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.

I suppose it depends on your diagnosis Top, there's a lot of uncertainty in mine and the chemo more reflects this than my actual diagnosis. It's entirely possible that there is no cancer at all in my body, so chemo could be only detrimental and could have zero benefit. If there was firm evidence that it was in my lymph nodes instead of a theoretical it could be there microscopically (my hospital said no LVSI) then I might feel differently, but the endometrial is low risk because it's grade 1, and the ovarian although higher grade was staged at 1a and was a tiny dot on one gland with my CA125 as 4 before I even started, so I've never been 100% convinced about chemo. You're right though about the pressure to do other things, I'm single so still having to keep the household going (though DD left for uni this year), and I'm trying to make sure my business at least nominally stays afloat. If that collapses (and I still have Covid debt) it will probably be worse for my health than missing the last chemo when the evidence suggests 6 may be no better than 5. It's so difficult to weigh up those very different things against each other, which is why I'm agonising so much!

Ah see Top, I have 4 children at home and am back working full time. Plus like Sierra there is so little evidence of benefit for low grade that I really wonder about what I’m getting from it. In America Chemo is no longer offered as a standard treatment I believe, it goes from surgery to hormone therapy and chemo is held in reserve for the future. Here there is still a lot of “we don’t know” and I had the option of carbo only or the pair combined. I opted into the pair combined to tackle any cells while they were down but I’m now wondering whether all the negatives are worth this last dose of massively toxic taxol. I don’t think they are. The recurrence rate is huge for me regardless of chemo, only 10% of people don’t recur.

Sierra, was your ovarian cancer classed as a microinvasion even though it’s stage 1a and was your capsule intact? Did you have stromal invasion. I’m curious because of how you’ve described your cancer as a tiny spot on one gland. And just one last thing - is your chemotherapy for the endometrial cancer as it’s very unusual to treat anything less than OC 1c with chemotherapy.

I haven’t come across anyone else with stage 1a OC.

Hi @MrsThimbles - you have 1A OC too? We do seem to be quite rare! I was lucky to have endometrial cancer, I guess otherwise the ovarian wouldn't have been found.

The OC was only found when I went to the Royal Marsden to get a second opinion about treatment for the EC. The Royal Marsden staged me at 1A and said there was no sign of breach of the capsule, and it does say in pathology report, a single gland. I do have a STIC in my fallopian tube, but they describe this as "almost a pre-cancer" so it doesn't seem to change the stage, but I'm a bit confused about that. There is some uncertainty because nothing else was sampled because they weren't expecting to find anything, but the RM thinks there's only a very small chance it's spread. Scans were negative, but of course that doesn't mean there aren't small particles. I don't think they mentioned stromal invasion. The guidance that I have seen does seem to recommend chemo as an option even for 1A because it's high-grade serous, though the RM said it was borderline. What was your situation?

My EC was 3A and the NHS recommend chemotherapy for 3A, but they lump stage 3s together, most of which are a higher grade or more aggressive type. I found recent research and guidelines that now indicate that if it's grade one, endometrioid, LVSI negative, and through less than 50% of the myometrium, then chemo is no longer recommended. My original hospital said I was LVSI negative, but the Marsden said they could be some focal LVSI in one place but they couldn't actually tell because the slides were smudged. My reading is the focal LVSI doesn't make a massive amount of difference to the outcome. On its own, I wouldn't have had chemo for the EC, it was the fact that I had both cancers and I ended up feeling completely traumatised by having to get a second opinion in the first place and then finding out my original hospital had missed things and delayed everything so I just went ahead with it in the end feeling a bit panicky. I'm still not entirely sure it has been the right decision, they're just so many unknowns though in my situation it's all guesswork.

iI had two letters today, one from the GPS surgery saying sorry about your diagnosis, here’s what we can offer, which I thought was pretty helpful. The other from the hospital, being measured and scanned next week and radio/sabr ti start two weeks after. Apparently the scan will tell them whether sabr is suitable ( depends on where the nodule goes when I breath) 3/5/8 sessions or the more usual radiotherapy which will be 20 sessions.
I dem to have been lucky, all appointments here are done no later than two weeks apart.

seem to have!

@SierraSapphire I can quite see why in your situation you might decide the cost benefit doesn’t justify carrying on with the final dose of chemotherapy. When is it due?

@Gilead it is good to hear that things are moving forward speedily. I hope you will feel better once you know the plan.

I am plodding along here. I daren’t make any plans for the next few days until I see how I feel.

Top

Morning everyone. I'm interested to see your thoughts about the chemo cycles etc. Out of curiosity, how have you found the research papers looking at the benefits of different numbers of cycles etc? I tried to find evidence for my regime (I'm on 3xEC then 3xDocetaxel, and from the BCN forums quite a few people seem to be on 4 of each for adjuvant therapy for BC and I wondered why, given that my NPI score was almost as high as you can go.) But just googling didn't really get me anywhere.

My hair loss is getting annoying now, so I have a friend lined up to buzz cut it for me tomorrow. I want to bake Christmas cakes at the weekend and don't want to be finding hairs in them on Christmas day. I have bought a cheap Amazon wig for emergency use for zoom.

Are you looking at Google scholar @dotty2? I'm a researcher and so am used to reading academic papers, which has helped. I've found the individual ones useful to pick into the finer details of my particular situation, though papers have variable limitations. Then there are meta-analyses or systematic reviews, or summaries of all the research by various professional bodies that summarise everything so you can then pick off papers relevant to you. There are definite gaps though, for example I've found a smaller study that recommends five chemo cycles for OC but then all the bigger trials since have tested six, so to what degree can I trust the smaller one? There are certain large randomised control trials on which NHS protocols are based, but if you are an outlier in whatever category you're in, as I am, what they recommend isn't necessarily best - for one of my cancers the professional guidelines have changed but this hasn't worked its way through the system yet, I had to discover this myself. It's hard work though, I must have read over 100 papers, and more abstracts. My oncologist now says I know as much as him!

Thank you - I have tried Google scholar but have been a bit overwhelmed. I think I don't know enough to refine my search terms sufficiently. I guess if I thought it made a material difference I might persevere a bit more - but really, it's just that I like to know what the evidence base is to satisfy my analytical instincts. I work as a consultant (and have a PhD, but not in a science subject) and quite a lot of my work is research-based, but it tends to involve finding out just enough to understand the context and to be able to ask the right questions. More like a journalistic approach than proper research, I suppose. 'Just enough' isn't really what's needed in this context!

I also used google scholar though I always discussed with oncologist. I also researched any econometric type models could find as well as I do those for work and academic research. The reports do tend to have a high statistical content and a lot of technical terms so I was always double check anything with an oncologist though mine confirmed I was right on everything and said she had learned a few things too, she is very polite!. Though some areas are much easier to find research on, things which are more common cancers and more common treatments and there were data gaps and also some data is very old / regimes have change. It can also increase anxiety doing this though and after a while it does your head in as your mind thinks should I do x or y, x, no y, no x, no y, look up more argh. I am still glad I did it but you need to make sure you understand it (if you can't I would leave to oncologist as its very technical), check its research paper (though they are quite different format to the random crazy cancer claims), check with oncologist as they can confirm if you are right or wrong and also sometimes have their observations and unpublished data. But at end of the day sometimes you just have to make a decision and get on with it without all the evidence you need. Another thing I found useful was asking women who had been through things what they recommended and thought. The oncologist advice is based on longevity rather than quality and emotions and its a balance.

I'm here @AGreatUsername, thank you . Been recovering from the spine op and adjusting to life as 'a sick person' or maybe more coming to terms with. This is before treatment for the cancer starts.

Will find out about my plan soon but they need my back to heal first. Think it's a bit of radiotherapy then 6 cycles of chemo and injections. In spite of all the chat here I am bloody desperate to get started.

@TopOfTheCliff glad the pain has gone.

I've planned my first hospital visit around lunch in a nice bakery. I've bought new trainers and tracksuits for when I can tramp about outside again. My parter sprung into action when I was in hospital and got loads done in the house

I've kind of framed this next 6/8 months like a crap version of mat leave. Don't really know how else to approach it.

I haven't had a 'proper' meeting with the oncologists due to the panic about my spine but any conversations I have had have been positive and talk about long term/indefinitely etc so I'm just focusing on that until someone tells me otherwise.

I can join in the detailed chat about drugs and side effects once its all happening. I do have some steroids that can give a wee buzz @TopOfTheCliff but wldn't mind a bit more.

Thinking of you all. Much love

Hi all,

Has anyone here had bisphosphonates, and then suffered with Osteonecrosis, specifically in the hips? Just looking for some advice or experiences as I think I might be heading that way 😞

@ShuttersThatShut it's on the plan that I'm going to be having that as part of my treatment, they said about the risks of dental work but nothing about hips. What symptoms do you have?

Hey @fudgecat I've just had two infusions of it so far, and I was also warned about the risk to the jaw, but nothing was mentioned about it in the hip area. I have had some hip pain for several months now, had an MRI as my oncologist was initially concerned about bone metas, but scan showed no sign of cancer (phew !). I'm now being referred to an Orthopaedic surgeon to look at the bones for signs of necrosis.

Looking at side effects, hip problems should be explored as it is listed as an uncommon side effect.

Oh @ShuttersThatShut I have my second infusion on Wednesday. Had no problems with first one, 🤞🏻🤞🏻🤞🏻for next…
Have osteoarthritis in knee, but that was there previously, just not diagnosed.
Teeth not great, but no problems with jaw, no pain in hips that I’ve noticed,did not know that might be an issue.
it really is just the gift that keeps on giving!!

I’m having my first infusion tomorrow, it’s been delayed by months because of the damage to my chest. I also am furious because I was told to have FBC and calcium blood tests and today they announced I should have had U&E’s as well. They are doing it tomorrow before we start but last time I had
chemo there, the pathology lab had been relocated so needed to do bloods a few days before.
I’ve cleared my day tomorrow as I have no idea how long I’ll be there (and an hours travel each way).

So I start EC chemo on Wednesday. Four of those then four of paclitaxel, every two weeks. I’m going to try the cold cap but I bet it doesn’t fucking work. I have a 7 month old baby who is either teething, has the cold from hell or both, I don’t know. It doesn’t matter really because I’ve been up all night crying/panicking anyway so she may as well be up and crying with me, why not. I went to my introduction appt today and sobbed all the way through it, they were very very nice to me but nothing helps. I don’t want to do it. I just want to dig a hole. Or a time machine to when my life was normal.

It's frustrating when things go wrong due to errors like that @MrsPnut - I turned up for my first chemo and they hadn't prescribed my drugs so I had to go home and come back again the next week. Good luck today - hope it all goes smoothly.

And good luck too @WorryMcGee - I remember feeling like that. I'm coming to my sixth and last now and it does feel like it's gone quite quickly. The feeling before the first one was definitely worse, though it's never great the prospect of being poisoned. I cold capped with paclitaxel and carboplatin, and was told by lots of people it wouldn't work, whilst my hair is a bit too thin on top to go without a wig or head covering, there's enough poking out of a hat to look "normal" and I walk around at home without scaring myself every time I go past a mirror. I think it prevents irritation from my wig too, I've had no problems wearing it. Make sure you're wrapped up warmly though, it can get pretty cold, I was icing my feet too. The cold cap didn't cause me any pain, I was expecting it for the first 15 mins but I was fine. I did take a scarf to put over the top of my head and wrap under my thighs to pull it a bit closer to my head. Also, don't panic if you start to shed - you will - but you can lose a lot of hair and still look okay!

I got a cancer patient's survey through the post today - a national thing - anyone else got one? I shall enjoy filling that in....

I think I've decided to go for my sixth chemo in the end. I'm still not convinced I need it, but I think I just need to have it to get psychological peace and closure. I've arranged a couple of nights away visiting my daughter at uni the week after to do the Christmas markets and some shopping and eating, so looking forward to that as a celebration of being done.

@WorryMcGee Im feeling exactly the same, I have my induction appointment this afternoon and start the chemo next Tuesday, I'm having 4xEC every 2 weeks then 12 weeks of paclitaxle. Feel sick even thinking about it. You had a port put in?

Good luck today @MrsPnut I hope you get everything sorted today for a successful infusion. I have my second this week. Like you I have to drive for an hour to get there, bloods at 10am then have to wait 2-3 hours for the results. Infusion last time started at 3.30pm. Thankfully it's only 20minutes!

@fudgecat @WorryMcGee best of luck for your chemo sessions.

I've been through it and I'm now out the other side. I had 3 months of EC (3 weekly) and 3 months of Paclitaxel (weekly).

I cried my way through the first few sessions but it does get better, I promise! I cried because I didn't want to be a cancer patient. It didn't hurt!

Cold capping - worked for me! I did lose some hair and by the end it was much thinner but not noticeable to anyone else. If you can get through the first 20 minutes (which is just cold and a weird sensation), you can do it! Wrap up warm, I took a hot water bottle and fleecy blanket. Feel free to ask questions x

If you can have a port fitted go for it - amazing things and made chemo so simple.

Thinking of everyone having chemo currently - hope it is made a comfortable and straightforward as possible for you.

A beautiful Autumn day here - I plan to go for a nice walk to make the most of the sunshine. Then my bone density scan.

Finally getting my 6 month CT scan after two cancellations at the last minute.
Also sweating on CA 125 result as up last month. Worried that I may have spread to my brain as vision and balance been off , not eyes or vertigo, so overthinking things !

@thereisonlyoneofme good luck with the scan, do you know how long until you get the results?