I had my total hysterectomy, including tubes and ovaries ( no lymph nodes cos abdominal scar tissue from a myomectomy many years ago made them inaccessible), for Serous grade 3, stage 1B, on 15th April. LVS was clear. I have my first appointment with the oncologist on 22nd May to discuss adjuvent chemo and radiotherapy ( my surgeon said I will be having both types of radiotherapy and chemo.) Can anyone tell me what the timescale is likely to be from here ( planning CT and start of treatment and in what order), and whether my time taken from op to ontology appointment so far seems standard? Thanks.
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
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
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.
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 !
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
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.
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,
Hi Mrs Woodentop,
I had open surgery but healed really quickly and had my RT about 8 weeks later and that took 6 weeks all in all to complete. If you can get to the hospital early for RT I’d advise taking the first appointment. It means you don’t get any delays if you’re first in! The diet for radiotherapy is a bit boring - low fibre so no greens or fruit for a month. It goes quickly though. I was really lucky, wasn’t tired and no bowel issues. I used to go to gym on my way home from hospital for a light workout. They say that keeping active helps with tiredness.
I started chemo 3 weeks after RT and had 4 cycles (some people have 6 I think). I didn’t feel that bad during chemo but took the anti sickness drugs religiously and ate light and nutritious food. I was maybe a bit tired and had achy long bones (sorted with ibuprofen) and itchy hands (cured with a piriton) but nowhere as bad as I thought I’d be. I was pottering about the next day, not going crazy but managed to pop out for coffee and by the last chemo I met friends on my way home for an hour in the pub (clearly wasn’t drinking!!
The thing I struggled with was the hair. I tried the cold cap, found it strangely pleasant, but wasn’t lucky...again some people are lucky and keep more hair than I did.
My advice if you’re bothered about such things is to think about getting your eyebrows microbladed (semi perm ultra fine tattoo) - basically it means when your brows fall out you’ve still got some definition there and you can’t do it once you start chemo.
Also if hair is an issue for you think about it well in advance. I was very lucky and got a custom made hair replacement wig made that was semi permanent and was fixed to my head. I used to get it removed and blow dried every 3-4 weeks. Otherwise I slept, swam, gymmed showered in it and blow dried it like my own hair. Best money I’ve ever spent.
I went back to work a fortnight after chemo finished and was fine. It was nice to get back to normal.
Its my year since last chemo anniversary today and I feel great as I hope you will be when this period of your life is over.
This might seem very daunting and it is tough but it’s doable and you’ll get through it day by day.
lots of love
Hi Amanda, I just want to say congratulations for your year anniversary out from chemo, you sound so positive, happy and upbeat , you really do show the new ladies how it is possible to come out the other side feeling stronger than ever, well done on your journey hun, xx
Thanks for that LC,
I can totally relate to the wayward bowel history. I did wonder about a generally low calorie high protein diet as that doesn't leave you much to eliminate, and I could do with some weight loss for general health anyway. I will discuss with them , of course, as I content to do anything counter productive, and as I don't want to mess up the targeting by changing shape significantly. I guess you need to keep your strength up too.
Thanks for your support. xx
Thanks for the advice. Sounds quite like a high protein diet, which works for me and leaves less waste to eliminate anyway. I expect they tell you to eat carbs too? But I wonder if one can get away with not, if one could do with losing some weight as I could. Or is lack of energy a barrier to that?
I am encouraged by how much you managed to do while your treatment was ongoing. I am pleased they help you out with side effects rather than just saying it's to be expected.
Not too bothered about the hair at this point, but thanks for the tips, especially the semi permanent wig, I had not heard of that. I have actually gone for a pixie cut while I have the chance to do a bold change of style , on the basis that if I hate it, it will be gone soon anyway, but I will know for future reference. Not sure about it. Also not sure I have the face for no hair, so will no doubt go for a wig.
I will google the eyebrow tatoos. Not heard of that either.
Congratulations on your anniversary.
Lots of love
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