 didn't have the rads now and cancer came back in that breast or nodes". The RO answered that in that case I would be recommended more surgery if appropriate, and rads.
So if you chose not to do it now and were monitored closely for signs of recurrance you can always do it later.
Jenn
Jul 15, 2012 10:03 AM DeborahC wrote:
maize, There are many of us here who had chest radiation 15-25 years ago for Hodgkin's. Our radiation was similar to what you would get for BC - but usually covers more of the body. We now have BC (probably) as a result of our mantle radiation. Recent studies have shown that up to 30% of young women radiated for Hodgkin's end up with BC.
Radiation again is not usually an option - we have surgery and hormone therapy and sometimes chemo. Most of us have had reconstruction. I have TE's and my skin is expanding just fine.
There are lots of other LT effects - heart and lung; but most of us have few problems. If I could go back in time I would have done chemo instead of radiation - but that was not the standard of care 20 years ago (it is now). The radiation did wipe out the lymphoma, so overall it was worth it.
Jul 21, 2012 01:46 PM stepmic wrote:
I am wondering if your oncotype score determines local recurrence at all, the need for rads or only for chemo. I had a mx. Waiting for oncotype results. Thanks...
Jul 22, 2012 01:54 AM firestorm531 wrote:
When it comes right down to it...the decision is yours and I honestly think that's the toughest part of this. Those decisions... Do what you can live with, go with the decision that feels right and doesn't leave you questioning whether or not you'll regret that decision down the road.