The other side of Chemo/Radiotherapy?

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I've been diagnosed with Stage 3C1 cervical cancer, so with pelvic lymph node involvement. My oncology team are optimistic for a cure which is great and I've been largely positive about the outlook. I'm halfway through a 6 week run of weekly chemo before starting 5 weeks of Chemo weekly and Radio Mon-Fri. I had an oncology appointment yesterday and was left feeling overwhelmed with negativity about what the second stage of treatment will involve and all the possible long term consequences for me. I might never be the person I was before this diagnosis and and I'm anxious and stressed about how I'll cope, what will happen to my relationship etc etc. If any lovely ladies would be willing to share their experiences of treatment (good and bad) this might help me gain a bit of perspective and context. Thank you. x

  • Hi  and welcome to our group

    I’m sorry to read of your diagnosis but glad you’ve found us here in the group. We’ve had some ladies join recently with the same diagnosis, so I hope they’ll be along to post their experiences, and we’ve had a number of ladies at the same stage who are successfully through their treatment and out the other side so I hope you’ll hear from them too. 

    You haven’t said what chemo you’re on at the moment, but typically the chemo which is used alongside radiotherapy is Cisplatin, which is given at a low dose to enhance the effectiveness of the radiotherapy.

    I had stage 2b cervical cancer, so went immediately to chemoradiotherapy. It can be daunting to read of the potential side effects of treatment, but you need to be advised of them in order to give informed consent to the treatment. However, they are potential effects rather than definite and you may not suffer from them at all, or certainly not all of them.

    I had no effects from the chemo-it is a long day in the unit, but I was never sick or even nauseous. I did have some side effects from radiotherapy in terms of how it affected my bladder and bowel, but these effects subsided quickly after treatment ended. They kicked in at week 3 of my treatment, where I started to have diarrhoea and cystitis. These are probably the most common side effects from pelvic radiotherapy, and I was also very tired.

    The best thing to do is tell your treating team immediately and you will be prescribed something to help-I was given cream and Immodium which helped. However, it’s important to remember that not everyone suffers with these issues. 

    It is quite tough to go through the constant hospital trips, but before you know it, it’s over and done with. I had an mri scan 3 months after treatment which sowed a complete response, and I was classed as NED (no evidence of disease). I was unlucky in the sense that my cancer did recur a few months later, but that 2nd diagnosis was in 2019 and successfully dealt with. 

    Please try and keep at the front of your mind that your treatment is being done with curative intent, and try to remain positive that you can cope with it. This has been a blip for you, being given all the possible negative effects, but please try not to focus on that before you start the treatment. I had 32 sessions of radiotherapy, and think I recovered well from it-no skin problems at all, and my bladder and bowel settled quickly. I had no lasting effects from any of the treatment, and felt well in myself after it was finished. There are lots of other positive stories within the group too. 

    Please keep us posted as you go along, and if you’ve got any questions do feel free to ask. We might have advice which can help, having been through it ourselves. My treatment finished 5 years ago on Christmas Eve, so I hope that might give you some positivity and hope! 

    Sarah xx

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    Cervical Cancer Forum

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  • Hi  

    Just thought id pop a little comment in. Im not quite where you are yet. Ive been given initial diagnosis of stage 2 with lymphovascular Invasion present so I have another 9 days to go until my pet scan and 16 days til I get my results and treatment plan. I am all over the place at the minute, one minute positive and another minute im at the opposite scale and thinking the worst outcome possible. I dont think anyone will ever be the same after receiving a cancer diagnosis but if it helps you, im thinking the person I'll be if I beat Cancer is a much better and stronger person for overcoming something so Sh*tty. You should be very proud of yourself for fighting through the treatment you have had so far. Keep going, if you can get through this, you can get through anything. Sending positive vibes your way x

  • Thanks, that's really helpful to hear your experiences and much more in line with my expectations.

    I'm on Paclitaxel and Carboplatin at the moment and aside from some fatigue which I think is more down to some of the side effect management medications than the actual chemo and a weird taste for a few days its been ok. Doing scalp cooling and holding on to most of my hair so far as well.

    It will be Cisplatin once a week for the 5 week session after this along with 25 radiotherapy and then some Brachytherapy to finish off. The oncologist was just so negative with everything bad that could happen yesterday and it was totally overwhelming. I know they have to give you worst case scenario to get consent, but geez, a little context would have gone a long way so thanks again.

    I also have to contend with 130 mile round trip for treatment which is insane so I will have to stay away from home for at least some of it, which is adding massively to the stress. I love our NHS, but this is not good.

    Glad to have found this group and grateful for support. So good to hear how well you're doing. x

  • Thanks so much for your reply. I can totally relate to to rollercoaster you will be experiencing... its on another level when you get that diagnosis. I was diagnosed at the end of October (very unexpectedly) and started treatment on 1st December and even though there are still massive highs and lows, it does get easier. For me the fear of the unknown has, so far, always been worse than the reality and really hoping it stays that way.

    its so helpful just to hear how others have experienced things.

    Thanks for the positivity, much appreciated, and sending this right back at you. Stay strong. x

  • I haven’t had the chemo mix you’re on, but if you’re coping well with that, you should find the Cisplatin straightforward. And it doesn’t make you lose your hair, so doesn’t require the cold cap. That’s a really long hospital trip for you-I thought my 70 miles plus round trip was bad enough as it took hours there and back every day with traffic, so I imagine it would be very difficult for you. But it will be tough being away from home too. Does your hospital provide any accommodation?

    It’s really unfortunate that some oncologists have a less than positive attitude when they’re speaking to you-I’ve seen a few different consultants over the years and some are much better than others. My very first one and his registrar sometimes really scared and upset me-they don’t understand that we’re hanging on their every word. I think there’s a real benefit in speaking to others who have been through this to counter some of the negative stuff we’re told, so it’s good to concentrate on positive stories, 

    I had the extra radiation because I wasn’t able to have the brachytherapy, but lots of the other ladies have had this done. It’s the final hit to this cancer and can be extremely effective. 

    Sarah xx

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  • Hi  and welcome to our group

    I’m sorry to read you’ve had a diagnosis too, and completely understand how much your thoughts race, especially when you don’t have all the information you need yet. The waiting between appointments, scans and results just seems endless when you just want to get on with treatment but waiting is a big part of the whole process. I just tried to keep busy and distract myself as much as possible so it wasn’t consuming my mind all the time. But it’s not easy! 

    I think what you’ve said about not being the same after a cancer diagnosis is very true-it does change you. But equally I found an inner strength I didn’t even know I had, which has helped me over the last 5 years. You can find that strength too.

    Please let us know how you get will be good for you to have a “buddy” within the group like  going through things at roughly the same time as you can be good support for each other. 

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm