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.

Wow @HerbalRefreshment you know your stuff! @TopOfTheCliff that's great that it's shrunk so much, fingers crossed it keeps getting smaller and smaller. Well two bits of news from me, I found out that my cancer is er+ and pr+ which seems to be a good thing? I think? Not had the her2 results yet so not sure if it's better for that to be positive or negative? Pet-ct has also been booked for next Tuesday.

Thanks @fudgecat It’s good to have positive receptors because it means there are treatments that can suppress the tumour in addition to chemotherapy. HER2 is another receptor that if positive means the tumour can be treated with a drug called Herceptin. This goes on for up to a year.
In general there are more options for triple positive cancers than triple negative ones, but there is still excellent treatment for both.
I hope this helps.
Top x

Hi all,

Wow I haven't been on MN in years. I used to be on the cancer threads during treatment and can't find the old threads. Just wanted to pop in and say hello. There used to be a lady who would do these threads and she replied to every single person who posted. I can't remember her name maybe Lily? Or daisy? I might be way off the mark with the name, but if you're here and you've changed your name please let me know how you're doing. Sorry it's been a long time. Life got in the way. I'm coming up to three years since being diagnosed in December. I'm clear as I can be. My hairs growing back really long now and I'm still living with the dreaded side effects. Anyways I wanted to say hello to you all and hoped you're all doing as good as can be expected. It's a shit journey no one wants to take

Thank you @HerbalRefreshment thank you a thousand times. That is exactly the kind of rational and informative thinking I need! You are amazing. The Marsden only got up to mentioning olaparib in terms of treatment lines so I am extremely fucking delighted to hear about all the other ones, some of which, but not all, I was aware of.

Yes you’re right — the Marsden & my local both agreed plan to switch to L/P after chemo anyway & I will be so happy not to traipse to the ward twice a week & sit in wretched chemo chair every bloody Friday. Although I might, just might, miss that weird lentil soup, dry sandwich & Seabrooks crisps lunch combo.

Another plus: I had picc line removed today — well I say removed, but as it wasn’t clipped in nurse just yanked it out, like pulling a (long, skinny & very annoying) rabbit out of a hat. Da daaaaa! I could have done it myself, and I did consider it, but knowing my luck something would have gone wrong. And one of my favourite nurses did it. She has a passion for fashion and loves bright colours. If I’m wearing anything that catches her eye she points at it & demands to know where it’s from. She said when I appeared ‘ah you’ve finished your treatment!’ and I had to say actually it’s been stopped because it’s not working anymore and then I burst into tears. She was wonderful & held my hand & then made me a cup of tea with sugar & even though I never drink tea with sugar I drank it & felt better. So many shit experiences with the NHS but so many wonderful people too.

But the best news of all —- & I can’t quite believe it —-is I am going for my patient chat for the new drugs TOMORROW. Well, today technically as inevitably it’s 1am & I can’t sleep. It was supposed to be on 19th & I was freaking out as such a wait. I was ready to fight tooth and nail, as usual, to bring it forward but no, all I did was write one (1) email to my onc’s secretary & I don’t even know if that had any impact at all as onc is busy Fridays and Mondays making cash in private practice. The NHS in efficiency shock?! I almost can’t believe it. I am so weirdly cheerful now. That’ll be the anti depressants. But hey - I’ll take it!

Top that’s great. V happy to read some good news, god knows we all deserve it. (I’m so bad at maths though I must confess I have no idea how it is 7/8 reduced?! It’s halved in size right, but … but … 😬)

Hi @ Nonotmenori I think that was probably Bridget. She used to go through everyone posts extracting the news and would write a toughtful, insightful and compassionate reply. I remember feeling very welcomed by her. She still pops up every now and then but I think she just felt she needed a break from cancer land.
🙋at Bridget if she is watching xx

What a wonderful, helpful supportive thread. Thank you everyone for sharing your knowledge and experiences - helps so much.

@fudgecat I had a lumpectomy just over two weeks ago for a breast cancer that was er+ and pr+. I had to wait for ages for the HER2 results - infact I got them the day after surgery and it was negative. My understanding is that I may now not need chemo - depends on the histology of the op, whereas if it was HER2+ I would have had chemo. Just praying those lymph nodes were clear!

@mowly77 fantastic news for your appointment! So happy for you that they’re not making you wait.

@Runningwithoutstopping Yes! Thank you that's her name. She was my rockstar because she never ignored a single person on these threads and it meant a great deal to a lot of us. I hope she is well and would love if she sees this to tag me and let me know how you're doing. Hope everyone is well

I've not been catching up with the thread for the last few days as I've been in hospital to have my DIEP breast reconstruction surgery. Gutted to hear your latest @mowly77 Keep going with what they can offer you.

Although not anywhere near as catastrophic as your case @MrsPnut I had my own extravasation experience: the general anaesthetic leaked into my arm as chemo must have wrecked the veins. I had to be cannulated in the foot as lymph nodes removed from the other arm. It was soooo painful - more than anything to do with the surgery itself so I can now sympathise even more!

I haven't seen any posts from @Silkierabbit for a while - let us know how you're doing if you see this 🙂

Aaarggh! I didn’t get my PET scan. Ended up in hospital on Thursday night with ongoing gut issues. (Stoma, Chron’s, infection) Told everyone that PET scan at sister hospital following morning. No problem said they, don’t test, drink or take any meds, we will run you over. So, no sleep, no food and most importantly no steroids (why they couldn’t do IV I don’t know). Appointment came and went, ambulance no show. PET scan office call me on my mobile, tell me how important it is to attend and inform me they have heard nothing. Re schedule appointment, same day 2.15. Guess what…
Now have to wait for them to contact me this week!
Very stressed.

@mowly77 Ah, thats awesome you got an appointment, sharpish! Usually there is a little bit of a break when changing treatments to allow blood counts to climb, etc. I had 8 weeks between palbo failing notification and starting olaparib (but then they stuffed in some radiotherapy in between so I wasn't completely adrift there). As for all the other treatments possible - I think they don't like to say anything past the potential next line because things may happen. Receptors change, a soft tissue or systemic crisis, bad side effects, etc. I guess the point is that there are a lot of tools in the box, and to keep that in mind while you are pushing for an oncologist to use them!

@HauntedDishcloth Hows your diep recovery going? I hated that hot blanket and 15 minute checks the first night. One nurse startled me out of a light sleep and the heart rate monitor started bleeping because it spiked lol. Almost a year later and Ive been very happy with the results.

Morning everyone - it's a lovely sunny autumn day here, but I'm feeling very low. I'm waiting for CT scan results before I start my chemo, and - since everything else has been worse than I thought it would be - I have convinced myself they will be positive. And the realities of my prognosis are starting to hit home. I know I'll get through this black spot and I'll probably feel better when I'm getting on with treatment again, but right now I feel angry and scared and sick of trying to be positive.

@mowly77 I've got confused about the days, but did you mean your appointment was today? Or tomorrow? Either way, I hope you get some positive suggestions about new treatment options.

And @Gilead - that's really shit, I'm so sorry. The lack of coordination from one department to another in the NHS is just unbelievable sometimes, and must lead to so much waste. Hoping you get the scan you need soon.

Hi, I haven’t posted in a while. I was diagnosed with a 9mm invasive ductal breast carcinoma in April 2022. Had lumpectomy and node removal, nodes were negative. Tumour oestrogen positive. I had radiotherapy and a couple of weeks later in July I became very ill with covid and ended up in hospital.
I started on arimidex about 3 months ago. I have just had a bone density scan and have osteopenia in my spine. My problem is I am not tolerating arimidex very well. I am fatigued, got joint and muscle pain, feel nauseous with zero appetite. I have intermittent headaches and I feel very low in mood. I was experiencing none of these symptoms before taking these meds. I am also anxious that they will further compromise my bone density.
I spoke to my oncology team who suggested I took a break from them ( apparently they take 4 weeks to leave your system) and said not to get too hung up about them as according to the online predict tool hormone blockers only increase my survival by 0.3% over 5 years and 1% over 15 years. I feel conflicted as I was determined to be compliant with my treatment but waking up with nausea,( I’ve tried taking meds at different times but it doesn’t make any difference)y not being able to eat ( my BMI is low to start with) is making me feel like life isn’t worth living. Also, I worry as these drugs can elevate blood pressure and cholesterol as well as weakening my bones.
Sorry to moan on as I can see others on here having a lot worse symptoms to tolerate. I just wish there was a medication that didn’t have so many side effects. The oncology team were very good and understanding and said there were other brands to try but they can also cause side effects. I feel like for such a small benefit in survival is it worth making myself utterly miserable. Has anyone experienced similar? Please help, I’m feeling desperate

I forgot to say my tumour is grade 1 stage 1b and with a Ki67 growth rate of 1%.
I am 61 years old

@Mycatispretty I don't have any helpful advice, as I'm in a very different situation, but wanted to say please don't feel bad for posting. Your risk might be low in the grand scheme of things, but those side effects sound miserable and I can see it would be a tough decision to make. Hope someone comes along with relevant experience soon.

@Gilead that sounds very stressful; communication between departments let alone different hospitals is shocking. Hope it is resolved very soon.

Yes @dotty2 my appointment was yesterday; but they fucked up the time so just had blood test (god, I forgot how useful my picc line was … but I have one vein that still works apparently) & they said would call me to do new patient chat later. Well, I missed the call but it doesn’t matter as I’ve already had the blinking new patient chat for those meds back in April, before I got super sick & everything got delayed so they switched me to Paclitaxel. Obviously I’ve told them that a million times but it was a ‘computer says no’ answer. Now - no matter as I have appointment to pick up the new drugs on Tuesday after I see oncologist. Two appointments on the same day; the efficiency is concerning. They can’t win!

@HerbalRefreshment I’ve already had a break of more than 2 weeks since chemo as was too sick with side effects to have it, good thing really — so whoosh, onto the next one. I’ve already taken letrozole this morning as had some already. Looking forward to the horrific night sweats they give me. Thanks for reminding me of some pertinent questions to ask on Tuesday about receptors etc.

Have my flu jab on Monday … & another covid booster on Thursday … a reminder to all you can book these now. I’m just hoping Monday’s jab doesn’t make me sick(er) in advance of Tuesday. But I’ll be dragging myself into that hospital even if I’m half dead.

@dotty2 thanks so much for answering, I really appreciate it. I feel so isolated. I’m so sorry you’re going through such a rough time. Big hugs

@Mycatispretty I had Arimidex for 8 months after I finished radiotherapy for my Triple positive BC. It made me ache and my joints were stiff and swollen. I was told to stop for a month then switched to Exemestane which seems slightly easier so I have had that for nearly a year. Now I am on chemotherapy for the new Triple negative BC I am off them as they aren’t needed currently. Like you the benefit I get from them is a tiny percentage and the quality of life on them poor so I am considering stopping. There isn’t a correct answer just a discussion to be had. I find it helpful to take Boots Jointace Turmeric and glucosamine supplements but I have stopped those during chemotherapy as well. Exercise like Pilates and yoga first thing in the morning helps a lot. It is an effort to get going but once I do I am fine for the day. I am 62 and pretty fit when I am not battling cancer.
Why do you feel isolated? Do you have kind people around you? Friends and family? Have you had any counselling? It helps get your head round it all after the maelstrom of treatment finishes.
Sending hugs
Top x

Thanks for your reply @TopOfTheCliff I’m really sorry you’ve had similar intolerance to hormone blockers and that you’ve had a new diagnosis to deal with. I feel isolated because I thought my marriage was fine ( good and bad patches like most couples) but I discovered my husband had been having multiple affairs and using prostitutes. That was obviously a deal breaker for me so now I live on my own and I’m a carer for my 86 year old mother (who is truly lovely but needs lifts to multiple appointments and cannot use the internet or mobile phone etc). I imagined a future with my husband retiring to the Lake District with cats and dogs and going for long walks with cosy pub meals. I didn’t think I’d be living on my own facing hideous scary decisions about cancer treatments and being a sole carer for my elderly parent. I do have a beautiful cat though!
My mum is like my best friend but I hide my angst from her as it’s not fair worrying her. I have good friends but try and put on a veneer of cheerfulness as I don’t want to burden them. The last few weeks, since being on arimidex I’ve wished I was no longer here because of the nausea, headaches and joint pain. I’m used to being fit and a regular gym user. I go to a tai chi class with mum once a week which is a good laugh ( the class members are good fun and so is the teacher). When I was feeling particularly low I organised counselling through McMillan which I’m finding helpful. Sending hugs back x

@TopOfTheCliff i seem to remember from earlier threads that you’re a G.P? Patients of yours must be very lucky to have had (if you’re retired) you as you sound so caring. Ironically I worked in palliative care for most of my career as a physio. It’s weird being on the other side of things and being an oncology patient.

@Mycatispretty I don't know anything about the particular drugs you're talking about, but for those percentages with the side-effects I wouldn't be taking them I don't think. I'm probably going to turn down radiotherapy for similar reasons. We know that exercise can massively reduce the risk of recurrence, and so arguably you're putting yourself in a worse position by taking drugs that make it difficult for you to exercise even this may have greater benefit. I think we chatted before, as I am on my own and carer for my 89 yo DM. I'd previously been hiding a lot from her because I didn't want to worry her, but I realised that putting her feelings first all the time was not helpful to me and my own healing and wellbeing. I've also always been very self-sufficient and have found it difficult to rely on friends, and some have not been able to cope very well and have been a bit awkward, but some have been absolutely fantastic when I have told them how bad I have been feeling at times. I once read research that said that people feel more kindly towards you if they've done you a favour than if you've done them a favour, so that helps with opening up.

I've been way for a week, on holiday then visiting DD who has just gone to university. I really didn't want to come home. Going into fourth round of chemo this week plus my BRCA testing results are due about now. I just wish it would all go away.

@SierraSapphire thank you, that’s exactly what I wanted to hear. I’m normally fit an active, walk at least an hour every day and do a home regime of weights (not very heavy ones 😀) and yoga stretches. Since starting on arimidex all I do is look after mum, do minimal housework and lie slumped on the settee feeling utterly depressed with debilitating nausea I feel like I’ve aged 20 years in 3 months. I think you’re absolutely right that surely keeping active increases our survival rate. At the moment I just feel half dead.
I’m so sorry you’re going through chemo and I wish it would all go away for all of us on this thread. Glad you had a break away and saw your daughter. Thank you so much for your reply.

@Mycatispretty I’m so sorry you’ve gone through all of that with your ex-husband, & that you feel so isolated now. I find this disease is massively isolating. You’re suddenly thrown into an unfamiliar and horrible new land, and no one can really join you there, even if they try and visit. It’s not the same as they don’t live there, in the world of the sick, dealing with it 24/7 like we have to.

I haven’t had the exact type of drugs you have but after my first diagnosis I was supposed to take tamoxifen for 5-10 years and I just couldn’t tolerate it. The FEC had ravaged my body & mind & tamoxifen made me feel like I was 100 years old overnight. Joint pain was off the scale; insomnia; hot flushes etc. I was only 37 & couldn’t hack it. I took it on and off, but not properly. I agree with others that with those statistics it’s just not worth it for the tiny % benefit. If your quality of life & your mental & physical health are in the toilet it’s ok to say no, I just can’t tolerate this. You know your body better than anyone else. You are not obliged to take any medication or have any treatment that is not right for you. Although I understand the fear & guilt about going against the grain, and the drive to do everything you can to survive. But if I was in your position I would say enough is enough.

@mowly77 thank you so much for understanding. This thread has pulled me out of the depths of despair and loneliness this evening. I am so sorry you were diagnosed at such a young age and you have a young daughter to worry about.
I feel like the medics, as well intentioned as they are, have a set formula and we are meant to comply without questioning. I am a very compliant person, wanting to maximise my chances of survival but I just can’t do this. It goes against my nature to refuse something that is meant to help me and that’s why I’ve been struggling.
The messages I have received on here have put my mind at rest and have made me feel like I’m making the right decision. I think people can sympathise (as I did as a health worker in palliative care) but until you’re going through the physical and psychological effects of this disease people cannot understand the loneliness you feel. Big hugs to you and thank you for replying to me this evening. I feel like I’ve been going crazy this evening in my cycle of thoughts and feelings of guilt at stopping the meds.

@Mycatispretty You’re spot on about the medics. Someone in this thread or a previous one phrased it as ‘the breast cancer meat grinder’ (or any cancer, of course). Can’t remember who, sorry! But such a good phrase. It’s so true. They expect patients to comply. My oncologist obviously HATES being questioned. She’s very chippy about actioning things not in her original plan, it’s her way or the highway. It’s not right. And she always makes me feel rushed too. Like I’m massively inconveniencing her & all the other patients waiting to be poured into the meat grinder by daring to ask a question.

We’re all so vulnerable as patients. This is likely the very worst time of our entire lives. It’s very hard to push back against their attitude when you’re so raw & vulnerable.

I’m glad you feel a bit better or at peace with your instincts/ decision. This thread is a marvel sometimes.

love to everyone on here; and everything we’re all going through … it’s a lot.