Hi everyone, I’m finding reading all of your experiences really helpful after being diagnosed last week. I’m trying to find some information on whether radical hysterectomy or chemorads would be the best treatment for me. My consultant says that I’m on the cusp so they are going to discuss in the MDT but if anyone has had a similar experience I would be interested in hearing your experiences. Thank you
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Also 1B2 but rare type and post-menopause so radical hysterectomy not a difficult decision and coming up on starting 7 weeks chemo and radiation. Did not care one bit about losing all the parts. I had no lymph or other spread and good margins but with a non-HPV type (mesonephric adenocarcinoma), I get the post-surgery gifts with purchase. FWIW, the laparoscopic surgery was quite easy recovery for me, but everyone’s situation is their own.
As I am not a doc, cannot advise but that is my personal situation.
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Hi. Sorry you’re in this situation and facing a decision. Neither is ideal obviously but it’s good that they are carefully considering a plan for you. I wasn’t given a choice but had an open abdominal radical hysterectomy with sentinel lymph node dissection and I’m 3 months post surgery now. It’s been a long and slow recovery but I am feeling much better now with just a few after effects. My pathology (/histology I can’t remember which!) showed no further spread thankfully so I don’t need chemorads, just 3 monthly follow ups. I thought that surgery depended on size of tumour (less than 4cms operable) and spread or not, so hopefully your team have taken scans to inform their decision.
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Hi - I was also ‘on the cusp’ but MDT recommended surgery which at 46 is what I wanted as well
Hi Kelli, that’s a lot of treatment — how are you? Super well, I hope. Would you care to share your experience? I am also (currently) borderline 1b1of the squamous cell type…MRI and CT tomorrow. Xx
And how are you doing Lisa? I hope you got the all clear? Xx
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Sure - I have now finished all that stuff! Because my diagnosis was a rare sort, docs look at it as aggressive so I got the full post-program after my hysterectomy. Of course I only processed the worst-case stories and built it up as much more than it ended up.
Chemo itself was no big deal (luckily - some people react badly) but the drugs for nausea and other side effects made me loopy and I had a hard time sleeping. Radiation first two weeks no big deal, 3rd week into 5th was really tired by Fridays and had digestive issues that I could have managed better at first but ultimately figured out. The internal radiation was uncomfortable but not terrible. I have found that docs give you very little info so you have to be proactive and ask a lot of questions. They’re not unhelpful intentionally, but I think it’s all mundane to them.
Do you have specific questions I can answer? Happy to help.
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I’m 16 days post surgery - recovering well. Just waiting for the histology results back from the lymph nodes. Good luck with your treatment
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Hi Kelli, thank you for the generous offer. The subtext behind my questions is, if I have to go the chemorads route, I wonder if I will be able to work my desk job. Or say, get on a train to the seaside if it all gets too much? Ie…can I still be me on 6, if not 8, 9 or 10?
I am so encouraged by your story; although I know everybody responds differently, I appreciate the honesty when treatment IS not as dreadful as we fear. X
And you, for great results! All being well, the hysterectomy is your only treatment right? Was it laparoscopic/robotic? Xx
Yes - fingers crossed once results come back should get the all clear. I had keyhole and was only in hospital 2 nights x
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That’s grand , and yes 
I continued working (also office-based), though from home to save the time of commuting. Tuesdays were long with radiation morning, weekly rad onc check-in, and 6 hours chemo thru 4 pm. So I did reduce my hours some and communicated a lot about what I could/could not do. It gave me something to do and I didn’t feel so behind when I was able to resume full time. As for the seaside train, that’s a matter of personal situation and how you feel. I had planned a trip to New Orleans for my husband’s birthday that included a concert and we did end up cancelling well in advance since it was too much wild card as to how I’d feel…it was week 5 of the 7. Hope that helps, let me know what else I can share.
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It does, thank you so much and will do, am sure I’ll have other questions. 
I’m not work-obsessed but I do love my job, I also need it as am single 
and I’m just worried. Xx
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