I have recently been diagnosed with stage 1b1, grade 2 squamous cell carcinoma. My tumour is between 2 and 4cm (confirmation of exact size requested).
I am 29 years old and desperate to preserve my fertility to start a family with my fiancé in the future.
With this in mind one of the options given to me for treatment is having neoadjuvant chemotherapy to shrink my tumour prior to having a radical trachelectomy. Thi would hopefully allow them to do this surgery with better margins and therefore a higher cure rate.
I understand this is not the preferred treatment in the UK but I have been reading about studies in the USA, other parts of Europe and China where this is more common.
Does anyone have any experience of neoadjuvant chemo? Or know anything more about it?
I am struggling to get any "anecdotal" stories as all the information out there is in research papers and very sciencey!!
Any information/advice/support would be great.
I was diagnosed as stage 3c. My tumour was large (about 10cm) and it couldn’t be determined whether it started in my uterus or on my cervix. Because of the size of it, I started my treatment with 3 cycles of carboplatin and taxol, then continued with the more standard treatment of chemorads and brachytherapy after that. The initial cocktail stopped the bleeding and cramping that I had been experiencing within days and started shrinking the tumour. After only two cycles it had already shrunk by a few centimetres.
For me, I had one treatment every 3 weeks. It was a long day in the chemo room, but as most ladies will tell you, once you get over the shock of actually having to be there, it can be a surprisingly nice day since everyone is so pleasant.
I found the hardest part of the cocktail was the hair loss, though it started growing back a bit just prior to my third cycle. With the exception of a bit of tingling in my toes, the other side effects lasted only a few days then I had two more weeks to recover before having the next cycle.
I was glad to have it since it put me in a better place for my following treatments. I found it much easier to handle than the chemorads, and my radiation oncologist believes that my positive response to the chemorads was at least partly due to having the initial cocktail.
Good luck with your treatments.
I also had a similar diagnosis as Daisy above so they did neoadjuvent chemotherapy as there is an ongoing trial at the moment that is showing promising results.
I too had 3 cycles of taxol and carboplatin. The first two cycles (every three weeks) were fine (a bit or tiredness and nausea) but I ended up with sepsis after the third one. This I believe is not common though so doesn’t mean it will happen to you. unfortunately my cancer seemed to be resistant to this chemo and no shrinkage was seen on CT (although a PET scan would be needed to see how alive the tumour is I believe). I managed to keep my hair although an awful lot has fallen out by using a cold cap. My hair was very thick to begin with and now it’s just rather thin but I could go out without a hat.
I dont envy you your decision. It must be very hard. I think you just have to gather as much information as possible and then follow your heart. Maybe once the size of the tumour is confirmed it will help you make a decision.
all the best x
Thank you both so much for your replies.
I have decided to go for the NACT and I am starting in December after some fertility treatment.
My oncologist said he will use cisplatin and paclitaxel...I don't know if the side effects are the same?
Wishing you both lots of best wishes.