shoulder tendonitis- rad position, hurts!

poetjanet · October 2009

I had hoped to do balloon radiation but it didn't work out. I had a catscan on Wed. and initial markings were done. I did not realize until after they had done the catscan that they painful position that they had me in: arms above my head with one hand clasping the other wrist was how I was going to need to be positoned during the whole six weeks of treatment. They told me that the next time I come I will need to stay in that position for fourty minutes, and to take pain medicine before I come so that I can stay that way the whole time.

I wish I had known that this position was not just for the purpose of doing the catscan, but that it was my "permanant" treatment position. I also did not know how much pain I would be in later that day and for the last three days since.

Has anybody else out there been able to not have to have your arms all the way up over your head, with one hand clasping the other wrist? I would like to ask them if I can just have my arms out to the side, and bent at the elbow, so that it doesn't have to be so aggravating to my tendonitis. I had a frozen sholder that just thawed over the last few months. I really don't want to wind up with two frozen sholders, or perhaps torn rotator cuffs, if it is not absolutely necessary for my arms to be way up over my head. They may tell me they would have to do another cat scan if I changed my arm position like that. Frankly, I don't care.

I also have ebstien barr (chronic fatigue). I take lots of vitamins and antioxidants. They told me , no vitamin C or antioxidants during radiation.

Any feedback be appreciated. Thank you!

LRM216 · October 2009

So sorry you are having to go through this with pain. I too had the ct scan and markings and tattos done, but didn't have to stay in that position for longer than maybe 15 minutes! Yes, I have to have both my arms over my head too during the rads (just completed my first week) and did develop pain around my sentinal node scar and that whole area. Radiologist told me it's the scar tissue stretching and it was normal. Great, still doesn't help with the pain by knowing that. We will do it - march on warrior - this too shall pass. Let's just hope we don't burn - that's my fear.

Hugs,

Linda

Leah_S · October 2009

I had my arm out to the side and bottom part over my head. The rad table had an arm rest for that position. The arm on the other side was down, resting at my waist.

If you have a good reason (which you do) not to have the position they seem to use regularly at your facility, speak to them about this other position.

Best of luck.

Leah

poetjanet · October 2009

I do fear the burning too, but I've seen on these forums and from a friend who went through radiation, that faithfully using 100% aloe vera gel helps alot. They tell me I can't use that until after the first week, because I just have magic marker on me now. They tell me they don't put the tatoos on until the first full week is done.

I see you were diagnosed way back in February, so I'm guessing you must have had to go through chemo first. I didn't have to do chemo as mine was not invasive. My sister was Her 2 back in 2006, but she had to have a mastectomy as her cancer was too big for a lumpectomy.

I am trying to trust the Lord, but I don't see that it's wrong to at least ask how necessary it is for the arms to be way up over the head. I did see someone else on here who was able to hold her arms out to the side. Wanted to see if anyone else got "permission" to alter the arm position.

I"m sorry about your sentinel node scar pain. I wonder if something like Aloe Vera might help that if the pain is on the outside.

Nice to have the sisterhood of fellow sufferers on here.

poetjanet · October 2009

Thank you for your post Leah. Hearing stories like yours give me hope that I maybe they will let me alter the position they want me to be in. Hope you are doing well.

Irishred · October 2009

WOW you sound just like me, I didn't know either, After the day of the cat scan , which wasn't bad, the next three (and first three) rad treatments were extremely uncomfortable. At the end of the 3rd day, I was on the floor in so much pain I couldn't stand it. I had major nerve and muscle spasms. I had to stay off rads for two weeks. and that was July 2009 I discussed this position, on a steel table, with a sheet under you and your arms on metal stirrups, with the techs and said this aint gonna work anymore I want my left arm straight out and I want cushion under it. Once the rad doc said ok, I didnt have any more trouble , BUT Its now almost November, I still have NO motor control in my left arm and feel like its pretty useless most of the time, I cant lift with it, I can hardly even tpe on the computer anymore. I am going to my regular pcp next week, and see if anything can be done, I have done all the exercises the rad doc said to do, to no avail. I feel for you and let me know if you find a solution, cause so far I havent.

Irishred · October 2009

The burning under my arm, also kept me off rads for two more weeks. PLEASE tell them you want your position changed, my techs and dr were very agreeable. I didn't do chemo, even tho I was invasive, and had lumpectomy and 8 nodes removed ( 2 were bad) I had a cat scan and there didn't seem to be any spreading. Who knows? things can change on a daily basis, but as I am only 58 I refused to lay in bed and puke, I intend to have as much fun as I can. If it comes back later, I will deal with it then. GOOD LUCK, on changing your position, but you must INSIST on it.

poetjanet · October 2009

Dear Irishred, I am SO sorry for all the pain you have endured! Did you put any kind of cream or Aloe Vera Gel under your arm, if the "burning" was a radiation burn? When I had a frozen shoulder on my left side, I babied it as much as possible, and then when I my back went out back in May I went to a chiropractor who uses "The Activator Method" solely in his treatment.

It looks like a pen that he punches into various places where the source of the pain is coming from. He increased my range of motion in that left arm, and also got rid of a muscle spasm I was having in my left finger, and has also helped strenthen my back. He even helped a "kegle" muscle that was in spasm. I don't know if you could find a chiropractor in your area that uses "only" the activator method in your area, but if so, perhaps you may be able to get some relief.

After I get done with the radiation treatments, I was going to try a natural supplement that I found out about on the "natural girls forum" It is called Myomin. It blocks the bad estrogen, and not the good estrogen. They have other products called angiostop, and revivin, if hormones are not the cancer problem. I was scared to death about having to take tamoxifin or arimedex, so I was glad to see someone mentioning an alternative. These things are made by a company called, "Chi Enterprises." I was only able to see case histories about how it was helping people from the 'UK" website. I can't try any of this until I am done with radiation, but I am hopeful that maybe it might prevent a reoccurance.

Again, I am so sorry for how much pain you have endured. I'm glad you finally spoke up, and they listened to you. Hopefully, when I mention my concerns they will be willing to alter my rad position.

poetjanet · October 2009

Talked to nurse in radiologist's office, explained all my concerns about how the rad position aggravates my tendonitis in both shoulders. Radiologist won't budge an inch. Says I need to be in that exact position to make sure they are hitting the same spot. If I put my arm down, it may not be in the exact same position from one time to the next, and they need to have exactness to avoid hitting my heart or lungs. This is a tamography machine. So maybe that makes a difference in having some alterations allowed. All I know is my shoulders are going to be hurting real bad, and I wish I could just go and run away somewhere! I think I may ask them if I could wait until Friday to start so that I would have the weekend to recoop from the fourty minute stint in that painful position.

Bren-2007 · October 2009

Hi Poet,

I had the same problem. The radiology center constructed a type of model/form I had to put my arm in above my head. I was in such pain due to lumpectomy and sentinel node removal. The techs had to lift my arm above my head and put it in that thing before tx started, and then lift my arm down for me. Once you get set up, the actual tx time for rads is about a minute. I had two fields done and timed them. About a minute a piece. It took weeks for me to regain enough motion to lift my arm myself. After about 7 weeks, I could put my arm up there .. just in time for the 8 boosts!

I was Stage I with a 7 mm tumor, no nodes and 6 mm margins all round. Truthfully, if I had to do it again, I wouldn't do rads at all. JMO. I continue to have pain in that side after 2 years, as well as calcific tendonitis in that shoulder.

I think taking the pain meds before tx is a good idea. I wish my doc had suggested that AND provided the meds.

I wish you well and will be thinking about you.

Bren

poetjanet · October 2009

Hi Bren,

I'm so sorry to hear how much you have suffered! I didn't have any sentinel nodes removed, so I don't know what that pain feels like. I wish you could get some help somehow for your pain. When I hear of people on this site still suffering after a year or more, it really gives me pause about going through this. Frankly, I am still in so much pain from what was done last Wednesday, that I just do not feel I can get to the place of being willing to have increasing and ongoing pain in both of my shoulders.

I had a stage 0 DCIS cancer, but it was grade 3. I had a lumpectomy with only a one millimeter clear margin even though 5 X 4 X 2 centimeters were removed, so I had a re excision with another 6 X 4 X 1 centimeters removed. For some reason they don't seem to be able to tell me what my clear margin is now, but I sure would like to just try to treat what ever possible stray unknowable cells they tell me might exist with natural supplements ect. and pray that I could keep it at bay that way, so that I don't have to loose the use of both of my shoulders. I am willing to accept the loss of the one shoulder on the cancer side, but I just don't see why they couldn't manage to create "reproducibility" with my right arm on the "non cancerous side" by having it in some other position other that above my head, holding the wrist from my left arm. I mean why couldn't they draw an outline of my body on the right side that I could replicate each time I lay on the machine with that arm in a less painful position? Wishful thinking I guess. I'm praying that they might be willing to consider other options, but doesn't look likely. What I would like most of all is to have some kind of clear direction from God that I don't have to do any radiation period.

I do hope you can find some relief soon. Thank you for sharing your story, Bren.

Janet

bluedasher · October 2009

Janet, I understand how hard it can be. I've had a frozen shoulder in the past and at the time my BC was diagnosed I was having problems with bursitis in the other shoulder. Surgery and chemo interfered with taking NSAIDs for it and pain pills like Vicodin didn't help for me. It was still bothering me by the time I got to rads and I took Ibuprophen but that combined with the Clodronate I was taking on the bisphosphonate trial was too hard on my kidneys so I had to stop taking that or any other NSAIDs. My PCP gave me a cortisone shot in the shoulder joint and it has been better since then.

I think that the rad onc should try to arrange for some other postion, but if he can't or won't, could something be done by your regular doc to help address the shoulder inflammation to make the postion less painful and hard on your shoulders? Can you take anti-inflammatory drugs? What about a cortisone shot - possibly one for each shoulder.

Blundin2005 · October 2009

Hi poetjanet,

I had a similar problem. Very painful and made it impossible to raise my arm above my head after surgery. An MRI confirmed some damage. My rads were delayed five days while a physical therapist worked on my shoulder with heat and gentle stretches. The oncologist can advise the techniques approved. I can't remember which one, but there was a therapy that was not permitted because it accelerated the cells movement which is not in our best interest as cancer patients. The PT knew this and the onc confirmed it. Sorry I can't remember the therapy.

After PT for five days, I was then able to lift and position my arm over my head for the rads. The shoulder problem didn't resolve for a few months, but eventually all was well.

Hope this suggestion helps.

Best wishes to you and hang in there.

Marilyn

Bren-2007 · October 2009

Hi Janet,

Great suggestion from Blundin ... some PT before treatment sounds like a good idea.

I'm not sure the techs would be able to draw an outline of your body for you to stay in on the table. The table is VERY narrow. The radiation machine rotates above you to the left and right. I don't know how many sides you are having radiated .. I had two positions. Your arm has to be way up high over your head to get one of the fields radiated.

It's been a little over two years since my tx ended and I'm digging, shoveling, mowing and blowing leaves, mowing my fields and mulching my garden again. I'm just grateful it was my left nondominant side.

I really feel so badly for you. I understand, and really, the best part of it is that the whole process goes by quickly. I work from home as a transcriptionist, so I could work at my own pace and the hospital is only a few miles away. Make sure you rest a lot, as with chronic fatigue, you might experience some extra fatigue from the tx. I craved protein and red meat!

Keeping you in my thoughts,

Bren

poetjanet · October 2009

Hello Dear Ladies. I was glad to hear how much you are able to do now Bren. That was very encouraging to me to hear. I'm sorry Marilyn to hear about your painful experience. I'm glad the physical therapy you had was helpful to you. I have a chiropractor that I think may help me; and I am keeping the possibility of a cortizone shot in mind. I have some Darvocet from surgey left and can probably get more of that from one of my doctors. Extra Strength Tylenol helped some.

HOWEVER, what is going to help me most of all, is that they have agreed to let me hold my right arm down at my side! This is the non cancer side. What they are going to do is do another catscan with my right arm down, and fuse it on top of the other catscan. That will be tomorrow morning, Thursday, 10/29. ALSO, when I come back on Monday, they will only do the Xrays and wait until Tuesday to do the 1st treatment, so I will not have to lay in that position with my left arm up above my head for longer than about 20 mnutes at a time!

This is a complete turn around from what we were hearing on Monday when I called, and on Tuesday morning, when my husband of his own accord wanted to go by the radiologist's office to ask them about the possibility of making some changes. He got the same response I did.

I believe that it is the prayers of my family and friends that made the difference; and I am so very thankful to the Lord, that I do not have to have both of my shoulders be in so much pain. I had told myself that I was willing to go through with it anyway, but so glad that I only have to hold one arm above my head.

Reading all of your posts helped me as well to see that there could be some helps along the way, and that what ever I might go through, I should get better in time. I am very thankful for you ladies who have long since finished your treatments, yet you come on to these boards to give hope and encouragement to those of us who strugglng with each step in this breastcancer diagnosis, surgery, and treatment. You are a great blessing! And for other newbies like me, and Linda, I appreciate you sharing your current concerns so we can all get through this together!

poetjanet · October 2009

Hi all, Well, it turns out that my new catscan with non cancer side arm down is not as simple a change as I thought. If the new catscan after examination does not look like it would avoid my heart and lungs like the 1st cat scan shows it would, it understandably is out. If it does look like it could work out, a whole new planning session could be required which could cost an additional $4000.00, which would be out of pocket expenses. The only way, unless by a divine intervention that insurance would pay for it, is if upon appeal, I had some doctor that agreed that this new position was warranted to keep at least one of my shoulders from incurring damage. They will call me sometime inbetween Friday and Monday to tell me if the new catscan will even work out, or if it does, and whether a new planning session is needed. I'll be caught between a rock and a hard place if the new catscan is "a go" but not without $4000.00 more. Seems like to much to ask my husband to pay that much extra out of pocket.

shoulder tendonitis- rad position, hurts!

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