Radiotherapy

Hi Nicky,

I'm on the same pathway. Have had four pre op chemo. I had COVID in the middle which has left me breathless. They have done loads more tests which the results are ok for. I'm going for my op on Tuesday and expecting to go back on chemo after a few weeks. Like you I don't won't to. The first four rounds were bad enough. I think I will have an appointment with the oncologist later on and expect a decision about chemo will be made then. 

Good luck going forward.

Best regards.

Geo.

Thank you Geo. I've been following you  as we're on a similar path. Wishing you luck for your forthcoming operation 'get rid'. I hope all goes really well for you. I have a raft of appointments in the coming weeks too... scans, another pre-op with cardiology as they want to monitor my heart under stress (the bike test showed an anomaly, although the echocardiogram showed nothing wrong), plus another oncologist appointment. The chemo is tough, isn't it? Absolutely horrible. I'm currently in the fatigue stage again, and wondering how hard post-op chemo will be, as I feel like I've reached my limit at the moment. Time will tell, and I expect you're also of the opinion you'll take what you're told, but it's a difficult one. Please keep us posted on your op progress too, it'll soon be over and you'll be on the other side! Is yours going to be keyhole? I've been told mine is, and is at Southampton Uni Hospital. I'll be in good hands, thankfully. 

Hi Nicky, 

Your right I'm not looking forwards to more chemo, but if that is what they say I need I'll do it 

Knowing there is some risk to the op makes me very nervous. I've had other operations but nothing this intrusive or long. I don't want to be morbid or negative but what if the worst happens? How do you prepare your loved ones just in case you don't wake up. I don't want to entertain the idea but know it's a possibility.

I've been discussing it with my wife and making sure things are in order. I know she doesn't want to acknowledge the possibility but can't ignore it either.

Hi NickyF

I empathise totally with your situation.

My dad is currently at this very crossroads, whether to have post op FLOT or not. He is 7 weeks post surgery and we met with the oncologist only yesterday to discuss the next stage of treatment. I found the oncologist was very honest about it saying that it would be harder and any side effects that dad experienced before would likely be worse and could last longer. Not nice to hear, but there you go. Dad's gut reaction was to say no more chemo.

Dad lost his taste by 4th round cycle last time so is really dreading that part as well as the tingling sensation in his fingers and toes. We were told this may even become permanent!

However, he did say that if dad decides to go for chemo, he would reduce the dosage by 25% and would take it one cycle at a time. If dad decides 1 cycle is enough then so be it. I feel knowing this has put dad in a bit better frame of mind about it. However he has yet to make his final decision. He booked the chemo in for 10th October which gives us a few weeks to prepare ( mentally and physically). Dad is obviously still recovering  from his op, so I guess if we try to increase the daily walks and get dad as fit as he can be at this point, then that can help a bit. It must be an awful decision to make though.

On a very positive note, dad's post surgery results have come back and look very good. There is no further evidence of cancer and none detected in the 38 nodes they removed. All the doctors and oncologist have commented how good these results are. The pre op chemo worked extremely well, reducing the tumour by 80%!! We are obviously thrilled. I feel the doctors are keen for him to do the chemo now as it would be the last little part of a gruelling journey, but It's totally dad's decision, and one that has to be right for him. It's just not an easy one. 

it’s only natural  I think the worry of not coming through the op is something we all go through  prior this big operation. I found once in the hospital I just wanted to get it done asap ! 
these guys know what they are doing 

post op chemotherapy is hard but once you complete them you soon start to feel better and thankful that you have done them all knowing you have done all you could do to fight this beast that has haunted us all . 
just try to remember that no mater how bad  the chemotherapy makes you feel  it will pass ! 
keep a strong mind and good luck to you all  . 
mark 

Ah bless you, the anxiety must be huge for you right now. I had a hip replacement just before my OC diagnosis (literally just 6 weeks before, and also my 2nd replacement in just 18 months). My body has been through a lot this year, but honestly, although I still have ongoing problems with the hips that I will sort out later, the operations themselves were fine and recovery by 6 weeks was good. I know our OC op is more serious, but wound wise is a lot smaller. The after effects, however, will probably be more traumatic, but if we listen and do as we're told, small portions, little and often, and always being aware of these permanent changes, I'm sure positivity will pull through. You sound like you have a good support network around you, and you WILL get through this. You've been amazing so far, and documenting your journey has helped me personally enormously, and I thank you for that. You will absolutely be alright before long... by Christmas you will be cured. I know that's my focus and is helping me mentally. I have my post-op appointment on 27 December... and not even had my op date yet! But focusing on it being over by the 27th has given me a goal.

Hi, and thank you for your reply. That's been really helpful. My 4 round chemo journey so far hasn't been without hitch... after round one I had a raging tooth infection, was neutropenic (count was actually zero) and admitted to hospital for a week. I had the tooth out there, and recovered well thankfully, but my oncologist reduced subsequent doses to 80%, bluntly saying "If we continue giving you 100% the chemo will kill you". So I've been quite scared since! However, although the effects have definitely been cumulative, it hasn't been quite as bad as that first one, and no more dramas. I did have my last round postponed by a week as I hadn't recovered from the fatigue though, and she reduced the Docetaxel one to 60%, as apparently that is the one most likely to cause extreme fatigue and side effects. I can't say I've noticed any difference though! I know for sure the tumour size is reduced though, which is fan-bloomin-tastic! I've been eating absolutely normally since the end of round two, which I'm loving. To hear your dad had an 80% reduction was brilliant, and has really chirped me up :-) I have my scan in just over a week, so hope mine will be good news too! That's also encouraging what your dad's oncologist is saying to him, and I feel less worried now... so thank you for that. Aren't they amazing people? Tailoring the treatment to what's best for us! I'll just have to heavily rely on my oncologist, and trust her greater knowledge... and hope the post-op mop-up isn't as bad as I fear. We all have limits, but the urge for getting better and getting that 5 year clear I know personally will push me further than I can imagine! But it won't stop the dread and anxiety. Please do let me know how your dad gets on? I wish him well with the end of his treatment, he's done so, so well to come this far.

Thank you! This is the positivity boost I need to read :-) My inner fire and determination to reach that 5 year clear goal will definitely keep me going. 

Thank you for your kind words. I imagine you would feel frightened when your doctor tells you 100% could kill you! That's pretty direct talk. Having said that, the surgeons/doctors/nurses etc are all fantastic at what they do and we couldn't be without them!

I know dad has had first class care from everyone he's had contact with from surgical to emotional. I'm sure it's the same for you.

Keeping a positive mindset helps and I know dad has struggled many times as he says he feels his body has changed in so many ways and that is undoubtedly a hard adjustment (especially at 71!) I'm so proud of him for all he has endured so far and will continue to be there until his treatments finally ends.

I wish you all the very best going forward with your surgery and the post op chemo. You will be in great hands. The medics know exactly what they're doing. Take each day at a time and do take care.

Hi NickyF

It sounds like you have the determination to give it your best shot!

My husband is 76 and is 10 weeks post op. He managed the full 4 cycles pre op (it was hard but he got on with it), and following the op, he was told there's no sign of cancer which was brilliant. He found the op less gruelling than the chemo and was home in 9 days and recovered well.

He's just started his post chemo FLOT and it's floored him. I think they went in at 100% as he was doing so well, but the chemo induced diarrhoea was bad and he ended up in hospital. They found he was neutropenic too (0.1!) and developed an infection, but....he's been in for 3 days and they're sorting him out, with great attention. Having said that, everyone is different, and you've already been through plenty of side effects - so maybe you'll be fine.

Hope it all goes well for you - stay positive, and as CMJ78 says, trust the medics and just keep asking questions.

All the best.