I recently had my appointment with my Oncologist after my success operation for womb cancer. I had Stage 1b with Grade 3. I was offered chemotherapy and internal radiotherapy. I have Churg Strauss syndrome which is an autoimmune disease which affects small and medium blood vessels which is under control using methotrexate. However the disease has left me with tingling hands, feet and sometimes legs (peripheral neuropathy). Chemotherapy drugs may cause peripheral neuropathy and I don’t want to my symptoms worse and may be find I have worse problems walking and using my hands
The Oncologist said in my case he would normally recommend chemotherapy but because because of my illness he would leave it up to me to decide. Has any body had similar problems?
Hi Farnworth You will hear ' everyone is different' many times and it's true but sadly it doesn't help. I was in good health up to my diagnosis in June 2021 I was stage 1A Grade 3 'type SEROUS' I had full Hysterectomy removal of ovaries part of cervix, and Omentum My surgery went well and Surgeon confident enough margins had been removed , but It was still suggested by the Oncologist that I had chemo due to the erratic and unpredictable Sereous, and Like you i was told it was my decision. I chose to go ahead and was offered 3 rounds of chemotherapy of Paclitaxel and Carboplatin but after the first one I developed peripheral Neuropathy in my lower legs and ankles and became breathless I was still unwell when the 2nd one was due so after further discussion with oncologist it was agreed we stop treatment. I still wonder if it was the right thing to do. but then again there are no gaurantees with Chemotherapy anyway, so I made the decision that was right for me at the time.
I wish you well whatever you decide Take Care x
Hi Nannyjanet. Thank you for your input, it helps me making my choice. I am seriously considering not having chemotherapy, but i am waiting to speak to my Churg Strauss consultant before I make it.
Hello Farnorth,
I was Stage 1b and grade 3. I had 4 cycles of paclitaxol and carboplatin followed by 25 sessions of external beam radiotherapy. I did not have brachytherapy (internal radiotherapy) as it was not recommended for me. I had these treatments to reduce the risk of the cancer recurring. I have been left with some peripheral neuropathy in my hands and feet which I believe was due to the paclitaxol. It started after my first cycle of chemo so they reduced the dose for the second and third cycles. My fourth cycle it was reduced to 50%.
It is only a decision that you can make with all the information that the consultant has given you and taking into account the autoimmune disease that you have. Have you also got a consultant for the autoimmune disease that you could speak with? Everyone is different and reacts differently. I didn't have half the side effects I was expecting. For me I feel it was the right decision to go ahead and I do not regret it. Although my cancer could always return at some point the treatments have greatly reduced the chance. For me the fear of it coming back or spreading was worse than the fear of the side effects.
It may also be worth thinking about which type of chemotherapy they are offering and whether it is one that has peripheral neuropathy as a side effect. For me they only reduced the dose of one of the drugs I was having which suggests to me that the other chemo drug was not to blame.
Hope this helps. It's a tough decision I know.
Jane
Hi Farnorth,
Last year I had 6 rounds of chemo, Paclitaxel & Carboplatin, following a total hysterectomy and removal of many lymph glands for Serous Endometrial Cancer. I also had 4 rounds of brachytherapy. Having the chemo was a no brainier for me as I was Stage 3c. After 4 chemo sessions, I started to experience peripheral neuropathy that caused awful lower leg pain as well as tingling in my hands and feet, so the final 2 sessions were reduced to 80%. It’s 6 months since I finished chemo but I still have peripheral neuropathy and I’m told it could take 2 years to go away. I also read that in a small percentage of women it never goes away. We all have to make so many decisions on our treatment, based on what type of endometrial cancer we have, the staging and grade and other health issues we also have to deal with. Despite the side effects, having the chemo was the right decision for me. Perhaps in your case it may not be so clear cut and you may decide that it’s not for you. I also wish you well with whatever you decide and send you my best wishes.
Thank you Jane. I posted last night, but your reply has really helped me. Although everyone is different, it was good to hear that you didn't have as many side effects as you were expecting. My treatment is the other way round, starting with the 25 sessions of radiotherapy and my dilemma has been that I was very borderline for treatment, but as you have done, I will go ahead with treatment for peace of mind in the future.
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