Adjuvant therapy after op timescale

Hi sorry I can't help with your question as I am just at the start of my journey. I am due a radical hysterectomy next week and like yourself they wont be taking my lymph nodes ( previous radiation treatment for bowel cancer has made them unsuitable for any conclusive histology) 

May I ask was it the fact that they couldn't assess your lymph nodes that made them decide on chemo ( I cant have radio as already had in that area) 

I have a grade 3 aggressive sarcoma on the muscle of the womb - consultant said probably stage 1 

good luck with your treatment 

xx

Hi, thanks for responding. 

Mine was Stage 1B,( post op confirmed)  more than 50% through the myometrium, but not to the outside of the womb, nothing in the tubes, ovaries , nothing visible anywhere, nothing anywhere else on the scans, and no LVSI. Because my adhesions are so extensive, they couldn't do lymph nodes,  omentum biopsy, nor a pelvic wash, all of which they were planning to do before they saw the extent of the adhesions. I am not completely sure, but chemo seems to have been decided after my op, though not sure if it had been decided one way or the other before. I think it was the fact that it was more than 50% through, plus aggressive type, plus not having the other information, and I suppose not as definitive a look around as everything was stuck together. Also, duetobghat complication I was in surgery for 3 hours not the expected 2, and the surgeon said they did not do any more as they did not to want to cause damage that would delay adjuvent treatment. I hope to get more detail at the oncologist  appointment.  Sometimes there are too many questions for one appointment ( to think of, deal with or take in) . I am making a list for the next one.

Good luck with yours. xx

Thank you - we sound very similar xx

Hi there,

Yes I had stage 3 grade 2 womb cancer with LSV1. So I had my op on the 5th September, everything went ! Then I had my appointment with oncology on the 1st October  for  CT scan and planning for RT and Chemo. First RT was on the 29th Oct first Chemo on the 30th October. So 5 weeks of External RT with 2 Chemo's included ( Cisplatin) Long day ……….. Final RT on the 30th November. Then 2 High Dose Brachytherapy (internal) the following week. Chemo then changed to combination of Carboplatin and Paxiltaxel ( I can never spell that one !) Couldn't have the one I can't spell because I had a very severe reaction to it. Only had 3 more of the Carboplatin as my immune system went haywire ! I have been out doing my garden this week, energy levels still low, but I feel really well. I have been told that I am  cured. My CT scan showed no signs of Cancer. I'm lucky.

I think it is a good idea to write down any questions that you have, I think your mind just goes into a complete whirl with it all. It is a frightening time but my RT team were wonderful, explained everything to me and were so supportive. If you are lucky enough to have a good CNS use them, I used to ring with any questions that I had forgotten to ask, it is such a scary time. I hope all goes well with your treatments, it seems a long haul when you are in it, but just take each day as it comes. The tiredness is sometimes overwhelming. Oh and do go to a look good feel good course if they do one, amazing.

Take care,

LC

XXX

PS Had to get my diary out to find the dates, strange that it feels so long ago ???????

Hi, silly question coming g up here..what's LSV of LVS? Thanks.x

Lympho Vascular Space Invasion. Basically (for my story only) I had a cell that was travelling towards the lymph nodes, all nodes were clear, however they couldn't rule it in as cancerous or rule it out either. Hence the need for the extra treatment, and the fact it was stage 3. I didn't realise what it was either ! Frightened the bejaysus out of me ! 

LC

XX

It's got a scary title hasn't it...it would frighten me as well. ThAnk you for explaining that for me. I wondered if L stood for lymph but then couldn't figure out what the rest could possibly be. Now I know. I hope all your treatment works and keeps you free from it. God bless.xx

I had hysterectomy mid December and brachytherapy started 6 weeks later

good luck!

Thanks, that was really helpful . Feel like I have a much better idea what to expect now. 

So glad you are cured and that it's started to become history for you!

Did you get any major side effects, aside from the tiredness, and have they gone, or have you got used to them?

Take care yourself too.

MW xxx

Hi Mrs Woodentop, (love that takes me back to childhood)

Mmmmmm now side effects ? Well as I'm sure everyone here would say we all react differently. I did have bowel problems with the chemo/radiation combo, but I think a lot of people do, I have already had IBS for about 30 years, but everyone on the Rt team were wonderful, gave me a diet sheet, you will be asked each time you go if you have any side effects, and they act on them very quickly. Just be very very honest with them. I did have a couple of strange ones, typical of me ! but again my oncologist sorted me out. I promise you that they are on your side and will be so supportive. I did become neutropenic , basically immune system shot to pieces, but with rest and lots of fluids I have recovered up to a point. Just remember it all takes time to get out of your system. The only thing for me is the bowel, but as I say I really have had that for years, trying to get the balance right between a laxative and being constipated is a fine line !  So yes, some side effects, but nothing that can't be managed hopefully.

There were lots of laughs along the way as well, try and stay as positive as you can, cry if you can't, and come and speak to the other ladies here when you need to. I think it was Fairycake that told me it would be hard, but doable. She was right.

Good luck, big hugs,

LC

XX