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So a couple of weeks ago I had my first post-treatment MRI and it showed an anomally, Once I was informed about that I was booked to have a PET scan last monday with a follow up telephone appointment for 8th Sept. However only 1 day after my PET scan they called me to come in for a consultation for today (25/8/20). I knew it wasn't good as soon as they organised that.
Well, they found a hot spot in my cervix but it showed up in 2 different places for both the MRI and PET, so they want to do a biopsy there to check if it is active cancer or inflammation.
Also, my cancer has spread into a number of lymph nodes in my pelvis and they were apparently showing up mega hot, or whatever term they use.
I was given 3 options for treatment and I would love some cold hard truths from you lovely ladies on your experiences with these options as I'm left with a tough decision to make.
1. Surgery to remove the lymph nodes, which comes with risks because now they are surrounded by scar tissue from radiotherapy. The treatment can cause numbness in the leg and also lymphodema as well as a risk of bleeding during the procedure, which is a concern. This treatment is the one they would like to do the cervical biopsy at the same time to reduce the need for multiple GAs. 15% chance of lymphodema
2. Cyberknife treatment - a new radiation treatment on the nhs that pinpoints the cancer cells directly, but the only place that does that is London and I might get rejected because of the high dose of radiation i have already had from my original treatment. Also it could take longer to get this done because of the biopsy that i mentioned above needing to be done. (Honestly, I zoned out a bit so I couldn't give all the details now). 5% chance of developing lymphodema
3.Chemotherapy for 18 weeks (once every three weeks). The drug would be one that makes me lose my hair and there is no guarantee it would work. According to my surgeon, this is the least preferrable option.
They would prefer me to have the surgery and I have been asked to make a decision pretty sharpish (in the next 2 weeks) as the cancer being in the lymph nodes is a dangerous place and at high risk of ending up somewhere else in the body.The goal is to do something about it in the next 4 weeks.
I don't know what to do. I just got back into my mountain biking and I really don't want to have to deal with more setbacks, or have to deal with the risk of lymphodema. This is not including the possibility that there might be some active cancer cells left in my cervix and what may come if that is the case.
Can you ladies please tell me your toughts and experiences with any of these things?
October 2019 - smear test
November 2019 - results back; hpv with severe dyskaryosis, colposcopy organised.
November 2019 - colposcopy biopsy taken - confirmed abnormal cells
December 2019 - lletz performed
Jan 2020 - called in: confirmed I have cancer
Tests run through Jan and Feb. During this time went through fertility treatment; 5 eggs frozen.
End Feb - confirmed stage 2b CC (updated info, staging changed to stage 3 invlving lymph nodes)
Treatment starts March - 28 external radio/5 chemo/4 brachy
Only sat 3 chemo after developing tinnitus
April 25th - finished brachytherapy
July 2020 - MRI