RADIATION AND CRPS/RSD

suesweet · May 2010

Has anyone had breast radiation, either partial or total, who also had CRPS/RSD? (These are chronic pain conditions). If so, could you tell me what happened to you during and after the radiation? Did you have radiation to the chest wall, the ribs, the axilla?

Any and all information you can give me would be appreciated.

Thank you.

kathyb64 · May 2010

I have RSD and just finishing chemo (breast cancer) - NOT yet in radiation. I may opt to pass by the radiation, as the taxotere in chemo has been like throwing bacon on a grease fire as to my RSD. The radiation therapy can cause the loss of cells and bone marrow boosters needed. I had a really bad reaction to Neulasta marrow booster (ER twice in one day). No way I'm am going through that again. I've had three rounds thus far of chemo and it has heightened the RSD. I have three weeks between infusions, so far my cells reproducing on thier own (little help from a steriod - but I could not take that daily either Im diabetic) it is an extremely painful process. Radiation is everyday - no time span to reproduce on my own. No solutions thus far from oncology.

I've searched high and low for info about Cancer treatment for people with RSD - nadda. You are only the third person I've run into on forums...I think we are lab rats *smile*

suesweet · June 2010

Thank you for your response.

I found out about the SAVI partial breast radiation device. It is placed in the surgical site and it can give individualized radiation doses throughout the span of the device. It can be placed after surgery. Radiation is given twice a day for 5 days. The dose is higher but the amount of tissue exposed is more limited. A computer decides how much radiation the tissue along the device needs. Google the device and you will find a video explaining how it works.

My DCIS is irregularly shaped and it is 5 cm x 5 cm at its largest margins. I am trying to find a center that does radioactive seed localization and SAVI radiation, if such a place exists.

I hope you recover well from your ordeal.

butterflylady2 · July 2014

Looks like this is an old topic, but I was looking everywhere for this. Doctors won't supply much info on this and I like to study before making a decision. I had DCIS high grade PR & ER + and HER2- in 2012; had 2 lumpectomies. No additional treatment. The 2nd procedure in 2012 with the stereotactic wire placement in radiology before surgery, overcompressed my breast, causing my 2nd go around with RSD (previously in R. wrist/hand after fracture-improved through time and P.T.). 45 days with severe allodynia, unable to tolerate the softest fabric; sharp jabbing pains, etc. Now 2014, Invasive Ductal Carcinoma same breast; Two June surgeries. First one lymphadenectomy (clear) with very painful nerve damage felt like needles constantly under my arm, but after 33 days, that is easing up. 2nd one in June to get clearer margins, produced a terrible flareup of RSD in breast and am waiting for improvement to be able to tolerate any clothing, etc. Recommended additional treatment is 5 day brachytherapy with catheter directed at the cavity where the tumor was and then 5 yrs of hormonal treatment. Have been very concerned about causing another RSD flareup, as I am having difficulty getting through this one. Also, concerned whether partial breast radiation will provide enough protection from rogue cells. Thanks for "listening" to my story.

Ariom · July 2014

Hi Butterflylady, and Kathyb, I just wanted to touch base with you, I don't have any advice about radiation and CPRS but wanted to say I feel for you. I had CPRS/RSD after I had hand surgery for Rheumatoid Arthritis and I was very concerned that I may have a flare from my Mx and then again when I had my Dog Ear revision. Fortunately, for me, no recurrence of the syndrome with either.

I could never find much information on CPRS and I haven't seen anything on these boards about anyone having it after Radiation, but I hope someone comes along and can give you something to go by.

I wish you both all the very best!

timetoride · November 2017

It's worth a shot here. I'm not only fighting breast cancer, I'm fighting having RSD for the rest of my life..... which is a whole different hell for some.

I'm prepping for Radiation in 4 days. I'm afraid it will bring my RSD to the point of no return. If you know what RSD is you'll know what that means. No doctors seem to know or won't say what radiation will do. I'm scared to death of living in a wheel chair and in extreme pain the rest of my life. What they do say is..... don't you want to live? Haha easy for them to say if they don't have this horrific nerve disorder and the emmense pain that comes with it the longer you have it or the possibility of lymphedema and the debilitation of ones limbs and body through a lifetime of progression with RSD.

A little about the situation.

I am newly RSD diagnosed in the last 4 months from a leg fracture 8 months ago that must have damaged my sympathetic nerve but until I was out of an immobilized state the RSD didn't present obvious symptoms. I've had very little nerve pain from the RSD and refused to believe I had it till i was attacked by nerve pain. I'm still in a “may go into remission" window with aggreasive PT that Im still engaged in throughout the bc diagnosis, making progress and recently graduating to a cane. Yay me!

Since my dx just over a month ago, I've had multiple biopsies and lumpectomy surgery, removing a 1.3cm tumor invasive (DCIS) stage 1b and 11 SLN removals with 10 sentinel and 1 intramammary LN with micrometacell involvement. Onc dx score was at 12. Radiation therapy has been advised over both prior to OncDx score.

SInce the above has taken place over a month ago, the area of removal of both the lumpectomy and LN removal is extremely painful, achy uncomfortable swollen, numb & tingly in arm pit and down back of arm and I'm getting a type of phantom pain in my opposite (good) underarm LN area as well. My inscions are 3 inches apart, 4 inches long on my r breast upper right quadrant and underarm. Any discomfort and pain now come from that general area. I'm just 5 weeks post op. Ive had 2 professionals check from afar for lymphedema signs and nope all looks fine. Well Great! But why does this feel wrong inside then? If it feels like this now, what will 21 radiation treatments do to me? Do I care at this point? I want to fight I want to live, I want to understand what is going to hurt my body, my future, my LIFE.

Can anyone answer this or know where I can get real answers. Neurologist don't talk to the oncologist, and no one knows or deals with lymphedema that can be a direct result of RSD And the nerves being effected. This is possible nerve damage from the surgery that can be effecting the RSD And perhaps making this area the newer spot of where my rsd is attckingme.

Thanks in advance Warriors!

chronicpain · November 2017

In four days I go for lumpectomy of a low grade 1.1cm invasive ductal carcinoma, plus sentinel node biopsy, and stories such as yours have me worried but I know not what else to do, the cancer has to go. . I am very afraid of worsening of my chronic pain: I had two years of extreme and severe RSD of my hand years ago after a finger surgery post-trauma, requiring multiple nerve stellate ganglion blocks and aggressive PT and meds, but it did get better. Then the RSD came back in my foot after a bad sprain, lasted a year. Both RSD areas periodically flare with stress, overuse or cold weather, but have been manageable. I have extensively researched as best I can (as doctors know little, they are too busy focussing on doing their unique set of procedures and surgeons do not understand RSD any better than primary care docs ) what if anything can be done to lower the risk of RSD flares after breast surgery, and the radiation therapy that I will likely also need (or at least which will be strongly recommended), but there is little anyone knows because the disease is uncommon and not well-studied, i.e., there are just anecdotes and there is not much evidence-based medicine. The anesthesiologist assigned to me is not doing any special preparations, does not appear to know much, or care to learn more, and he is supposedly one of the better ones (did not even want to talk to me on the phone, much less see me to discuss). I am a health professional, so I did my own research, and I found some evidence that vitamin C 1 gm/day and magnesium supplements can help lower RSD flares in relation to surgery and radiation from breast CA, and they are pretty benign so I am taking those, but mostly it is just not studied and I am not expecting miracles

On top of my RSD I have had polymyalgia rheumatica, which burned out into severe diffuse fibromyalgia after several years of assorted treatments including steroids, and had been doing ok coping and working full-time on a modified regimen with my chronic RSD, PMR, and FM pain for several years when the breast cancer was found. Here we go again, more risks for pain flares.

In your case, you need your pain controlled ASAP. If it is RSD flaring, (it can flare in other places if you ever had it before, sounds like that is happening) get a referral to a trained pain management specialist ASAP (pay out of pocket, on your credit card if your insurance plan does not cover it) and she can consider treatment with gabapentin, lyrica and other agents, even could use nerve blocks, depending on your condition, or even low dose narcotics to ease your suffering (despite the national crusade against narcotics, they are a godsend for people like us with chronic pain), otherwise there can be a positive feedback loop that worsens pain. You need to have movement to get RSD better, and people are hesitant to move involved areas if they hurt too much.

Good luck to you.

AdiAri_2018 · February 2019

I have CRPS II ,caused by nerve injury. Last year diagnosed with Invasive Breast cancer . Had 16 rounds of Chemo, Double Mastectomy. The biopsy report said I have Metastatic breast cancer due to lymph nodes found positive. Doctors now recommend Radiology Treatment for 6 weeks/5 days, total of 30 rounds. Yes, my concern same as yours, How bad the Pain will go? The chemo treatment had increased the Pain to levels 9/10. Am I going to be able to sustain the Pain? That is the question. Anyone with experience of Radio oncology treatment and Crps please post. I appreciate the assistance.

AdiAri_2018 · February 2019

I have CRPS II ,caused by nerve injury. Last year diagnosed with Invasive Breast cancer . Had 16 rounds of Chemo, Double Mastectomy. The biopsy report said I have Metastatic breast cancer due to lymph nodes found positive. Doctors now recommend Radiology Treatment for 6 weeks/5 days, total of 30 rounds. Yes, my concern same as yours, How bad the Pain will go? The chemo treatment had increased the Pain to levels 9/10. Am I going to be able to sustain the Pain? That is the question. Anyone with experience of Radio oncology treatment and Crps please post. I appreciate the assistance.

RADIATION AND CRPS/RSD

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