Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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@Remaker it seems likely that the Cape gives more diarrhoea when used for colon cancer. I don’t get it at all while on the tablets ( for BC prevention) but on my week off I get a day or two of explosive bowels. I’m learning to take the Imodium preventatively now. Most of the time I am constipated.
Endurance is right. Putting up with endless crappy situations, waiting for appointments and stuff and having painful or nasty things done to you all takes a stoicism that is a world away from pink sashes and Ride the Night. It’s almost as if there is a move to make breast cancer seem like it’s no big deal. The BBC article was suggesting this. Most people are cured. Look at these shiny celebrities who have beaten it with their shiny hair and special diets. Perhaps it’s to persuade people to attend their mammograms. Or to somehow minimise the fact that it is an aggressive killer disease that can kill. I have recently lost a pretty third cousin who had BC at 36 and declined chemo because she didn’t want to lose her hair. She died leaving two small children bereft. This is why we take these awful drugs and go through horrible treatment; because we don’t want to die! Can you tell I’m feeling grumpy and tired today?

@isaxx you should know better than to Google! Sorry about your TNBC and welcome. Your white cells might be up for lots of reasons eg a recent infection or a scratch from gardening. Stick to safe sites like Macmillan and BC Now and NHS to avoid The Fear. Are you having surgery first? That’s unusual with TNBC.

sending strength to all
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@lucysmam you are allowed to be mememe here! Who else could you rant to? I think being self absorbed is totally understandable and I’m sure my DH is bored to death of me going on about side effects. Better to let off steam here.

@Lisdeflores I wish I could give advice but I don’t seem to be succeeding with my own friends. My 3 closest (or I thought so) friends have all gone rogue in various ways. One scolds me for not being positive enough, one fills up our group chat with pages of gossip and inane chat but never responds to anything I post about my health. The one that hurts the most is my best friend of more than 40 years who is too busy to call or text. I’ve just really scaled back communication with them and give short answers when asked directly how I am. I don’t think they want to know. In your situation I would probably choose one activity that you would really like to do and tell them that’s what you’re coming to as you have limited energy. They aren’t going to understand sadly so I think self advocacy is the only tactic that will work. I’m sorry, it is so hard when you aren’t supported by people you expect it from.

@TopOfTheCliff yes it makes sense to me that after losing 80% of my colon I would be experiencing diarrhoea! I’d got back to something kind of resembling normal about a week before I started chemo and my surgeon is optimistic I will get there again post chemo. I can only hope!

Hi....
Not sure if I should be here, not yet actually diagnosed with anything, but my platelets have been on the increase since March. A chest xray is clear, waiting for an ultrasound, bit had a positive fit test of 112.
And in the middle of the fit test result I'm on holiday in Lanzarote.My GP has done to referral for the colorectal people at the hospital, spoke to her on Monday, so for now, I feel I've done all I can til I get home.
Trying to relax for these last few days - fly home on Monday, thinking I might have busy and fraught times when I get back.
I have read this thread, and finding all your advice and tips, and knowledge very helpful :)
Have managed to stay away from Dr Google, although I'm aware raised platelets can be a sign of cancer.

Lisdeflores Could you maybe just join them for a meal one evening if that's an option and if they try insisting on weekend and you don't feel up to it just say sorry not well enough for that. Or if there's a hotel stay would you feel up to going and if unwell stay in room and if well enough join in?

Welcome DumbledoresWand and hope you can enjoy last few days of holiday. Most cancer checks turn out not to be cancer so it will hopefully be fine.

Thank you @Remaker and @Silkierabbit you helped me to realise that I only need to do what I feel up too. I will set my boundaries and stick to them. I think I got myself in such a tizz about it I couldn't see the wood for the trees.

Remaker I also had a longstanding friend who didn't contact me for a long time. She eventually told me that it was because she 'didn't know what to say to me' 🙄 yeah,because my cancer is all about you!

@Lisdeflores I suppose this is where that whole spoon theory comes in to play. You know how much energy you have to play with on any given day, just where are you going to spend that energy/spoons? Id say check the schedule, see which bits you REALLY want to do/you think would be the most important and where you would have an out to duck out or can arrive/leave by your own means. And if people say 'oh come on, of course you can!' just say no, sorry, too tired but I hope you all have a great time and head off.

@Remaker thanks for the heads up! Ah - forgot about a symptom diary, that would be smart. I really hate wearing socks in bed, so I am hoping wearing the moisteurizing spa socks after lotion before bed for an hour or two will be enough. I did a trial run the other night and it wasn't too bad, suspect Ill have more hassle in the morning when I dont want to do that after a shower.

Hi all, anyone have any advice re gums- I feel like I could actually rip my teeth out my gums are throbbing so much!

@Icantfindanewname

My breast MRIs were all similar to yours except they didn't ask me to place a cod liver oil capsule near the tumour, but then again my tumour was over 10cm (100mm) and in multiple lymph nodes, so I would have been there all day attaching capsules to my body!

I did attach them to my nipples though, and the rest of the MRI was like yours.

It seems odd, doesn't it. I've done other MRIs and there weren't any capsules, but a sort of thing over my body instead.

@lucysmam

Whatever you decide or they advise you do about the draining, I hope you get to join your DD for the prom things and that it doesn't mean missing anything you'd have liked to have done. I suppose the best thing would be if it didn't need draining any more! I'm keeping my fingers crossed that's the case.

@HerbalRefreshment

What a total nightmare that year must have been.

Where I live there are several private hospitals and each NHS one also has a private healthcare section.

I have used one of the private hospitals to see a consultant: during chemo I had a problem that the cancer team didn't take seriously so I saw my GP. GP tried antibiotics and everything they could think of, but no luck so they advised me to pay £200 and book a consultant appt at the private hospital. GP said NHS would be a few weeks and in their opinion it was getting urgent now.

I rang the private hospital and saw a consultant the SAME DAY! He was fantastic, diagnosed my issue and dealt with my treatment. I am still under his care for that. He considered it very serious.

That was mid October 2022.

That same day in October my GP had advised me to go to the private hospital to see a consultant, the GP also referred me urgently on the NHS. My NHS appointment finally came through for end March 2023. An urgent referral....

Private health care is so much quicker. The NHS is not fit for purpose. I would have been in a very, very sorry state by end March if I hadn't been able to afford to pay the private consultant in October.

I'm not in the slightest bit against private healthcare, I just think the NHS needs to get itself sorted asap. Otherwise, it's really sad to see this country have such unfair split provision. There are plenty of better models in European countries to get ideas from.

I only mentioned private vs NHS yesterday because I think Sarah Beany is deceitfully presenting herself on TV as an NHS cancer patient when she is actually a private patient. Showing an NHS hospital means nothing: private patients get stuff like chemo and radiotherapy at NHS hospitals (mostly). Her treatment was super fast I cannot believe it was on the NHS, so her programme was misleading and deceitful, which I don't like.

Plus she was very early stage, lymph node negative. Apparently the end of her programme told BC patients they don't need to be anxious. I won't watch it, I think my blood pressure would explode!!

@TopOfTheCliff

I'm so sorry to hear about your cousin.

I totally agree, BC in the press and everywhere is very pink ribbon, thriving survivors sailing around the world and whatnot.

Most of them likely had DCIS, or a tiny stage 1 ER+ grade 1 mini cancer, not a single dose of chemo or immune therapies but treatment over in a few weeks. Not TN or HER2 or inflammatory stages 3 or 4 for sure.

It's really presented as though BC is only ever like DCIS or possibly stage 1 grade 1 ER+ The general population have no idea BC is a collection of completely separate diseases.

I read about Martina Navratilova having BC recently, turns out it was DCIS. She's great though, she wasn't going on about at all like Sarah Beany or others who are more or less invariably stage 1. Except Shannon Doherty, she's trying to show people the harsh reality when cancer progresses further (stage 4 with brain mets).

If I told people my cancer is Erythroblastic leukaemia viral oncogene homolog 2 (my type of breast cancer using its full name) maybe people would stop saying "only breast cancer, oh you'll be fine then!"

@HerbalRefreshment Im sorry you have to contend with a hip flexor problem and I understand your worries about The Cane especially when you work so hard to stay well and mobile. Any literal small backward step and that wading through treacle ignites and the 'oh not again'. Its all so unpredictable and living with constant insecurity is draining.

According to the US forums I should have v little hair by now on Enhertu. Im waiting for it to slide off in one go and have been carrying my wig with me for that very event. Its staying put so far and not even any thinning so maybe ill get a couple more months of hair or maybe it wont fall out at all. Heres hoping. Eyebrows and lashes are fine. No hair loss at all.

Its day 15 of the 21 day cycle for me and Im feeling decidedly more like myself. My sense of humour disappears on this drug for a while but its back. I met my friend for lunch and she tried to establish preditcability around the side effects telling me I must feel so much better after week 1. Erm nope its totally random and side effects come and go through the whole cycle but generally the last 2 days are my best.

I want to speak to the chemo nurses next week. They call me before my treatment to check if Im ok but they dont tell me when and I often miss the call and they dont leave a message. I then get into a state of anxiety about my blood tests and convince myself my liver function is terrible. This is on the back of x2 raised bilirubin levels probably due to the Kadcyla.. It was back to normal last time. I want to ask if I can call them instead..

I try to tell my work colleagues BC is a collection of different diseases under the title 'breast cancer' and its more to do with controlling the drivers than 'the breast' I said like I the previous poster that I am a triple positive cancer which means I get totally different treatment to a triple negative or hormone positive cancer with different side effects. I got the blank looks.

One of my managers likes to tell me how it is for me and how I feel. Her sister had primary BC and had mast and radiotherapy. I was wondering whether I should involve myself in some new project thing given Im on enhertu which was described by the onc as 'harder chemo'. The manager chirped in to say her sister worked all the way through her treatment. I asked 'what treatment was that then?" and my manager said 'oh radio and she said thats nothing'
My reply 'Im not your sister, love'.

Quite often when Im feeling rough I find the tweeness of friendships really hard to manage. Ive one friend who is somewhat childish and she will give me details about her eyelid infection that she is using to take time of work and her daytime activities. She also likes to pretend her dog is speaking via text and FB which I find intensely irritating. Another friend has facepain and has given up work and is wearing a balaclava 24/7. And then there is the musculoskeletal crowd at work. They all love to tell me their health woes but as the chemo nurse told me 'you will always have the trump card'

Another thing I really struggle with is hearing the word hospice. Our hospice has undergone a change of direction and is now offering wellbeing things long term and actually says its for long term patients. But I cant go. I just cant even fathom it. No one has mentioned hospice from the medical team, its because ive known stage 4 people attend their local one for all sorts of wellbeing events.

Yes radio did the trick for me. I had it skull base to C7 for 5 days at 6 mins. I took steriods for that. No skin issues, no swallowing issues. It took about 6 weeks for the pain to go. Straight after the 1st lot I had it from T2 to L5 for 5 days. The onc said I can have more of it if needed and I havent and that was 4 years ago..

I do love hearing peoples perspectives on selebs and cancer 'influencers' with breast cancer, navigating friendships and partnerships and work.

Forums. I am on this forum and the Enhertu FB group and a dry humoured IG group called 'thecancerpatient' which uses memes and one liners to sum up how I actually feel. I used to be attached to many more but I realised they were doing nothing for my mental health only making me even more anxious.

Wishing everyone a pain free, low side effect day with sun on the side.

@SummerCycling I hear you, Im not sure a lot of people realise just how down the dumps the NHS is/can be AND just how much of a geographic lottery good care is. Not all care is good care. And then you get these programs where women are shown zipping through treatment in light-flooded consultancy rooms that dont look like heaving bus shelters and are supposedly 'on the NHS' and I wonder just what hospital THEY are at.

I dont think its up to any celebrity to disclose their treatment/advocate if they don't want to, and that goes for 'normal people' too. I suppose its just reflective of the broader BC/cancer population - at a later stage you dont want to be treated like a zoo animal or get the pity looks, so you keep things private and try to forget while if you get an easy ride sure I bet you are going to celebrate the hell out of it. I just think the editing could be a bit more aware, sensitive, and informative about how there are different shades and types of BC driven by different processes, with some more aggressive than others. No need to get too technical here!

@Greyandrare123 Its the other shoe dropping syndrome, isnt it? :) And here I was doing gentle exercise as recommended. Its been very hard to dial things back and accept physically Im older than my age. We are all still healthy and 28 in our minds, right? :)

Ive been avoiding certain work programmes/projects for years because I dont want to have any interaction with two people, one of whom was my manager when I was diagnosed, and her superior. They automatically assumed I wanted to share my diagnosis with the entire 30 person team of (mostly) under 30 year olds. Uh no, Im ready to die in a hole of embarrassment because I was made to tell the four directors in the first place. Line manager tried to relate based on her one CT scan for suspected pneumonia. That was when I decided no one needed to know what was going on and Ive stuck by it, although I suspect its been circulated over the years what happened.

I do believe Covid has had, and will continue to have, its silver linings - it got me out of the office and distracted everyone from what was really going on, made WFH viable, will hopefully drive new funding and research and regulatory models for cancer treatments.

@Lisdeflores
I understand how even the whatsapp messages are exhausting. I use all my fight and flight adrenalin getting thro the actual day and I have none left for the 'excitment' of group messages.
Im thinking myself here so it may not be relevant to you but heres my thoughts. Id decide if I actually want to go and if its a yes or half yes Ill explain the 'reasonable adjustments' for want of a better term that Id need. You will be leaving early if you are tired. You may not be drinking as much. You will be having a break mid afternoon if you need to. You may meet them later if you have morning fatigue. You may have to leave at short notice if you get an overwhelming level of fatigue.

On the topic of the relative risk of different kinds of BC, there was a new paper published this week in the BMJ with a huge analysis of all the women diagnosed with BC in the UK between 1993 and 2015. The overall news story is good - 5 year mortality rates dropped massively. But there is a lot of variation in there, which confirms what you've all been saying. You can use the supplementary tables to look at the 5 year survival rates for your specific kind of tumour (if you want to - I did and kind of wish I hadn't now). There are some surprises in there - HER+ 5 year survival rates between 2010 and 2015 were higher than HER-. Liz O'R has done a video about it and surmises that must because of the positive impact of herceptin treatment - but they also excluded people who had neo-adjuvant treatment, so that must distort the picture as well? Anyway - here's the link if it's the kind of thing you find helpful:

@Greyandrare123

I hope the hospital allow you to phone them rather than you having to wait around not knowing when the call will be. When I had (unknown to me) grade 3 neutropenia nobody phoned so I went in for chemo as normal, then they said I couldn't have it and to go back home. It's certainly better to know before making the effort to get there!

"One of my managers likes to tell me how it is for me and how I feel. Her sister had primary BC and had mast and radiotherapy. I was wondering whether I should involve myself in some new project thing given Im on enhertu which was described by the onc as 'harder chemo'. The manager chirped in to say her sister worked all the way through her treatment. I asked 'what treatment was that then?" and my manager said 'oh radio and she said thats nothing'
My reply 'Im not your sister, love'.

If her sister only had a mastectomy and radiotherapy, then she was hormone positive, HER2 negative, low grade, and early stage.

That is a completely different disease to yours, obviously, with HER2 +++ and stage 4.

If your manager doesn't understand that there is no comparison whatsoever between her sister's disease and/or treatment to yours, then she is shockingly ignorant. With that level of stupidity I wouldn't honestly know where to start with someone like that. I'm sorry your manager is such a complete idiot, it would really get me down.

On a happier note, I'm really pleased to hear how successful radio was for your bones.

I agree with you that nobody should disclose their diagnosis or treatment to anyone unless they want to, and then only to the people they personally choose to tell.

HOWEVER, if it's a celeb who decides to constantly put out press releases with updates on their cancer journey and then even makes an entire TV programme about it, then yes, they need to be transparent about (for example) their care having been private rather than on the NHS.

And by simply saying 'breast cancer' and showing complete recovery in just a few months, they also need to explain (or have a medical professional explain) that this only applies to certain patients - that there are diverse BC diseases, grades, stages, etc. I don't see why it can't include this crucial information using graphics to make it accessible to people who can't understand nuanced or medical or whatever stuff.

As it stands, it is grossly misleading on various counts. It simply infuriates me. It is also partly why situations occur like what @Greyandrare123 experienced with her manager recently.

@dotty2

Thanks for sharing that great link!

I found the statement about HER2 positive having better survival than negative, but only after seeing a bucket load of data demonstrating how ER+ has much better survival than hormone negative.

So that makes me wonder, when they claim HER positive has better survival than HER negative, are they including double / triple positive BC? I know that ER+ HER+++ has better survival than ER-neg HER+++. But then grade 3 HR-neg HER+++ has higher likelihood of achieving pcr.

Even HER2 positive seems to be an extremely diverse collection of diseases. As we are sharing links we like, here's one I can't stop reading on HER2 ie erbb2:

https://www.mycancergenome.org/content/gene/erbb2/

@dotty2

That is actually totally weird they excluded people who had neo-adjuvant treatment isn't it.

I don't get that at all because AFAIK pretty much all HER2 positive people get chemo before surgery?

They need to compare those groups then, HER2 positive with/without neo-adjuvant if the prognosis has improved so much without.

@SummerCycling There was a good rationale in terms of study design for excluding cases with neo adjuvant treatment as it means you can’t compare like with like in terms of the variables. (A 20mm tumour surgically removed post chemo isn’t the same as the same size with no chemo. Same for lymph nodes.) But I agree, it does make the claims around relative survival rates dubious.

@ChateauFille have you had your tests yet? Thinking of you and your DH