post operative treatment

Hi Love to walk 

Welcome to the womb group, there are lots of lovely ladies here to explain their experiences and support you. I don't have your type of cancer but mine is also an aggressive type. There are lots of the other ladies that have this type though and I'm sure that they will be along soon to offer their experience. It is a good idea to write something for your profile as this helps others for reference for their replies to you and also saves you repeating yourself. To do this, click on your username, then profile and don't forget to save, you can read any of our profiles by clicking on our usernames. 

You don't say how old you are but the team may think that you would benefit from these treatments to reduce the chance of the cancer coming back. I was advised that aggressive cancer's usually come back but that they generally respond better to chemo. The comments about age and underlying conditions will mean that they would not be offered to someone that fits that criteria as their bodies would not cope with the treatment or that the side effects outweigh the risk. I would suggest that you have a chat with your CNS or you can call the Macmillan helpline and speak to a nurse, this is the link to contact https://www.macmillan.org.uk/about-us/contact-us

Best wishes for your decision,

A x

Hi Love to Walk

I too was once in your predicament and I hope this thread with my questions and the lovely ladies on here answered may help you too in some way. X

community.macmillan.org.uk/.../help---decision-to-make

Hi Mad. Thank you so much for that. Have been awake since 5am with my head spinning! Like I said in my original post, if I hadn't been told I was very borderline and that the MDT meeting took 2 hours to decide, i probably would have gonecahead with the treatment without question! I have now booked a telephone consultation with my oncologist on 7th, as I feel I have too many unanswered questions,  that need answering, before I rush into treatment in July. Given I was so borderline, I need to know, why such an aggressive treatment plan has been recommended and I also need some data on recurence rates with and wothout treatment and if I chose not to have treatment, how they would monitor me over the next 5 years, so that if any rogue cells were detected, I could start treatment then. Feel totally overwhelmed at the moment and feel I'm out of control of my body and what happens to it. Luckily my family will support me whatever I decide. Are you happy to tell me what you decided in the end and what your experience was like? Iterrified of the side effects on my bladder and bowel during the 25 external radiotherapy sessions and potential permanent damage after. Thanks again for sharing your thread.x

Hi Lovetowalk, I read your post a couple of days ago when you posted but hesitated over replying as I wasn’t in the category you asked for which was people in the same position. But having read your latest post I felt I should, and I hope you don’t mind me doing so. My cancer was predicted grade 1 stage 1a, with no further treatment expected, but revised to a “technical” ie borderline stage 2 post op, and radiotherapy and brachytherapy recommended. Although unlike you I didn’t have the chemo bit to think about, I did have the sudden shock of having to consider whether I agreed to the radio and brachy when it might not be needed. I don’t know if you’ve noticed, but there’s a pinned post for Radiotherapy Support and I’d encourage you to maybe have a peek at it. I had 25 radio sessions last year (and 2 brachy) finishing on 19th May last year. I had very few side effects to my bowel (none to my bladder at all) during treatment and no permanent damage to either after. Side effects may happen at the time but most can be helped. And permanent damage isn’t “potential” just “possible”. I was told that the radio aims to cover stray cancerous cells and I wanted that. My oncologist told me by how much radio typically reduces recurrence and I decided it was worth any possible risk. I drove myself to and from every radio appointment (an hour each way) and have never regretted having it. Feel free to ask any questions you may have, either here, on the dedicated radiotherapy thread or by private message. 

Hi Marmite fan59. Thank you so much for responding to my post. Will definitely look at the radiotherapy post as you suggested. I found your reply very helpful and so pleased you didn't really suffer horrible side effects, as this is what I have been dreading, so to hear your story is so encouraging. They want me to start radiotherapy at the beginning of July, but I suppose that as I am 'cancer free' at the moment, if I don't feel quite ready, I could delay a short while. I am speaking to my oncolgist on 7th, as I have a lot of unanswered questions! Chemo will then be something I can think about further down the line, as I don't relish having to deal with any post radiotherapy side effects alongside the inevitable ones from chemo! Thank ypu again for your supportive messsge.x

Hi again, you’re very welcome. Just to say that the guidelines of my own local hospital (Southampton) is to start radiotherapy within 12 weeks of surgery maximum. Mine started 11 weeks post op and my oncologist apologised for the wait and that it couldn’t be sooner, so I took that as it meaning that it was quite important. My understanding of “cancer free” is that it means no obvious active growing cancer but that there could be still be latent cells which were present but not yet active. I’m not 100% sure of that as I’m not medical obviously, but that may be something you might want to ask your oncologist about. Here’s the link for the Radio Support thread: community.macmillan.org.uk/.../radiotherapy-support-thread-inc-brachytherapy

Hi love to walk.

Hi Love to walk,

This too is one of my favourite things to do.

So if you look at my bio it gives my exact dates i had things done.  I too am serous grade 3 stage 1a like you could not take it all in really seemed unreal.  Anyway after my radical hysterectomy, I was told i was only to be offered 3 sessions of brachytherapy.  When i questioned it with my consultant and Oncology dr they said they thought it was not needed.

But as you will see the more investigating you do so many people are advised differently in different parts of the coutry.   In the end you have to make the best decision for yourself.  It is a good idea to talk it through again as you are on 7th I too questioned my treatment but the other way round why had I not been offered more.

Good luck and I hope you get the answers you need to make an informed decision for yourself.

HFF

Xx

Hi Love to walk, I have just finished 25 sessions of external radiotherapy and the side effects were nowhere as bad as they said they  would be. I haven't had chemo so I can't comment on that. The way looked I looked at it anything was better than my cancer spreading. I wish you all the luck in the world.xxx