radiation-induced brachial plexopathy
Comments
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Don't click on links in the post above. Reported because of links.
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Good morning, all!
Just want to encourage all of you to take the time to answer the New York University survey on post-mastectomy symptoms and RIBP. This is our chance to let the medical world know what this journey is really like, and provide the basis for further research that can give us some answers.
http://www.stepup-speakout.org (The home page has a paragraph about the survey and a link to the page.)
THANKS!
And hugs,
Binney0 -
This article includes both neoplastic brachial plexopathy and radiation induced brachial plexopathy, but the list of symptoms says it all for me!
Neoplastic Brachial Plexopathy
Updated: Jan 19, 201
Introduction
Background
Neoplastic brachial plexopathy (NBP) is an uncommon diagnosis in most physiatrists' offices, but the condition bears review as it can mimic symptoms of many common upper limb neuropathies. Approximately 10% of all peripheral nerve lesions involve some type of brachial plexus lesion. Neoplastic invasion of the brachial plexus is an uncommon, though not rare, cause of plexopathy. This article reviews the more common issues associated with physiatric treatment of patients with NBP.1
Pathophysiology
Lesions of the brachial plexus occur most often secondary to neoplasms that reach the plexus by direct extension (Pancoast syndrome) or, more commonly, by metastasis through lymphatics from the axilla. Pain in the shoulder, radiating down the limb, may be observed, as well as pain in the medial forearm and hand with lower trunk innervation (C8-T1 roots) in some series. The most common pathophysiology revealed on electrodiagnostic tests is axonal loss. Peripheral pain mechanisms may include lowering of the nociceptor threshold by prostaglandins and other noxious chemical substances and persistent nociceptor stimulation. Compression or infiltration of the nerves of the plexus by a tumor may produce neuralgia and inflammation.
Frequency
United States
Approximately 14% of all upper limb neurologic lesions are due to brachial plexopathy of all types. Neoplastic plexopathies were responsible for 1.4 and 14.5% of symptoms in 2 series of patients who had undergone surgery. Insufficient data have been published to determine the frequency of NBP, but symptomatic NBP has been estimated to occur in 4% of patients with lung cancer and 2% of patients with breast cancer.
International
The international incidence of NBP is unknown.
Mortality/Morbidity
Primary neoplasms of the brachial plexus generally are benign, while secondary neoplasms are malignant. Most secondary tumors are metastatic, contributing to higher mortality.2
Sex
Solitary neoplastic lesions of the brachial plexus are more common in females. Neurofibromas demonstrate a male-to-female ratio of 1:1.
Age
Incidence of metastatic neoplasm of the brachial plexus increases with age; thus, the condition is more common in elderly patients.
Clinical
History
Pain is the most common presenting symptom of NBP (seen in 89% of the Kori series).3 In one series, 17 of 55 patients presented with brachial plexopathy as the initial manifestation of cancer. Patients with NBP may present with shoulder pain and paresthesias with radiation of pain into the medial forearm and/or hand. Symptoms often are related to breast or lung metastases or lymphoma in a generalized plexus involvement, sometimes with a lower trunk predominance. Symptoms may be diffuse but more often involve the C8-T1 dermatomes and myotomes (mimicking ulnar neuropathy or C8 or T1 radiculopathy).
The Pancoast syndrome (superior pulmonary sulcus tumor) usually is caused by carcinoma at the lung apex, encroaching on the lower trunk of the brachial plexus. Patients with this condition frequently are males with a history of cigarette smoking. For primary brachial plexus tumors, usually from the nerve sheath (neurofibromas and schwannomas), slightly higher incidence is noted in the upper brachial plexus; thus, symptoms appear in the C5-C6 dermatomes and myotomes (mimicking C5 or C6 radiculopathy or possibly carpal tunnel syndrome).
Radiation-induced brachial plexopathy (RBP) is another relevant topic since it can be confused with NBP. As treatment may be different for the two conditions, differentiation between RBP and NBP is important, although it may be difficult. As many as 73% of patients who have undergone radiotherapy at more than 60 Gy develop plexopathy. Overall incidence of brachial plexopathy is approximately 1.8% of treated patients; however, several factors play a role in development of the condition, including dose (incidence is higher with doses more than 50 Gy), volume irradiated, and treatment technique, as well as whether chemotherapy is administered concurrently. Emami reports 5% incidence of NBP at 5 years when the patient has been treated at doses of 60 Gy to the entire plexus; however, up to one third of patients with RBP find that the deterioration may stop after several years.
- Some historical findings suggestive of NBP include the following:
- Onset of limb pain less than 6 months following radiation
- Rapid progression
- Horner syndrome (in two thirds of patients with Pancoast syndrome)
- Severe pain predominant
- Other metastases
- Focal mass or neoplasm on biopsy
- The most reliable feature of NBP (in 80% of patients) is early severe unrelenting pain. Fewer than 20% of RBP patients present with pain, and approximately 33% have minimal or no pain throughout the course of the disease. Two thirds of patients with RBP show severe neurologic deficit progression over several years, while in one third of patients, progression spontaneously ceases after 1-3 years.4 More common findings in RBP include the following:
- Slowly progressive course, duration greater than 4 years
- Predominant paresthesias
- Median sensory amplitude decreased early
- Involvement of the upper trunk or C5-C6 portions of the plexus
- Conduction block on supraclavicular stimulation
- Myokymia on needle examination
Physical
Examination findings depend on the specific parts of the plexus involved. As can be inferred from the information above, weakness in the hand intrinsics and sensory loss in the C8 and/or T1 dermatomes may be present with the most common lower trunk involvement. For more widespread involvement, motor and sensory loss may be present throughout the limb.
Less common primary neoplasms may occur and present as limb pain and/or a tender mass, causing radiating paresthesias upon palpation. Sensory and motor deficits may be found corresponding to the tumor's location in the plexus; however, weakness and sensory changes in the lower trunk distribution of patients with Pancoast syndrome are reported in approximately one third of cases.
Causes
The most common causes of NBP are metastatic lesions from breast or lung cancer, and the clinician also should be aware of possible concurrent cervical spine metastases.
Kamenova et al examined the cause of BP in 28 breast cancer patients suffering from homolateral arm pain and neurologic deficits.5 In 26 patients, BP arose at the same time that supraclavicular, axillary, or chest wall metastases developed. The metastases resulted either from recurrent cancer (21 patients; found a median of 34 months after primary breast cancer treatment) or from progressing, inoperable primary tumors and nodes (5 patients). Nineteen patients developed arm edema at the same time that locoregional metastases appeared.
Primary NBP is less common than secondary metastatic lesions and usually is benign. Neural sheath tumors comprise 67-85% of primary NBP, and benign neurofibromas represent 66% of primary NBP tumors. Most neurofibromas are solitary, fusiform, and supraclavicular, and they are more common in females than males (3:1 in one series). A smaller number of plexus neurofibromas (37-42%) are associated with Von Recklinghausen disease. They can arise or extend intraspinally, and their nerve fibers often are nonfunctional.Benign schwannomas (eg, neurinomas, neurilemomas) are the second most common type of sheath tumors, comprising about 20%. Approximately 15% of neural sheath tumors are malignant (eg, neurogenic sarcomas, fibrosarcomas). Many of these malignant tumors occur in tumors that initially are benign and undergo malignant transformation, as occurs often in Von Recklinghausen disease. They may develop many years after radiation for Hodgkin disease or breast cancer. Among other types of primary neoplasms, only lymphomas metastasize to the brachial plexus with any appreciable frequency. Rarely, NBP may occur as a paraneoplastic syndrome in patients with Hodgkin lymphoma, encephalomyelitis, and small cell carcinoma of the lung.
0 - Some historical findings suggestive of NBP include the following:
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Good Morning!! It has been a awhile since I last posted. Mom has been battling cellulitis and we are trying to keep her from having to be admitted into the hospital again. Then to top everything off it looks as though the cancer may have returned. We were expecting it,..but not this soon. We are waiting for an appointment with oncologist, and hope to get her in treatment soon. Of course with the cellulitis her arm is huge...although I would bet (and I am not a betting woman) that the cancer is also responsible for us not being able to control the lymphedema.
I have been able to pop in from time to time and have seen little action here. I do pray that this is because you are all feeling your best. Watts, you have been in my thoughts and prayers, I pray you have your cancer in control.
Ladies there is something we have not discussed here, and I need your thoughts and input. How many of you battle cellulitis and what are you doing for it? Has it become chronic?
Wishing to leave you all with a smile. My 10 year old is cat sitting. He would love to have a cat himself. One of his jobs to to clean the litter box. Well, the smell was not what he liked, so he looked for something to cover his nose. All he could find was a pair of his underwear...they were clean. So he put them on his head and looked out of the leg holes!!! He comes up to me and asks if I think it would work!! What a hoot. My Dad supplied him with some dust masks...LOL but I think the underwear was funnier!
Sending blessings for a peaceful day to you all
Terri
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Terri, my computer has been down since last week, and I'm just now finding this. I'm really stricken about the suspected cancer return. Is the cellulitis under control now? That is so stupid painful! I'm praying that onc appointment will be prompt and the treatment quickly effective. Please let us know what the next steps will be. (I wouldn't bet on the cancer being the swelling culprit, because cellulitis can do that all by itself -- ouch!) And no LE treatment possible until the infection is under control, either -- grrrrrrr!
Connie's grandson is a wonderful gift. Better hug him for all of us -- quick, before he gets any older and won't allow it! Bet even the cat was amazed about the, uh, ingenious haz-mat outfit! And please give Connie a very gentle hug from me. Tell her all of you are in my family's prayers.
Be well, all of you!
Bonnie0 -
Binney, and all, Oncology appointment for Mom Thursday afternoon. The cellulitis appears to be under control again, but the swelling is not. We are concerned about Chemo and the return of the cellulitis. So that is first on our list with the Oncologist. He had told us that there was a possibility that the cancer would return and that it would be considered chronic. She is having some blue days with it's return...The on going battle with the cellulitis has been difficult and we are not looking forward to more with the chemo. Tough questions to be asked and answered. I will keep you all informed.
On a lighter note...Binney, you hit the nail on the head about Ben. He is one of 7 grandchildren, but the only one that mom was able to be there for his birth. He was born the night before one of her early chemo treatments. She refused to leave until he arrived..and since then she has called him her ray of sunshine.
Considered him and Connie hugged.Praying you are all doing well.
Terri
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Terri, has Connie seen an Infectious Disease specialist to help with controlling the repeated cellulitis? On-going low-dose antibiotics are an option that have helped many women with repeat cellulitis. Knowing it was under control might make the chemo more bearable.
Prayers for Thursday, and for some moments of joy in the midst of these blue days,
Binney0 -
Terri, I am also disheartened to hear about your mom. She is such a plucky lady, she deserves a break. Binney has a good idea there about seeing an infectious disease specialist (Binney always has good ideas). Just what you need, another "ist" to add to your already large list. And I love your cat story! Keep trying different outfits to keep Connie laughing.
I have no idea what just happened to my print. I hit something on the lower left side with my pinky, and I have no idea what to do. Sorry, everybody........get your reading glasses out. Any suggestion will be very appreciated.
Lioness, I want to thank you for that whole thing you quoted about the NBP and RIBP. Wonderful, if a little too much medicalese. I love the statistics, but I wish he had something to say about treatment. Sigh. How are you doing? Haven't seen you here for a long time too.
Okay, I better call this a day before I manage to delete this whole thing. Barbara-
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Barabara,
I am still waiting to hear back from a group of doctors from U of M who specialize in brachial plexopathy. They have a Doctor yang who specializes in Radiation induced nrachial plexopathy. Thanks for the reminder. I'm calling them now!.
Takr care all of you!
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Thank you Barbara...LOL I could read the post!! I am at the point of waiting for my new glasses. So your extra large print was a gift!! The Bold worked well too!
Mom sends her best wishes to you all. She went to see the Oncologist who confirmed what we suspected. We talked about the possibility of the cellulitis flaring up..(hadn't thought of another "ist" At this rate, we will have had an appointment with every "ist" known to man!! Is there a Guinness World Record for that?) Maintenance antibiotics is a possibility that was discussed, although the oncologist seems to think that cellulitis always has a fever with it.
woops, experience has shown us that Mom is not textbook!! LOL still he is good with taking care of the cancer. She had her first treatment on Friday. It will be repeated again on this friday, and the 25th. Then she will have a week off before she begins again. We were expecting the cancer to return, although not this fast. The Doc said that he was able to give her a low dose, and have it work. It is possible that it was not all gone, from the first round. Unfortunately, they don't show on any scan!! Still, we are smiling and were greeted in the infusion room with warm hugs... and so we begin a new journey.Lioness, do keep us updated on your success with Dr Yang. Wondering w
hat is the thread that ties you all together?
I have to figure out how to post a picture here of some art work that I created while Mom was going through chemo earlier this year. Our Infusion room has a walled garden with a water fountain. Although it was the dead of winter, I envisioned a garden in bloom, and created a scene with paper pieces. In the middle of it is a tiny angel dancing, and the quote " leave room in your garden for angels to dance." I think you all would enjoy seeing it...
Sending you hugs!
Terri
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Sigh, Mom is back in the hospital. Acute cellulitis and pneumonia. Trust me the cellulitis this time is not "cute" it is the worst I have seen, her entire RIBC arm is inflamed as well as part of her trunk. The arm is at least three times normal, and hot hot hot!! As of this morning she said that the hand has started to shrink. So that is a good sign. Her oncologist is changing chemo. He told her that her count was dropping too fast. I hope that each of you are doing well. Sending you good wishes and gentle hugs
Terri
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Oh, Terri, I feel so bad for her! Sounds like the antibiotics are starting to work, though, so she should be experiencing some relief soon. Yikes, that chemo must be something over the top!
Praying this is just a guided re-direction and that the change of chemo will be exactly the right move toward real healing. Do please give her my love. No hugs this time -- bet she doesn't want anybody TOUCHING her! Sure wish we were closer.Hugs to you, though -- and thanks for all you do. Really. Means so much.
Just this minute realized you'd managed to post the picture -- how completely delightful! And the dancing angel -- yes, it's all about leaving room in the garden for such wonders! May Connie's garden be visited by angels around the clock!
Binney0 -
My brachial plexus nerve was recently zapped during my last week of radiation ~ ow! Taking Neurontin prescribed by neurologist and doing a couple of exercises suggested by a physical therapist. I'd been led to believe I'm one in a million; seems not, by the looks of this topic! Thanks for sharing your experiences.
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Hello, Grayt, and welcome!
Sorry for the reasons that bring you here, but glad you found us. And I trust you'll find the support and information you're looking for here. Please keep us posted with your progress.
Terri, how's Connie doing? Time for an update, please. And everyone else -- haven't heard from many in a very long time. Please do let us know how you're doing!
Gentle hugs,
Binney0 -
I have radiation-induced brachial plexopathy, and it is not fun. I just refuse to think about it.. maybe yours is worse but after the radiation I had numbness, tingling, pain, swelling - you name it. I mentioned it several time to the doctor but just got a shrug. After losing my hair because of chemo - this is insignificant to me. The whole breast cancer experience was a nightmare and it made me angry. I refuse to give in to it...I'm probably in denial but I will not justify the cancer's existance by letting it interfere with my life...this is the first time since I was diagnosed a year ago that I'm even able to read these posts... I'm probably a little nutty, but I'm going to hopefully put this behind me and pretend it didn't happen.
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I have radiation-induced brachial plexopathy, and it is not fun. I just refuse to think about it.. maybe yours is worse but after the radiation I had numbness, tingling, pain, swelling - you name it. I mentioned it several time to the doctor but just got a shrug. After losing my hair because of chemo - this is insignificant to me. The whole breast cancer experience was a nightmare and it made me angry. I refuse to give in to it...I'm probably in denial but I will not justify the cancer's existance by letting it interfere with my life...this is the first time since I was diagnosed a year ago that I'm even able to read these posts... I'm probably a little nutty, but I'm going to hopefully put this behind me and pretend it didn't happen.
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Hi, Alison,
Glad you found us because we are few in number, but mighty. We get our strength and a lot of
good information from each other. (My daughter is a one"l" Alison too; what smart mommies you both have.) I don't think you sound nutty at all; I think you've had a lot of crap on your plate in just one year, and I'm impressed that you don't sound a whole lot crazier. You've had the whole bit, diagnosis, chemo, lost hair, and radiation, and to add injury to injury, you wind up with RIBP. Now, to add insult to all that injury, you get a shrug from your doctor. Nice going, Doc. I bet he never heard of it, or if he did, he'll swear it wasn't anything he did to cause it. It must have been your own defective immune system. I've heard them all.
My RIBP took 25 years to show up, but it was a very slow process. I understand the numbness and the tingling all too well, but the swelling you mention is something that concerns me, and it might be lymphedema. The sooner you get that checked out, the better. Do you have a physical therapist? Do you like her? Does she seem to have a brain or does she shrug? You may need to see a physiatrist for a definite diagnosis. They usually deal with sports related injuries, but they should be able to handle that for you.
I am sorry that the entire breast cancer thing was such a terrible experience. I mean, none of us had a good time with it, but I can tell that you are still very angry. Don't fight that. You sound strong and spunky to me, so go kick some cans or throw some stuff (you don't care about) around, and yell (in an empty house). It's a stopgap measure but it helps. Cancer doesn't have to interfere with your life. You just have to rein it in, get a good grip on it, and make it trail way behind you, way behind all those other things that are important to you and that make you happy. Just try to be a little patient with yourself.....yourself will thank you. You have been through a lot, and we are all here to help you. Zing us a post any time. We will all be pulling for you.
Barbara-
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Hello All! It has been a crazy summer and I feel bad that I haven't sat down to post.
First....Welcome to GrayT and Alisonbelieves. I remember the first day I found this posting. We had a store full of customers, and I ran out and touched my mother's arm and said.."I have found someone!!" I think we both cried when we realized that there was more than one. Anyway we can help you make sense of this madness..please let us know.
Second..I need to update you all on Mom. She is hanging in there. She has developed some cysts on her liver that were being checked out, and in doing so they discovered that she has pneumonia again. We think that because of the paresis of her left diaphragm (caused by RIBP) she will be susceptable to this. She had been put on a low dose antibiotic, but ended up with it anyway. On the other hand her arm is looking fantastic. I do wrap her hand and fingers then she will put on a sleeve. We are currently doing a clinical trial on some new sleeves, which are proving easy to put on a paralysed arm.
The Gemzar has curbed her appetite, and she has lost about 45 lbs. Thankfully her spirit is as fiesty as ever.
I hope that this note finds you all in controll of the pain and with a smile in your heart.
((((hugs)))) Terri
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Terri, we've missed you and Connie!
Please, oh, please tell us more about the sleeve you're trying out. It sounds like it's working out wonderfully! Is it a day-type sleeve or one with foam "stuffing", or what? What good news that would be if there was something to use easily!
Some of us would be happy for the weight loss, and I hope Connie isn't suffering from it. The both of you sound fiesty in all the very best ways -- brava!!
Continuing to pray for you both, and your family as well.
Hugs,
Binney0 -
Binney, Unfortunatly I can't say too much about the sleeves as yet. There are some issues with the design, and they are still working on them. We are excited though and I promise as soon as they are finished I will let you all know.
I hear you about the weight loss...Mom is doing ok with it, and the Dr's don't seem concerned. She finally had to buy some new pants, because she was getting to be a droopy drawers. We are going to talk to the oncologist about the nauseous feeling she is getting 2-3 days after the chemo. It seems to be getting worse, and she is unable to eat much for those couple of days.
I can't believe time has been flying by. I don't seem to get a chance to hop on the computer and post as often as I had in the past. I have missed you all, but you are never far from my thoughts and prayers.
The store is calling, I need to prepare it for opening. gentle hugs to you all.
Terri
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Terri, your posts always take my breath away. The two of you are my heroes, and I hope I "grow up" to be like you. Your love and joy as a family absolutely melts me. Wish to goodness we were closer and I could drop by for some group hugs. Please know you're in my thoughts and prayers.
There's a 5-day NLN conference for lymphedema professionals going on in Orlando, starting today, and two of our gals from the boards here are attending, remembering to pick all the brains they can about RIBP. I'd give anything to jog loose some decent research and treatment options for this.
Big hugs!
Binney0 -
Binney, We are sitting in the infusion room. Mom is hooked up to a different chemo. The Gemzar was dropping her WBC too much and too fast even with the reduced dose. So the oncologist decided it was time to switch drugs. He also gave her a perscription for an anti nausea meds and that is working for her. We think she may have gained a pound this week!! LOL she said that this is the first time in her life that she is trying to gain.
I have just read your last post to Mom, and she says "please send Binney my love and hugs."
oh BTW Mom's LE Therapist is at the NLN Conference...her name is Jeanne Nourse...look out for her, she would love to touch base with other RIBP people.
...the last of the fluid is finishing up..so it is time to go.
hugs and prayers to all..
Terri
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Connie and Terri, I just sent an email to "our gals" in Orlando, so I'm hoping they'll stay alert for her -- that would be so neat if they could all meet up. Probably a very slim chance, but I'll just pray about it.
Sure am looking forward to the new chemo routine being both more effective and more doable. Keep us posted, please!
Hugs and prayers, with joy,
Binney0 -
Have you heard of Feldenkrais? It is helping me lots It is neuro-skeletal education, and I have been working with Janice Vincent, owner of MindMoves in Bellevue WA., twice a week, since June. It is helping me integrate my RIBP right side with the rest of my body. My shoulders are just about level now, and I am balancing much better over my feet. This is helping me very much, and I am learning to relax my shoulder and arm and to link these movements with my pelvis and feet...very hard to explain. But Feldenkrais is helping me where chiropractic, massage, PT were not. Look around your community for a Feldenkrais practicioner and check this out for yourselves.0
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Well, I guess I am a new member of the club. After a very thorough physical exam, BP Specialist said I do have Radiation Induced BP. Didn't show on EMG because muscle atrophy not "significant" enough yet. Having a hard time. Difficult to talk about. I'll get there though. Trying to swallow it.
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Hi. Lioness,
I can certainly identify with your despair, hearing that definite RIBP diagnosis. I couldn't bring myself to accept the idea, let alone the fact. And it took me a long time to find this group. Up until then I felt extremely isolated and very depressed. My neurologist insisted I take an anti-depressant, assuring me that anyone who has lost or is losing the use of a limb is depressed, so I shouldn't feel there is something wrong with me. It was small comfort, but at least it did not add to my depression.
I didn't know there were specialists in RIBP. All I have is a neurologist and a radiation oncologist, and they have no idea what I should do. Neither of them ever suggested exercise. Does any of that ease your symptoms?
I am sorry that I cannot offer you any suggestions, only my sincere empathy, since I know exactly where you are. Just try to make life as easy as you can for yourself, and don't do anything if it is not essential. And of course, take it one day at a time, don't try to project into the future. We only have today. I wish you well, and keep in touch. Venting is good.
Barbara-
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Ah, Doe! You are a strong and smart woman, and you will prevail. I love BarbaraEllen's reminder to live this one day at a time. One day is quite enough to manage well!
Forget the permitted accomodations -- make your own. There are one-hand keyboards and it only takes a couple of months to get back up to your two-handed speed when you're learning to use one. Frustrating -- yes. But not as frustrating as stagnating. The StepUp-SpeakOut RIBP page has loads of other ideas from the amazing women here about day-to-day coping. Look at them, welcome a few of them into your life now, and plan to add others as you move ahead.
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#coping%20tips0Ronimom, I'm in awe of your discovery of Feldenkrais. I've researched it and I'm excited about it. I have a few questions for you, if you wouldn't mind sharing. How expensive is it? Does your insurance cover it? How long does it take before you start to see results in your sense of body integration?
Doe, I just want to urge you to look into the Feldenkrais, because it sounds like something that if you start it early you may be way ahead in coping with this. It's active but gentle, and it's smart (it's all about science and engineering and movement mechanics). This is a way to move toward taking control of your life without drugs or surgery. Do consider looking into it, and if you do, let us know what you think.
http://www.feldenkrais.com/practitioners/find/Love your avatar, Doe -- you look confident, even if you don't feel that way. I don't want to seem callous about all you're facing with your home and work situations, but just want to encourage you to take the steps you need to take today, and let the future take care of itself.
Tell us how we can help!
Hugs and prayers,
Binney0 -
Just wanted to post that Feldenkreis helped my sister tremendously when she herniated a disc and had surgery and was dragging her leg behind her.
It makes tremendous sense, and my sister started the formal training--did not finish it, but swears by it.
I'm glad it's helping you ronimom, it sure helped my sister with a neurologic problem.
Kira
I was one of the women at the NLN--and I didn't find out anything more about RIBP, but I'll be at Dana Farber for a conference in a few weeks, and it was discussed last year. I'll look at my notes from the previous conference, and see if there's anything of value in it.
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I have never been so depressed in all my life. I have been doing one day at a time for so long, I find no refuge in it anymore. It feels instead like being locked into a prison of 'just now'. What about our tomorrows? Have they been stolen from us? What about the truth of what treatment can do; the truth we were never told to expect? What about that tomorrow? Didn't we have the right to make an informed decision? When I look back at my treatment decisions, it feels like my doctors were like salesmen. Like I was being asked to make a decision on buying a new car! I bought a new car all right and it's a lemon! And please just allow me to vent without shaming me for not being grateful I am alive! Don't do to me what doctors do. I am not grateful to be alive. Not today! Today I wish I would have done more research and trust me I did a lot! Today I wish I never would have chosen radiation and just taken my chances. Today I wish I never would have chosen chemo and saved my brain from strokes. I know I can't go back and change my mind. But OH MY GOD how I crave to be able to.
When I asked Dr Yang what I could do to help reverse this? Her answer? "Nothing. There is only time!" Please bear in mind, she is a surgeon. She had nothing to lose in telling me the truth. She explained to me that my plexopathy is "so diffuse". Let's face it! My brachial plexus got fried! Microwaved! How do you reverse that? I kept complaining to my rad onc from day one that my jaw, neck and shoulder hurt. I got that canned response, "it's because you have to stay in the same position on the table with your arm up." Really? Then how come people sleeping in that same position every night don't end up in horrible pain? Who makes this stuff up? Do they think we are idiots? I just got ignored. I burned straight through to my back. They just kept radiating me and giving me pain meds. It doesn't take a rocket scientist to realize that if my back was just as burned as my front that maybe I wasn't a candidate for 33 days of rads! That any one with any amount of common sense could only conclude that everything between that sandwich was fried too!
So if I'm one of the 2% for this, then what else lies in store? Radiation induced sarcoma? I am angry as you can see. I have always been so careful with my body and medical decisions. But let's face it, when you get the big C diagnosis, caution is no where to be found and you are so vulnerable and you will do anything to be free of it!
I feel like a fool. I feel like I betrayed myself, because fear had the upper hand. I, Doe, the cautious careful person I normally am was no where to be found. She was saturated in terror.
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Please pay close attention to "Section VII, Radiation beginning pg.61:
State of the Evidence:
http://www.breastcancerfund.org/assets/pdfs/publications/state-of-the-evidence-2010.pdf
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