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Post treatment support for monitoring side effects.
Have any of your oncologists spoken directly with you about what specific side effects of treatment to look out for in the weeks, months, and years after treatment?
Do any of your cancer facilities offer programs for this?
I am almost three years post treatment for endometrial cancer and I am just starting delayed therapy for leg lymphedema. A friend who recently completed treatment for breast cancer was appalled that measurements were not taken right after treatment for me as they were for her. It was imbedded into her care. I have also dealt with bladder, GI and bone issues as a result of my treatments.
In the UK, there are post treatment clinics for pelvic radiation disease, which is deemed an actual disease there vs just a bunch of symptoms to be managed (mostly on our own) here in the US.
Wouldn’t a post-treatment specialty department within Oncology be helpful? It would automatically be scheduled for us after treatment and maybe beyond. Yes, we all signed papers (under duress and in a state of shock) saying that we understand what might happen, but do we know what to look for? Do we know if symptoms are related to treatment? Do we know where to go for care? Even if the cancer is gone, the side effects go on forever. Oncologists feel that their jobs are done, but we are suffering in other ways.
I am curious to hear of others’ experiences regarding this issue.
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Monthly checks with an onco nurse?! Never had that. That’s a wonderful service from your provider.
But I do go into every appointment with a list of questions, whether the doctors like it or not. 😉 And, like you, I schedule my own specialist appointments and maintain notes. I call all of this my Cancer Homework.
NEWLY DIAGNOSED WITH LEG LYMPHEDEMA ALMOST 3 YEARS AFTER TREATMENT FOR ENDOMETRIAL CANCER.
I am wondering how others have managed this.
-The idea of wearing a full leg compression garment for the rest of my life, 24/7 really threw me for a loop. Will I have to purchase all new pants if I tend to wear tight jeans? (I don’t wear skirts & dresses.) How uncomfortable are these “stockings”? Can I take a break from them for a special occasion? What if I was a swimmer? (I’m not.)
-How am I supposed to keep my leg elevated above my heart if I’m not a contortionist? 🎪
-What about managing the psychological piece, ie the now constant reminder of cancer hell?
Any hints and help will be appreciated. Obviously, I will have to adapt to a new normal, but I’m finding that I’m upset about yet another side effect of treatment, one that will be more difficult to hide than others.
Thank you in advance for sharing experiences and suggestions.
As of now I have the monthly appointments with the nurse on the same day when I'm scheduled for immunotherapy (which will last for a year). We review and talk about my symptoms, medications and any other concerns for about 20 min, time includes taking the vitals by another staff member. From the start of my diagnosis I showed up with a notebook.
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2 ReactionsHave your doctor get you set up with an Occupational Therapist who does lymphedema massage. This treatment keeps lymphedema in control. I have lymphedema and I do wear knee high compression stockings but my condition has improved so much, I don’t wear them all the time. Wishing you the best.
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1 ReactionI am just starting with OT and have experienced the lymphatic massage, which I think I’m also going to learn.
Your improvement is wonderful! My therapist made it sound like status quo might be as good as it gets, but I am hoping for a more positive outcome like yours. 🤞
Thank you, Therese, for sharing your experience.
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1 ReactionIF...you are at MD Anderson, you have the best!