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Sep 10, 2016 10:06AM
HI everyone: I just joined the message boards so I could post on this thread. I have had a number of people ask me if my "issues" could be related to my breast cancer diagnosis and treatment and now I am really starting to wonder....is it the treatment or is it just me?
I've never written out my full history, but here I go:
Unfortunately I grew up with parents who didn't believe in gong to the doctor for anything other than an annual check up. That said, I had a history of joint issues and a allergies. When I was 15 I had a debilitating injury (although not due to a major traumatic event) to my lower back involving collapsed vertebrae. I suffered with terrible periods of immobility and pain for years before my lumbar spine basically fused itself.
I started getting frequent debilitating migraines.
I had small flares of psoriatic skin issues along my hairline. I had a flare of carpal tunnel syndrome that receded with physical therapy.
Here was a biggie: when I was 22 I had a sudden internal hemorrhage in my eye. I was newly married to my husband who was a military doctor in his internship year. I was worked up for everything including leukemia, diabetes, lupus, degenrative neurologic diseases, etc. The official diagnosis was "Proliferative Retinopathy of Undiagnosed Etiology". That is a fancy way of saying I had scar tissue growing in my eye that was tethered to my retina, forming due to periodic bleeding from the tugging, and they had no idea why. I underwent two vitrectomies for the purpose of removing scar tissue from the back of my eye. I received laser surgery to the periphery of my retina to prevent any further bleeding. The only answer that was ever given was that I was probably born with a "funny" vessel in my eye that bled once in a while. I now see out of that eye with 20/200 corrected vision. Sigh.
I started having issues with exercise induced asthma. It happened rarely, only during times of high heat or extreme cold.
At 31 I was diagnosed with Stage III IDC with 3 positive lymph nodes. My tumor was 5.5 cm and the largest node was 1.5 cms. I had 37 lymph nodes removed during my mastectomy. I was ER+/Pr+ with a high level of ER positivity, Her2Neu Neg.
I was treated with Adriamycin, Cytoxan,and Taxol. I had 36 rounds of radiation to my chest and underarm area.
During chemo I remained active despite horrendous bone pain from Taxol and a constant crash of my white cell count. I had to give myself daily shots of neupogen to keep me on schedule.
Good news! Chemo wiped out the psoriatic skin lesions!
As soon as that treatment ended I was put on a twice monthly infusion of Pamidronate which was being researched for the hope it would prevent bone mets. I continued being treated with an infusion of a bisphosphonate for at least ten years post diagnosis. In addition I started taking tamoxifen.
I was diagnosed with a severe case of carpal tunnel syndrome in both hands. I underwent bilateral open surgeries which were successful, but left a lot of scarring.
I finally made the decision to have reconstruction of my breast. The only choice for me considering the amount of radiation I had received was a free TRAM flap. Again, more scarring.
At the age of 35 I was diagnosed with a regional recurrence under my arm where the largest lymph node had been removed. I underwent more aggressive surgery which left a wound that took a very long time to heal. Again the cancer was Er+/Pr+. I stopped taking tamoxifen. I underwent a total hysterectomy and oopherectomy. I started taking arimidex. I was informed I had maxed the amount of radiation I could receive and chemo wasn't necessary at that time.
Around this time I experienced radical scar tissue development from all the surgeries and radiation. It was so bad that if I lifted my arm over my head I lost my pulse. I had done tons of activity, physical therapy and stretching post surgery and this developed despite it. My chest area was treated with Myofascial release which helped.
My exercise induced asthma worsened to where I was experiencing severe issues in mild weather. I underwent a full allergy screening and learned I am basically allergic to everything! Prescribed daily allergy meds and an epi pen for emergencies.
I started seeing a chiropractor for back, neck, and shoulder pain. I received regular deep tissue massage for ridiculously tight muscles.
What had been a lifelong issue with constipation and mild incontinence became even more of a problem. I underwent ridiculous tests including pelvic floor biofeedback that were not completely helpful.
I remained a very active person. I had always been a runner and continued running daily until joint pain got so bad that I couldn't walk afterwards. I switched to walking in the summer and cross country skiing in the winter which was great until I injured my hamstring insertion due to very tight hamstrings. That took two years to heal (although it never completely did). Eventually I found cycling and it was my savior. Very easy on the joints, fun, and gave me back faith in my body.
I had a very scary diagnosis of jaw necrosis (twice) due to my extended treatment with bisphosphonates. I was immediately taken off of them, and also stopped taking arimidex.
Then the bottom dropped out. I started getting terrible numbness and pain in my hands while riding. But the worse was the pain in my knees. The pain in my knees and hands kept getting incrementally worse until it was severely impacting my time on and off the bike. I was diagnosed with osteoarthitis and degenerative arthritis to a number of my joints. I went for cortisone injections as well as synthroid injections to try to lubricate the joints. Eventually these no longer worked.
Simultaneously I started seeing a rheumatologist. I had been tested repeatedly over the years for suspected Rheumatiod Arthritis or Lupus, but my bloodwork never showed it. Finally I was diagnosed with Psoriatic Arthritis. It is an auto immune arthritis very similar to rheumatoid arthritis but does not show up on blood tests. I have multiple joints affected in my fingers, toes, hands, feet, knees, ankles, neck, and most likely spine. I have developed symptoms on my toe and fingernails, but still have not had any of the skin lesions that plagued me pre chemo.
At 45 I had bilateral total knee replacements. Ouch. This was needed because of the extent of my joint deteriation coupled with the psoriatic arthritis diagnosis. I recovered from the replacements and was doing pretty well, despite tremendous scarring and fascial tightness in my legs even though I had regained my range of motion through physical therapy. But I was eventually back on my bicycle, and my knee joints felt better than they had in years.....until I took a fall and shattered my kneecap. (Yes I still had my original kneecaps...I can explain why if you're interested.) After total immobilization for months, the kneecap never healed. I was given the choice of A. Living with the pain, or B. Undergoing surgery to remove the fractured bits with the understanding that my quadriceps muscle might not function properly afterward. I opted for A. and am living with the pain. The muscular and fascial tightness worsened.
Unfortunately one year later I fractured my other kneecap. It was not due to a fall, but rather due to hyper flexion or bending of my knee. The kneecap literally just snapped in half. I attribute it to the severe tightness of my quadriceps muscle and connecting ligaments/tendons. So I spent this winter in a full leg cast, praying for the bone to heal. Thankfully it has, but the musculo skeletal tightness I am now facing is unbearable at times.
My constipation and incontinence issues have worsened. I was prescribed physical therapy which quickly diagnosed my problem as a near inability to relax my pelvic floor muscles.
I do yoga. I stretch. I go for regular massage which is two hours of torture to try to release my knotted up muscles and fascia. I just purchased a ridiculous looking contraption called a "fascia blaster" to try to keep things semi loose between treatments. It is embarrassingly marketed as a beauty aid, but really it is meant to be able to loosen up fascia all over one's body. I try to remain active, even though everything hurts. Some days I literally don't even feel like parts of my body are mine.
My psoriatic arthritis symptoms are worsening. I think I am finally ready (beyond ready, really) to start taking a biologic. I have been taking weekly methotrexate and it is not doing much for my symptoms.
I have also been diagnosed with Raynaud's syndrome in my hands and feet. This is a particularly unfortunate thing since I live in northern Minnesota.
Over the years I have undergone countless bone scans, PET scans, ultrasounds, X-Rays, MRIs, etc. because of "hot spots" that show up and turn out to most likely be musculo skeletal related from injury or stress fracture. However, my bone health is good.
I am 48 years old. I am unbelievably sad that after working myself back to a place where I trusted my body again post cancer I find myself in a hole that I feel keeps getting deeper. Post cancer everyone talks about finding your new normal. I am really struggling with that now.