this is my first post. I wondered if anyone could help me with information. I will fill you in with a brief history I had a radical hysterectomy back in December 2001 (stage 1B no further treatment). Ten and a half years later it returned, ive completed 28 sessions of radiotherapy, 3 brachy, 8 chemo. (stage3). I have now been given the all clear, I have had my 3 month check up, but I was dissappointed when they told me that they don't want to do any scans as I have already received a lot of radiation. They have told me the best way to keep a check on me is through touch. Can anyone tell me what sort of check ups they are receiving. I have asked what will happen if it returns and been told it would involve radical surgery (removing bladder, bowel etc) all very scarey, do MRI scans use radiation, any advice would be greatly received.
MRIs do NOT use radiation (CT scans do). However, I suspect that the sheer amount of radiation that you have had (bear in mind that even though there will be other women who have had the same number of sessions as you had, they still might not have had as much radiation as you've had) means that the MRI would no longer be an effective tool of detection/assessment. What I mean by that is that I think it could easily create a false result after you've had that much radiation, because radiation works by disrupting the DNA of the cancer cells (they can't replicate if their DNA is confused, so the tumour shrinks) and is really good at doing this, but in so doing it can also create a large amount of scar tissue, which can show up on an MRI as the tumour enlarging again. Having said this, I am not 100% sure about this - it's just what I suspect logically - so you could use the 'Ask the Expert' service on the Jo's Trust site and an oncologist or gynaecologist will get back to you about it. I'd be interested to know the answer as well actually, so if you do find out, come back and let me know!
I know it is really scary because you probably just want them to be able to see inside you, rather than just see if they can feel anything, but an 'active' tumour does have a specific 'feel' to it and if you had a recurrence, it would be most likely to return in the area which is on the 'other side' of your vagina... if you see what I mean.... so actually it is a better way than it sounds for them to be able to check you.
The operation they're talking about in the event that you had another recurrence is a pelvic exenteration. As you say, this involves removing all of the organs from the pelvic area. It's completely understandable that you're scared about this - it's a very frightening thought - but all I can say is that there are women who have had this surgery who are still alive many many years later and leading a very full and active life.
A recurrence after such a long time must have been such a hard thing to go through. There is lots of support on the forum, so please do keep coming back if you'd like to.
thank you so much for your reply. I will check the details you have given me regarding the scans when I go for my check up later in the month. It's really good to hear positive feedback, I haven't met anyone else who is at my stage when I have attended support groups and I have felt very alone. I like to hear that there is always hope, I think the medical profession are so worried about being either sued or giving false hope that they end up coming across as very negative. I will get back to you with any information that is helpful.
thanks for your reply, I want to make sure that I am getting the best out of my check-ups. I found out that it had returned after I had a slight spotting of blood. Obviously after not having a period for ten and a half years the alarm bells went off immediately, I went straight to the doctors and they referred me immediately to my local hospital who scanned me, revealing it had returned.
your support is greatly appreciated, lots of love Brocks xxxxx
I think you're right - sometimes people in the medical profession don't quite know what to say for the best and so don't say anything very much, which can have the effect of compounding fear. I am lucky to have a consultant who is very forthcoming and relational, but my surgeon - although certainly a lovely person and a super-duper surgeon - clearly didn't quite know what to say and so ended up coming out with clangers like "And the bonus is, you won't have to put up with periods anymore." Oh yes, of course, the 'cancer bonus'. Right.
I think also sometimes, because of the fear, if we detect any level of uncertainty in our clinicians, we interpret that as a negative thing, whereas a lot of the time it is neither a positive or a negative thing - it's just uncertainty because as we know, unfortunately there are no guarantees.
Cancer is such an isolating experience and even if you do find people who have had similar experiences to you, sometimes it can still feel isolating because everyone is different, because their experience of cancer is different. Some people find support groups really helpful but I'll be honest with you, I went to one and I didn't find it particularly helpful either. I am unsure if that was because that support group wasn't particularly good (I felt there was a bit of 'competition cancer' going on, as well as quite a lot of judgement, and I came out thinking I'd pretty much wasted an evening) or if it's just because I'm not a support group kind of person. It's hard to know. But I do know that there were women there who'd had the same stage cancer as I'd had and the same treatment, and it didn't make me feel less alone with my own experience. If I'm honest, I think it was probably a combination of it not being a very well run group and me not really being a 'joiner' type personality.
I do find the forum really useful though. Have you seen on the Jo's Trust site the information about 'Let's Meet' in September? I haven't been to one before, but it's an annual event where you can attend lectures and workshops and it's an opportunity to meet up with other women from the forum, so it's possible you might find that useful. This year it's in Newcastle, which is at the other end of the country for me, but I am going to try and make it just because I think it could be useful.
Kath, don't panic my love! The person you see (who is probably the same person who gave you your diagnosis?) is your consultant, who will be a gynaecologist. Even though your gynaecologist could specialise in gynae-oncology, that does not make that person an oncologist. An oncologist is specifically a cancer specialist. You will have been assigned an oncologist but it is possible that you didn't ever meet this person - he/she will have been crucial in the decision making about what treatment was suitable for you and would have been a lead person in the MDT meetings at which your case was discussed. An oncologist HAS to be present when a cancer operation is taking place and as they are often excellent surgeons, it often works out that it is the oncologist who performs the operation. It doesn't have to be like this though - the oncologist has to be present, but he/she doesn't have to be the one carrying out the operation - a gynaecologist is just as capable of doing this and often it is the gynaecologist who does the operation, with the oncologist present. It may be that's what happened in your case.
Originally my gynaecologist was going to be doing my operation, with the oncologist present in theatre. But then I got kicked off the theatre list after having been there all day and my op was rescheduled for 1st Nov. My gynaecologist was on leave that week (it was half term!) and so it was my oncologist who did the surgery by himself. The outcome and the competancy of my surgery would have been the same whether it had been done by my gynaecologist or my oncologist.
I have been in same situation as you my cancer came back after surgery 5 years later, i was also then treated with chemo and radiotherapy, i am now coming up to 2 years all clear, i have not been given scans due to radiation and have alot of scar tissue, but if i have any pain or anything odd I call my mamillan nurse who puts it to my consultant who will then make an appointment as soon as possible if she thinks it is necessary, they seem to be very thorough in their poking of me lol! I am still on 4 month checks so they are keeping a close eye on me, also the loneliness and fear of it coming back does get better with time, i too go to meetings and am the only one there with a recurrance but hopefully i give hope to others and may alleviate their fears, when the odds were against me 2years down the line i am still here, just gone back to work and am trying to enjoy every breath x
It must have been a huge shock when your cancer returned. I am ten years post treatment. Radical husterectomy, removal of ovaries for a 1B2 [5x7cms] tumour. I still have yearly check ups where they have a feel around and take a vault smear. I know this varies with different hospitals and that vault smears are of no use after radiotherapy. Hope you continue to get the all clear
glad to meet someone like me at last!. It's really encouraging thank you for replying. I find it really difficult when I get pains anywhere to know whether i'm being paranoid or whether I need to do something about it, at the moment I give it a few days and if it goes I hope it was just old age!. I am 46 and most of my friends complain about various aches and pains. The ones I have had since my treatment which was 8 months ago are pains in my bowel, I get bad stomach ache after eating and I often have to run to the loo. I also get pains in my right leg near my groin where they aimed some radiotherapy on my lymph nodes it feels tight and sore deep in the muscle if that makes sense. I also had 3 brachy and I have to use dilators 3 times a week, the skin inside feels very fragile, (I know this is very personal but I do find it painful when I attempt sexual intercourse with my husband) who has been amazing and supportive, but I do feel the poor man needs some love, so I keep trying. Do you suffer any of these pains and do they ease off?
I'm so sorry it came back....ten years later........I'm about to celebrate a year.....but of course you always worry, what if...how on earth did you know after so long. I've only had one check since my operation and don't know when I'm going back to the hospital for a check, I haven't heard. My bowels are hopeless, my right leg is still numb, I have lymphedema, I've put on so much weight....onwards and upwards. Please do tell how you found out?
at last!. It's really encouraging thank you for replying. I find it really difficult when I get pains anywhere to know whether i'm being paranoid or whether I need to do something about it, at the moment I give it a few days and if it goes I hope it was just old age!. I am 46 and most of my friends complain about various aches and pains. The ones I have had since my treatment which was 8 months ago are pains in my bowel, I get bad stomach ache after eating and I often have to run to the loo. I also get pains in my right leg near my groin where they aimed some radiotherapy on my lymph nodes it feels tight and sore deep in the muscle if that makes sense. I also had 3 brachy and I have to use dilators 3 times a week, the skin inside feels very fragile, (I know this is very personal but I do find it painful when I attempt sexual intercourse with my husband) who has been amazing and supportive, but I do feel the poor man needs some love, so I keep trying. Do you suffer any of these pains and do they ease off?
