Diagnosed 3c back in Feb/Mar and went through the 6 weeks chemo / radiotherapy with excellent shrinkage on the 6 week MRI - so went into the 3 month appointment thinking ok either all gone or may have a little bit left but residual radio will be killing that off. Bit blindsided as told in 3 month review there is an area that still looks suspicious at the top of the vagina back in for exam under anaesthesia and biopsies. Any one else had this experience as they are saying if nasty then surgery!
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I am so very sorry to hear this. It sounds like they are considering Total Pelvic Exenteration surgery. I know it sounds dreadful and it certainly isn’t easy but it can be curative and well worth trying. I had mine done 5.5 years ago and I am doing great. I think if it’s spread to the vagina it’s the most likely option. Good luck and feel free to PM for more information.
Karen
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I wasn’t 3c, but 2b. Also had a suspicious area at 9 months out at the top of my vagina and biopsy under GA. I tried a salvage hysterectomy which failed due to too much radiation damage, and then had a total pelvic exenteration 3.5 years ago. It’s the best option for residual cancer which hasn’t spread outside the pelvis.
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Why do they need to take bowel and bladder when contained in the vagina ?
There are different types of exenteration surgery-anterior, posterior and total, so some ladies have their bladder removed and keep their bowel, some have their bowel removed and keep their bladder. My cancer started to spread very rapidly over my bladder so it had to go, and I asked for my bowel to be removed-it was damaged by radiotherapy but had no cancer. I wanted to try and give myself the best chance of success with surgery and the safest thing for me was to take everything and get all the cancer removed with clear margins, which is what happened in my case. Radiotherapy had resulted in my organs being stuck together so it was better to remove everything rather than try to separate them.
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Things aren’t as separate as we learned in biology lessons. Everything is joined together with some shared blood and nerve supply through which the cancer can spread. Once it has all melted together from radiotherapy it is extremely difficult to both protect organs and get all the cancer out. I know of one lady who didn’t want TPE but the bladder was ruptured during the surgery and that was far more difficult to manage than a urostomy, and sadly it wasn’t curative either. It’s incredibly daunting and I know it’s terrifying with such a very long recovery period. However, it’s the best chance to get the cancer out en block with the attached organs. If they offer it to you may be able to have successful vaginal reconstruction surgery so ask about this in advance.
Feel for you
Xx
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Update here - EUA was clear and no biopsies taken couldn’t see area from MRI- so hopefully a bruise or inflammation post treatment - so back into the MRI machine i went and just waiting that report now
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