Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

@MrsMontyD
Thank you very much for your helpful suggestion.
😊

Rant on @Kins2 this is disgraceful! We understand the scanxiety and I wish the hospital staff did too.

@Kins2 8 weeks and no answer is shocking, I'd definitely be contacting pals to see if they are able to help

Yes you must contact PALS.

i have my CT scan at 1530. Im petrified. I cant get my head around the fact haemotogy have told me its secondaries. Every time someone asks how I am Im in bits. Ive also got to go to my work ward after which Im dreading but Im meeting a friend there whos going to take me for a pub tea. Do you say tea or dinner? Ive been in London long enough I should be calling it dinner 😃

Hope this afternoon goes smoothly @EachandEveryone - and enjoy your food later!

@EachandEveryone I am in south wales and say tea!

Good luck later on, have you got a results app yet?

Just on a train back from visiting my parents and trying to get my mum up and running on my previous phone, her first smartphone.
@EachandEveryone will be thinking of you this afternoon. So sorry to see your update. Hopefully they get the results quickly. I say dinner despite having grown up in the North East. I've been in London too long!
@Kins2 that is shocking. I hope PALS can help.

Vinorosso74
Thank you. I Really hope so.😊

Oh no, I’ve just scrolled back and seen the news about Bridget. She was such a supportive voice on these threads and her personality shone through

@Kins2 - that's dreadful. I understand where you're coming from - I had a liver MRI after a suspicious CT scan and I was in absolute terror waiting for the results (and I got mine through in less than a week).

@EachandEveryone - thinking of you. And definitely 'tea' for me, on a day to day basis - grew up in Yorkshire, and have lived all over, but always tea when we are at home, even when we used to eat at 9pm. But I do say 'dinner' when we go out. I think properly posh people say 'supper' though - but that means a warm cup of milk and a rich tea biscuit to me!!

fudgecat
Thank you so much for your support. As well as worry, I'm now frustrated!
I hope pals can help. 😊

Pub supper down here in the posh South West 😂

Thinking of you @EachandEveryone hope the scan was okay and not too noisy or claustrophobic.
I’m floating along today. Steroids got the washing up and laundry done then Iwatched The Crown till it got too depressing. Now chilling and pain free on the gabbies.
Best wishes to all
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Tea rather than dinner (which is what you have in the middle of the day on a Sunday) and supper is a hot drink and a digestive for me too! We had something called high tea, I think that might just have been a sandwich at 5 pm or something!

to everyone waiting for results.

I am no further with deciding whether or not to have chemo 6. I was never totally convinced there was any cancer left in me in the first place, though can never be sure, and I'm starting to get more worried about adverse effects due to a cardiovascular condition than I am about the cancer. I've seen research that says 5 is as good as 8, but then all other research has been on 3 or 6 cycles and the evidence isn't robust. My hospital and the Royal Marsden said 4-6 and I've done 5. Has anyone else made this sort of decision? How did you balance it? I feel I want to say no but it's scary!

Hello, I have just found this thread.

I was diagnosed with stage 3 anal cancer earlier this year. I’m now close to 3 months post chemo & radiotherapy. My first check up scan will be in Jan.

On top of all that I’ve also just been diagnosed with B12 and iron deficiency. Little wonder I have no energy.

Hi @SierraSapphire oh these decisions are always a headfuck aren't they. I ended up just having 5, not 6, back with my primary cancer in 2011. It was supposed to be 6 & I just could not get an answer from my oncologist about whether it was really utterly necessary to have the last one, she was maddening. I still remember her saying "it's not not sub-optimal" ... try getting your head around that. Basically, they don't know & I wish they would say so! I was just too ill to have it, I was half-dead so I went with my instinct that I had had enough & that was that. They didn't have the models around then so I had no idea of the % benefit but I bet it was tiny: I was pre-menopausal & had no lymph node involvement.

It's hard to see the wood for the trees when you're in it, but I would personally say go with your gut, which is telling you no to the sixth. I think there's a good reason to be more worried about a known cardiovascular condition than the unknowable nebulous benefit of zapping cancer cells that may or may not be there and may or may not be already zapped. If its 4-6 then 5 is perfect & I would go with what the Marsden say.

Thoughts to everyone having such a shit time waiting for results, dealing with bad news, & sorry you find yourself here @Gemforfreee but I hope you can get support & offload whatever you need to. Scanxiety SUCKS. My next scan should be at end of December, I hope Christmas & New Year will take my mind off it rather than be ruined!

ahh the gabbies @TopOfTheCliff , the good old gabbies. That made me laugh. Enjoy. Oh & yes The Crown is getting depressing isn't it, but I feel I've got to get through it before I am allowed to have fun with The White Lotus?!

Sierra I had a similar decision with my Pax - was 12 weeklies and wasn't sure as I had really bad neuropathy and steroid effects to do all 12 or not. But in the end I did calculations and did it. Largely on I was on an equivalent of 4 rather than 6 anyway which my oncologist said was fine but was a bit controversial and when I looked it up 4 did seem to have bit lower success rate but you have to balance with the risks too. And I had been reduced to 90% dose. And I read a study if you do 85% or less of treatment success rate goes down a lot. My oncologist said 1 to 3 have very little benefit and from there its proportional benefit but 11 and 12 are similar benefit. So it was borderline but my oncologist said she recommended 12 rather than 11. I did some calculations and went for it. I also thought I am already stuffed with neuropathy its not going to make much difference and it didn't. Pax I had already chosen due to the very low risk to heart so that wasn't a concern. In end neuropathy about 4 months on peaked for 2 months or so and worsened and went quite numb on right side but now its just under the operated arm really. My eyesight, brain and teeth feel more permanently damaged but that was already like that at 11.

In your case I might stop at 5 if they are saying 4 to 6. But if it will always bug you then go for 6. Though I decided just make a decision and don't think about it too much. I was also cancer free on scans before the start of visible cancer and wandered if whole thing was a waste of time, my oncologist said there was a 94% chance it was which was frustrating but the other 6% were dead.

Thanks @mowly77 for the thoughts. It's not like chemo is making me feel incredibly bad, a bit of nausea and I'm anaemic so tired, I'm just feeling I can't bear another cycle. I know it probably only adds 1-2% at most to risk of recurrence, and I actually think that would be counterbalanced by being able to be in a less stressful routine, exercising without it being stop-start, eating better, a targeted supplement regime etc. but I'm turning down radiotherapy (only another 1-2%) and I'm incompletely staged for both cancers, which could add another 1-2%. And probably the research for endometrial cancer is where breast cancer was 20 years ago, a real lack of detail, large categories that clump together different grades and types, and contradictions - my oncologist has a nice line in face pulling and saying "we really don't know"! Similarly, I don't actually know that chemo will affect cardiovascular condition, because there is a lack of research too. There is so much less known about everything than I ever expected there to be!

Thanks as well @Silkierabbit - posts crossed. That's interesting about your oncologist saying cycles one to 3, didn't make much difference, I was told the opposite by somebody and when I asked my oncologist which treatments made the most difference he said, "we just don't know"! When I read the first part paragraph I thought, yes I should probably just go for it and get it over with, it won't make a huge amount of difference. I guess having one more, and after I read the research around ovarian cancer, I did drop to just carboplatin for the fifth, and not the paclitaxel, as I was having real problems with my veins with the paclitaxel, I seem to have escaped neuropathy, but I have definitely got short-term memory issues. I'm absolutely fine with focusing on work, which is reassuring, but I regularly can't remember what I did yesterday! I feel as though other than the veins thing I felt just as bad with just the carboplatin this cycle as I did with the paclitaxel, although that could be because I had to rush straight round to my mum's and then spent the next 24+ hours sorting out her medical emergency so didn't get a chance to rest immediately or do the things that I normally do to make myself feel better. I've got two weeks to decide. I will probably do it in the end for, as you mention, the psychological peace it's more likely to give me!

That's one to three of the weeklies almost no benefit so equivalent of one three weekly before benefits start.

I did it in the end partly as I thought it might niggle at me if I didn't finish the course. It was very marginal though.

I wonder whether there's something specific going on psychologically about the last treatment. I could be thinking, "Yay, there's only one more to go!" But I'm not.

Yes I think people without cancer expect you to be happy treatment is nearly ended or ended but I found it took a while after before I felt happier and certainly wasn't at 11 out of 12. At that stage I was worn out and fed up and hacked off with chemo and cancer. I did feel somewhat better after 12 as it was over and I had done the course and I think doing 12 meant like I felt I had finished the race whereas 11 I would have felt like I stopped 100m before the finish line, probably no impact on my health but psychologically like I have not finished and I think I would have had a niggle should I have done 12. Though there are always niggles with treatment and best after research to shut them down if it gets to pondering on it all day as no-one knows the answer for an individual. I then felt a bit better from no steroids but neuropathy worsened then radio which was so easy after chemo but in addition and then hormone tablets on top and all 3 made me feel rubbish before easing. Now I have issues with memory, eyes are blurry, hair is half wrecked, teeth feel weaker but dentist gave me extra fluoride toothpaste which has helped and get mood swings on hormone tablets but physically a lot stronger. Mentally I am OK with the cancer now most of the time.

After the chemo, I'll be finished and that will be that other than scans. I think I'll always have a slight worry about whether I should have done the radiation, but the statistics seem to indicate that there's only a minor benefit and there's no difference in terms of overall survival, whether you have it straight away or whether you wait for a recurrence and have it. Obviously, I am not planning for a recurrence! I do think it will be a little weird to be just stepping away, but I am paying for some support in getting my health and my life back on track so that I am doing everything I possibly can to reduce the risk of recurrence. I still have a complaint to make against the hospital too.

It’s such a hard decision to make. As you know I have pretty much decided to skip the pax for my last session. My ovarian is a higher stage than yours but also low grade so there’s a similar decision around it and little real evidence. Although mine involved nodes so I am more likely to recur than you I think.

I have dreaded each session more and more. Realistically they haven’t got harder until this last one which definitely kept me tired for way longer, but I had a chest cold anyway so maybe that’s why. I am just DONE with pax. I despise it. It has affected my eyesight and hearing, my hands and feet, and I just don’t bloody want any more when they can’t say if it really adds any benefit anyway!

Equally I’m now terrified that deciding this will be something I regret. Realistically I’ve done 4 pax and will have done 6 carbo so I don’t think that one extra taxol session would make any measurable difference given the overall low chance of benefit there is anyway for low grade.

I hate the worry though.

I’m interested in this discussion. I never countenanced missing any doses because I am so competitive. Set me a challenge and I want to complete it. Give me a percentage of successful outcomes and I want to be in it. 40 percent rate of Complete Pathological Response? I want to be in that gang! So I take everything going, stick to the highest dose possible, trudge onward towards the winning post, and hey look at me the Top Patient! Battered and scarred but holding that imaginary trophy. So now I am going for the double award. CPR twice? You bet. I think I have been quite lucky that apart from excruciating joint pain I haven’t been too bad this time round. No real gut issues, not much bleeding from either end, hair loss that I can cope with, and my arthritis has settled while I am on chemotherapy. Also I don’t have to work, my DC are grown up and I have a lovely DH looking after me. If I had to be fully functional I might well cut short the course but I can rest and recover when I need to. I am lucky!

Having a lazy day today . Sending regards to all.
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