More treatment required, so disappointed

I have recently had a radical hysterectomy with lymph node removal. I went to see my consultant today to get my test results and I’m absolutely devastated because he’s told me the cancer spread into the surrounding tissue and he now wants me to have both radiotherapy and chemotherapy. I’m so upset right now, I was really hoping the surgery was successful. I knew there might be a chance that I’d need some radiotherapy but chemotherapy was never mentioned so it’s been such a blow. I know I’ll get on with it and do whatever it takes to get better I’m just absolutely gutted.

Hi Emj,

Sorry to hear that you have to have further treatment. My scans showed that my tumour had just began to spread to the parametrium so hysterectomy wasn’t an option.

I am 4 weeks post treatment and found the chemo and radiotherapy very doable. I am feeling fine just a bit more tired than usual.

If you have any questions happy to help.

Take care X

AMF

Hi AMF,

Thank you for your message and for sharing your experience. My consultant told me the side effects differ depending on what chemotherapy drug is used so I hope I’m on the same one as you! I think part of my disappointment is that the surgery was an horrendous experience and I’m still recovering so I just don’t feel prepared for this in any way.

Hi Emj85,
I can totally empathise with how disappointing it is to discover you need to have chemotherapy/radiotherapy when you have your hopes set on being cured through a radical hysterectomy. You’ve been through so much with the surgery it really feels unfair that you have to have extra on top.
I was in a similar situation where I was already for a radical hysterectomy. My surgeon said that would do a laparoscopic first to see if the tumour had reached the margins and if it had they would not do the hysterectomy. Although he said those words I didn’t for a minute believe I would wake up after having a full spinal anaesthetic and not have had the hysterectomy. I was devastated! When they told me I was to have chemoradiation to cure me. But since then I’ve learned how effective the treatment plan is and I start 5 weeks intensive chemotherapy/radiotherapy on Monday.
It will take time for this to sink in. Just remember that it doesn’t matter what route you take as long as you reach the same destination.
Sending you lots of love and strength. I will keep you all posted about my treatment so you can see how I get on if that helps. Xxxxx

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Hi EmJ85

I was in a similar situation back in 2017. I went along to my radical hysterectomy follow up appointment and the consultant started off by paying a lot of attention to my keyhole incisions and offered me a heap of replacment dressings. I was slightly bemused thinking it was much ado about nothing but it turned out she was trying to take the gentle approach to breaking the bad news about further treatment. My surgeon had been very positive that a RH was the way to go so I was very hopeful; it was utterly devastating to be told otherwise and it took a while for me to accept the situation.

It was all the more difficult because my RH had cause a lot of nerve damage to my bladder resulting in total urinary retention so I was having to self catheterise 6-7 times a day (I never did regain full bladder function and still need to catheterise albeit it’s down to 1-2 times a day).

My chemo was cisplatin which is the usual choice - it doesn’t cause hair loss in case you’re wondering. I was told that the radiotherapy is the main treatment and the chemo is used to boost the effects of the radio - otherwise one would need more sessions of radio.

If you have any questions I’m happy to try and help.

Best Wishes

x

N.B. it’s very rare to need to self catheterise long term following a RH - it seems I was particularly unlucky in that sense.

Hi Forest Fairy, thank you for your reply. I appreciate you sharing your experience and I am so sorry to hear of what you experienced. Good luck for Monday! I hope everything goes well. If you could keep in touch and let me know how it goes that would be amazing and so helpful xxx

Hi Jazza, thank you for your reply, I really appreciate you sharing your experience. I’m sorry to hear of your ongoing bladder issues but that’s good news that you have managed the reductions. My bladder still feels a bit odd and I’ve had an infection too which hasn’t felt great at all when everything is so sensitive. Your appointment sounds very similar to mine yesterday. My consultant started by looking at my incision, I had a full abdominal radical hysterectomy and the wound is huge! But it’s all pretty much healed up now. I think you’re right in that he started with that to ease my into the bad news but I have to say he was so lovely and sat and held my hands while I had a cry about it. I’m just so disappointed because he said himself that he thought this would be enough and we even opted for the full abdominal incision so that he could have more visibility. I don’t regret the surgery (though I have at times when going through the recovery because it’s been so much tougher than I expected). That is the chemotherapy drug that he said they’ll opt for and he explained it in the same way that it makes the radiotherapy more successful. I’m now going to see a different consultant to find out the plan and that will be on Wednesday. Can I ask you about the radiotherapy? The nurse that spoke with me after told me that I’ll have to have a CT scan before every radiotherapy session to make sure my bladder is the same size each time, it sounds a bit crazy to be having a CT scan every week day for five weeks!xxx

Hi EmJ85

I had bladder scans before each radiotherapy session. They were done in a side room within the radiotherapy suite; one of the radiographers put some gel on my lower abdomen then placed a hand held device on me which she moved around whilst looking at a screen and could quickly tell how much urine was in my bladder. I think the technology is ultrasound but I just knew it as a bladder scanner. The procedure only took a couple or so minutes.

Hope all goes well for you. If you have any more questions feel free to ask.

x

Hi Jazza, thank you. I had a bladder scan before being discharged after surgery and that makes alot more sense than a daily CT scan! Thank you for clarifying that for me. Xx

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Hi Em, I’m sorry to hear the surgery wasn’t successful. Do you have a start date for chemo and radiotherapy? It won’t be a walk in the park after surgery, but you will get through it. If you have any questions about the treatment, please ask - i’ve just been through it too x

Hi Joix, thank you for your message. I’m still struggling to get my head in gear about the whole situation and I’m so emotional! I have an appointment on Wednesday to discuss the schedule and my surgeon thinks I’ll be starting the week after. I’m sorry to hear that you’ve just been through it, did you have a surgery and then chemotherapy and radiotherapy?

Hi emj85
Sorry you are having a rough ride. I can empathise.
I am coming up to a year post my chemoradiation
It was tough going but I’m.now coming up to being nearly 9 months no evidence of disease. I will have scans next month I’m.praying they are still clear.

Everyone reacts differently to the chemotherapy I got nausea quite bad. . And extremely fatigued :weary:
I am feeling stronger each day.

You can do this! I know it feels like a huge step when you’ve been through so much already.
I’ll happily talk though my experience if you like.
All the best! You got this jemma x

Hi Jemma,

Thank you for your message and words of encouragement. I’m so pleased to hear that you’re doing well! I am expecting the effects to be like you because I’m already struggling with fatigue and nausea so I’m thinking the treatment will make it worse!
I would really appreciate it if you could share your experience if you feel comfortable with that. I think having some information not just from doctors might help me right now xx

I found myself in a similar situation. The only difference being I was diagnosed post hysterectomy. I just wanted to reassure you that the treatment plan might seem daunting but you will surprise yourself at how well you cope. If you have cisplatin chemo you shouldn’t lose your hair. Good luck going forward.:two_hearts:

Hi Ann, thank you for responding to me. It is all very daunting and I’ve definitely felt quite miserable and disappointed. I’ve had an appointment with the consultant who will be organising everything and I like her which is a good start! Although I’ve been given alot of information I feel a bit more reassured although I’m also having brachytherapy too which I was hoping to avoid xx

Dear EmJ85,

This is a really difficult time for you and I really feel for you - to go through hysterectomy plus lymph node removal only to find you will still have to go through chemo radiation is particularly hard. Unfortunately this happens - your team made the best call they could for you, but there is always a chance that an operation will not get EVERYTHING, and if it doesn’t you will need to treat the whole body systemically. The good thing should be that there is no massive tumour to deal with, and the treatment should be very effective indeed. I’ve heard that you can only have one round of radiotherapy, otherwise it’s too damaging to the body, so I guess they are just going to go for everything and make sure you’re CURED.

This is what we’re all hoping for. I found the chemo and radiation exhausting, and there were times when I felt I would never be better or feel alive again. Well I’m 9 months post treatment and apart from feeling nervous (I have my 9 months follow up next week) I am now feeling better than I’ve been for a long time. You can get over it. You won’t get over it if the cancer remains - that’s what I told myself and I expect others do too! Some ladies go through the whole chemoradiation thing and feel fine - there was one lady like this while I was having my treatment. But it’s not a competition - don’t worry if you feel tired. You’ll get through it and we’re all rooting for a successful treatment programme and a fine conclusion from this horrible episode of your life. X

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Hi Jacks,

Thank you for your message and for sharing some of your experience. This is how I’m thinking about it, it’s a disappointment but I’ve got over that a bit now and I just think that this is what I need to do in order to get my life back and you’re right, there isn’t a massive tumour there anymore to deal with and that should make thinks much more effective, I am hoping!! I’m two weeks in and it’s been a struggle, I had a reaction to the cisplatin and I’ve been switched to another chemotherapy drug and I’m losing my hair unfortunately ( but it is what it is! At least it’s winter and I can wear wooly hats!). I’m definitely exhausted all the time and sleep is becoming a bit of of struggle, mostly because the radiotherapy is effecting my surgery site and my belly has swelled up and is super sore but painkillers are helping. I finally have the start date for brachytherapy too and that’s the 14th December. I’m very much hoping I’ll be all finished by Christmas and I can have a rest before tests in January. I’ve seen some ladies in my Chemotherapy unit that seem to be tolerating it all much better but you’re right, there’s no point in comparing because I don’t know what their individual journeys are like and it’s not helpful to compare, it’s just a case of getting through it all. I think the hardest thing for me is travelling to the radiotherapy hospital everyday because it’s two hours a day and it’s exhausting! (Not that I’m the one driving!). I have heard that radiotherapy can only be done the once too so fingers crossed it does the job!
I can completely understand why you’re anxious with your check up coming up! I would be completely the same and I think that’s natural to feel worried and anxious. I really, really hope it goes well for you and you have a good outcome, please do let me know!xxx

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