so yesterday was my big results day. Good news- no spread to lymph nodes, bad news- they like margins to be 12mm clear, mine were 5mm clear, radiotherapy def given at 3mm so I have been offered 5 wks daily radiotherapy with 2 internal sessions but is up to me if I do it or not. So what to do? Any advice? Anyone else had similar?
i asked what other people tend to do in my situation and was told by the 2 specialists I saw that mine is a rather special situation that rarely happens. Great... Bloody typical...
I am a whittler and I know if I do not have the treatment I will continually be thinking that the cancer is back and I will have all kinds of symptoms going on... BUT I've read around about all the side affects and really really don't want the treatment. The two specialists couldn't say that the benefits outweighed the affects as cannot say that I will be "cured" after treatment anyway so may come back even if have the treatment and, if it does, I wouldn't be able to have radiation traetment where I have already had it...
oh my head hurts. Is good news with a but. dont get me wrong, I am so so so pleased it has not spread but being given this decision to make in the next few days is a sleep killer.
any thoughts from anyone will be greatly received.
Gosh that's a hard one to figure out, i'm sorry i can't offer experience advice here but i know that there will be some ladies who can.
From my perspective though and now i understand that you can only have radiation once, i think i would be inclined to leave it and keep that option in case it would ever be needed in the future. As they've said you have the all clear and no lymph node involvement.
Hi Dons. I had a similar dilemma last week. I had clear margins but one lymph node out of the 27 that they took had miniscule cancer speck on it. I was referred to oncologist who recommended radiation and chemo. I weighed up the pros and cons. As patlini says I was told you can only use rad in the pelvis once and the lasting damage to bowel and bladder can effect your quality of life going forward. I didn't want to waste it. The decrease in my chances of cancer returning was only 10% if I took the treatment now so I declined. I figured the disadvantages outweighed the benefits for me, but only you can decide what's right for you. I was lucky my husband agreed with me. I am making a conscious effort to improve my diet and mental attitude as I've read that can do as much good as the treatment. Rad/chemo is so toxic. I've st as rated reading a book called Anticancer - a new way of life. It's good! What ever you decide has to be right for you and your family. You can go back and talk to your oncologist or surgeon or MacMillan nurse for more info/statistics if that might help. Good luck and let us know how you get on. X
My situation was very similar, no spread but a close margin on one side, where the tumour was close to my bladder. I was also offered chemo radiation but like you was very unsure. When I saw the consultant she said I had about a 10% chance of recurrance but also about a 10% chance of permanent bowel and bladder damage from the radio. I was also concerned that you can only have the radio once, I wanted it kept in my arsenal just in case!
So I decided against it BUT they did suggest I had the brachy ( internal) only. Apparently they often just use this alone for womb cancer. I think it depends where your tumour was whether it is effective but luckily she thought it could work for me. I had 3 sessions, each took about 10 minutes. It was painless and I had no short term or long term side effects. The only thing is that I now have to use a dilator but I can live with that.
I wonder if it’s worth asking whether this would work for you? I felt like I was doing something but without all the side effects that come with full radiotherapy.
Good luck with your decision, I’m sure you will make the right one for you.
Ali x
Hi Dons, what a dilemma - I don't know what I would do. On the one hand I can see you would be reluctant to use the one time chance of radiotheraphy in case you needed it later, but on the other hand it may be this would totally kick it in to touch
Wonder if its worth asking about the Brachy as Ali had - might that be a compromise ?
This is all just horrible isn't it. Sorry I cant offer anything other than cyber hugs (I am keeping the cyber chocolate for myself !)
My margin was 5mm on one side too, I as you know decided to have the mop up treatment, the risk of it coming back is lowered plus I was worried about having cancer cells left. Unfortunatley not everyone has the choice, I dont believe I did.
Take care in what you decided, you need to think about it all properly.
I was in your position after my rad hyst. Microscopic cancer cells were found in two out of the 7 nodes in my parametrial tissue (not the pelvic lymph nodes). Apparently it's very rare for the cancer cells to be found here without them then breaking off and travelling into the pelvic lymph nodes. So I was left with a choice of having additional treatment of radiotherapy and chemotherapy. My oncologist said that they did not have the data to say whether the extra treatment would decrease my percentage recurrence rate. So the choice was mine and I decided not to have the treatment as for me toxicity and the side effects would outweigh any benefits. I had no doubt about my choice and do not worry about the cancer coming back as even with adjuvadent treatment there is no guarantee. I guess you need to ask yourself whether you can live with some uncertainty or are willing to face any possible side effects from the extra treatment. Not a great decision to have to make so I really feel for you. Take care, Tess xxx
Thanks to all for your advice. 'Tis a hard and unusual one I know. I've been looking through past posts on old forum for anyone else with similar prob but found very little. So have read through all the literature I've been given and looking at the side effects of this therapy- they are not nice at all!! Just don't think I can put myself through all of that when they don't actually know if it will make any difference or not And any difference it might make will be minimal as at the mo anything left will be random cells- how do you target those?
so I think it's best to keep radiotherapy inn my arsenal INCASE cc rears it's head again in the future, only get one shot at it as it is. I know I will whittle and think every ache and pain is a reoccurrence so I will just have to become friends with my GP and visit more often, not ignoring any little things like I use to.
this has been a hard decision to make. I just hope it's the right one... Fingers crossed
A hard decision indeed. Your right in that we will all be super cautious with our health going forward. I've gone from very very rare GP visits to being part of the furniture, lol. I'm sure they will give me my own parking space there soon! But if anything niggles you just go and get it checked out. How is your recovery from the hysterectomy going? Are you feeling ok? xx
Good days and bad. Just so bloody tired!! Wanted to have a walk outside yesterday but so blustery that hubbie took me to asda for a walk up and down the aisles!! Cost a fortune...!
hubbies birthday today and were going to see Bill Bailey on tour but is 2 hr drive at night then busy theatre and 2 hr show So he is taking mate instead... :-( oh well.
strange cos think I'm doing ok for a few hrs then the next day I'm in bed most of day! Results on Tuesday did nothing for mental health. Achy back and legs today. Feel old!!!
how did your early recovery go? Any tips? How u doing now as ur a couple of months ahead of me!
A hard decision but i think if i was in the same situation i would do the same - those side effects sound scary. As to worrying about every ache and pain i like Tes am becoming a regular at my GP's they should offer reward points! but really i don't care i ignored what was probably symptoms last year and look where that got me. I believe you have to be an advocate of your own health along side the medical professionals.
As to early recovery, you have described it exactly you think you're doing well and then bam flat out the next day. Even at 8 weeks post surgery i seem to have one day a week iike that. As to tips, take it easy try not to be on your feet to much, i have noticed that when i do this my stomach will swell!
I started my walks at 5 minutes out and back and pushed a little further now i am doing stuff around the house but i still can't empty the bin properly etc
I'm 13 weeks post surgery now and please be assured that it really does get better every week. I would say in the early stages I took it really easy, in terms of I did not lift anything heavy, vacuum or change beds for at least 5 weeks.I did nothing but walk and rest and go out for lunch! I drove on week 4 but felt like I could have on week 3. As soon as I got home from hospital I made sure a did at least a 30 minute walk every morning. Even if it took me forever I pushed myself and made myself do it. Then by week 3 I walked daily for 1 hour or sometimes twice a day an hour at a time.I might then come home and fall asleep for an hour but walking stretched me out and got my blood flowing.So if your active and then worn out, don’t worry about it, just have a nap.Just don’t lay down all day every day for the next 6 weeks or you will feel really crap.I really really think this helped get me better so much quicker.So if you can manage it give it a go.My op was in July so I had the best time of year to go out walking and then lay on sun lounger, so I know this weather and dark nights might not make you feel like getting out but do try.I went back to work after 6 weeks. I’m also back to the gym doing spinning, body pump etc (week 7).I still get a bit of swelling but apart from that I feel really good and will get this checked out next Friday at my 3 month check (my GP said it was normal at this stage).Here are a few more tips that really helped:
·Drink loads of water and cranberry juice and eat as healthy as you can (including a bit of chocolate and err wine, I’m not a saint! Ha ha)
·Take your pain relief on a set schedule
·When you can have a bath use Epsom salts.They are brilliant for swelling and make your skin nice and soft
·Use Bio Oil on your scars.Mine are tiny and faint. I quite like them now!
·Get a lymphatic drainage massage (again, amazing and just gets the lymph system moving)
·No Lifting!!
·Make the most of your time off work and be kind to yourself
·Wear your sexy DVT socks when not active (I know, but they help)!!
Everyone recovers at a different pace so you will know what your body can and cannot do.So don’t beat yourself up if things take you longer to do. I think it helps to get yourself in a bit of a routine. I also do not have children to look after, so my regime was easy for me to do but may not be for someone who has little ones.The important thing is to realise that you are going to have to be selfish at this stage. You have to focus on yourself and make sure you do everything to get yourself better as quickly as possible.I really hope this helps.Tess xxx
Well done for making a decision, it’s awful isn’t it! I just wanted someone to tell me what to do and no one would!
My margin was only 2.5mm on the bladder side but the pathologist still thought the risk of recurrence was low- let’s hope he was right!
Once I made my decision I decided I would live with it and not beat myself up over it. It felt like the right decision then and it still does. If the cc does come back I won’t blame myself, I’m a great believer in fate.
And as for recovery my op was in Jan and I honestly feel great now. Normal is a little bit different but is just as good. In some ways I’ve changed for the better. I don’t stress about little stuff anymore, I’ve sorted out what’s important in life and I make sure I find something good in every day- well most days anyway
Wow tes!! Youre a super hero!!! I will aspire to ur level but not worry when I don't get there! Glad u found the energy and will power to do this. I love walking (we do a lot as a family, even taking our daughter on all day treks up Malham cove and round Yorkshire Dales this summer) but the weather is not encouraging... We have a treadmill but I hate it... Urgh... We are out and about this weekend, will have to see what Monday brings!! Really looking forward to when I can have a bath! Am drinking LOADS of water and eating my muesli... Will take ur tip on Bio Oil. Socks are still on. Not doing a lot with my time as really have jelly brain so can't seem to focus on anything for long...
ali, thanks. The worry will always be at back of mind but best decision for us both I think. The side effects are just too much to put self through if not absolutely necessary, I agree. Just wish life could come with a few more guarantees sometimes.
pat, thanks. My hubbie has been very protective trying to do everything for me... But I gave bathroom bit of a clean earlier, made a birthday cake yesterday and went out for lunch today so making small steps!! It's just the picking up of all my daughters rubbish I have to stop myself doing... Realised now how much I tidy up after her all the time!
thank you all. It's always good to hear how others who have been through it all are doing, real advice.
hi Dons i think im in the same boat as you! not exactly sure what my margins were but im on border of tumor size as its 4cm! think less than doesnt get chemoradio, and more than does. also pathology showed some sort of little vessels present in the tumor which i think is risk factor for recurrence. have requested another meeting with surgeon/oncologist to try to help me mke my decision but its really hard to know what to do for the best!
I feel for u, i really do. Have u been offered further treatment? At my results meeting I was offered the radiotherapy and bracheotherapy but it was explained the adverse side effects from the treatment so weighing it all up decided against it. i never asked the size of my tumour, I should have! Nor did I ask any other details. Hope u get the right support. My oncologist was fantastic, so clear which made my decision for me really.
