Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

@tothelefttotheleft

Thanks, it was very traumatic when I discovered more about the monstrosity that was in my body. My prognosis was poor, I later learned (it responded very well to chemo though, so my chances of survival have improved a lot after that they said). The lengthy waiting times at the start were excruciating too.

You've been given a surgery date, which makes it sound like there's no chemo beforehand. I had chemo first, then surgery. I know a lot of people who had surgery first though, it's very, very common.

I'm sorry, but I don't have sufficient knowledge to advise you on your question about waiting for a particular surgeon or switching. Did they comment on it at all? Have you met a surgeon yet?

I asked about having a double mastectomy. They didn't think I should cos of the complications of a bigger surgery and cos the one advantage of massive boobs is they said they could take loads of tissue round the lump!

I just thought if I'm going to end up with a recurrence and mastectomy in the end I'd rather not have Multiple surgeries and get it done and over with.

I don't know what MOT is?

My consultant from the breast clinic and who gave me the results can do the surgery on the 21/22nd November.

@tothelefttotheleft

Sorry, after so long as a cancer patient the terminology has become so familiar I forget I only learned it during treatment! MDT is the team, so it includes all the people treating us, like oncologists, radiologists, surgeons etc

@SummerCycling

What's a CMS?

So who is the surgeon who could do it sooner - a colleague of the surgeon you saw?

I am back - I totally forgot about my facemask until I'd already moisturised & left my nail stuff on my bed but 🤷‍♀️ Some pampering's better than none 🤣

@Florabritannica I had 18 weeks in all of weekly paclitaxel - didn't change anything diet wise except less alcohol, although that increased slightly towards the end as I had a couple of nights out with colleagues and friends.

I found that the first few weeks I was quite tired & napped during the afternoon most days but I'd also lost a lot of weight when I was really ill so that's probably partly to blame too! Other than that, I carried on doing pretty much everything I would normally have done (so days out with the girls, visiting friends etc) but no work, obviously.

I had epic wind those first few weeks too, but that settled down. No diarrhoea or constipation alongside it. Also, no nausea or sickness apart from the very first week.

I shaved my head after week 5 as it'd got to the point where disguising it would have meant some pretty elaborate styling was needed & I just cba with that. But, it was growing back by the end of that week & my colleagues, who I see less frequently than anyone else, have commented every time I've seen them that it's growing more. It didn't come out a second time which I was quite nervous of it doing.

The only noticeable side effect for me was the hair loss, and one I only noticed when nail polish shopping was discolouration of my nails. They also started growing back normal coloured though, well before week 18.

I do remember speaking to the consultant pharmacist one appointment when the oncology consultants were on strike & he did mention that Paclitaxel tends to have fewer side effects when given weekly, as opposed to 3 weeks apart (or whatever timescale)

Oh, and, when I got to about week 12, I hit a wall of "done with this now" when all the ladies who I'd got to know were ringing the bell & I was still chugging along.

Honestly, I've just felt like me the whole way through (after getting through that first week & being told off for getting the bus to my first clinic appointment 🤣), with annoying & time consuming appointments along the way which may or may not put me out of action for days on end. I hope it's the same for you, but do know that everyone reacts differently (& I've had some very funny looks from the chemo suite nurses when they're checking side effects & I told them to tick no for everything 🤷‍♀️).

Omg that was an essay! Hopefully it's helpful...or maybe it's just a lot of rambling 🙈

CNS = Cancer nurse specialist.

We are each supposedly allocated one, and we are supposedly able to contact them during treatment. They are there to explain stuff and they also sit in your appointments with the surgeon and oncologist.

Mine couldn't explain though because she only knew about ER+ cancer, but that wasn't a bad thing in the end because it made me read up online and learn quite a lot that way.

Our hospital CNS phone number was 'out of order' for months though. It's working now again, and when it works it's really good - a nurse phones back when you ring in with a query.

If you get a CNS it might be a MacMillan nurse.

@tothelefttotheleft

You said yours is not hormone positive. Do you know if it's Her2 positive?

The choice of treatments depend on these ER / Her2 receptor categories eg targeted therapies etc.

@FairyWren7

I'm sorry to hear that and that you're feeling so low at the moment. I know your other friends and family are across the other side of the world, which makes it harder too. (((((((((hugs))))))))))) I hope things feel a bit better soon x

@SummerCycling

Yes I have a McMillan nurse. She's going to call me this week. She was at my results appointment.

I asked for a copy of my biopsy report so the info is probably on there. I'm stupidly scared to look at it lol. My grown up child asked me to request it. They've read all the McMillan pack. I haven't even opened it. Different ways of coping I suppose.

Really appreciate you replying when you have lots of your own stuff going on.

@lucysmam Thank you for your essay! I’m having four fortnightly rounds. 18 weeks sounds a lot! So did your hair start growing back after week 5? That’s incredibly encouraging - I actually shaved mine last night inspired by seeing Amy Dowden on Strictly.
I’ve been pretty wiped out by EC. I have it every other Tuesday and spend the weekend lying on the sofa feeling sick and fighting hot flushes. Even the excitement of red wee only last for a day. So it would be very nice indeed if Paclitaxel turned out to be less of an ordeal.

I'm not sure cos she also told me one of her colleagues is off sick.

@tothelefttotheleft

Welcome to the best thread no-one wants to be a member of!

It doesn't really work like that. Needing chemo is dependent on the grade, size, lymph involvement and a variety of other factors. For some, radiotherapy to the chest wall is still needed after a mastectomy.

Due to a grade 3, ER+, HER2- cancer, I was told at the outset that I there was a good probability that my tissue would be sent for oncotype DX which would settle if I need chemo. If your tumour is also grade 3, ER+, HER2- and has 0-4 lymph node involvement, they should send yours for oncotyping. However, if you have more lymph involvements or your cancer has spread elsewhere, they will opt for chemo

Genetic testing is offered if they feel your family history warrants it. I was offered it a decade ago and declined. I also declined at my initial diagnosis, but a few weeks later after further tests, finally decided to get tested as I was curious. This was before my mastectomy. Results came in around 5 weeks.

On my initial diagnosis, I was grade 3 with an 18mm tumour, which put me at stage one. My initial plan was lumpectomy, radio and ET, changed to mastectomy and ET. I opted for a mastectomy in the hope of avoiding radiotherapy. Regrettably, my pathology report revealed a 50mm multifocal tumour, so radiotherapy is needed. My oncotype score was sky high for recurrence, and this coupled with two BRCA mutations means I do need chemo.

All in all, it's entirely personal and unique to the individual, and not as easily predictable as one might think. Things change often during the initial diagnosis, so prepare as best you can for the unexpected and for the landscape to change several times. On my part, I only read about things once I knew for certain they applied for me. At first, all I researched were mastectomies. Then it was radiotherapy. Now it's chemo. Will move on to ET properly when the time comes and I know the drugs they'll give me. I don't see the point of informing myself about things that aren't relevant to me.

The best thing is to talk to your surgeon and breast cancer nurse. Also, if Macmillan are incredibly helpful.

@tothelefttotheleft I have my pathology report. Was slightly miffed at the comment about my nipple and areola being unremarkable, then realised that in this instance, it's a very very good thing! It's fascinating reading.

Seriously though, read your pathology report and the information you've been given. It's a great starting point and nothing to be scared of.

Welcome to the thread @Tilllly, hope that you get some answers soon.

@FairyWren7 that sounds really hard re the calendar. Agree that yiu should talk to your husband. I am very inspired by your self-care.

@tothelefttotheleft glad you’ve got a date for surgery. It’s interesting what you say about the option of a double mastectomy and them being able to remove more tissue round the kump
if you have big boobs. Mine are on the modest side, so I’m wondering if it will make it more difficult.

sending lots of love to everyone

@tothelefttotheleft

I'm happy to share what I learned. I started treatment in the summer of 2022, so it feels like ages ago now. I have just reached the end of my treatment plan.

I literally knew nothing at the beginning, but have read loads online (journal articles mostly), but completely understand when someone would rather not know anything at all - I know a couple of people who prefer it that way. There's no right or wrong in that.

It's really good your adult child is requesting documents. Maybe keep them in a folder as you go? I think it's good to keep them.

I don't blame you!!! I never bothered reading the massive info pack I was given either. I find the MacMillan books hard to focus on somehow; my brain prefers the less chatty and more specific academic journal style eg with the standard words for things such as oncologist rather than 'cancer doctor' and specific names of the medications, scans etc.

@Florabritannica it started out as "get some sort of something into me to stop the cancer in it's tracks", since I coped well they went to 12...and then asked if I'd object to the whole 18 while things were going well. It was a slog towards the end though. I think you do get to a point of had enough mentally.

Yes, I had chemo 5 on the Friday, we shaved my head the following Monday, and by the time Friday came round again it was stubbly. Odd patches here and there where growth wasn't quite in-sync for a while but it's evening out now & I'm 3 weeks post-chemo.

One of the ladies who was having Paclitaxel at the same time as me, then had 3 rounds of EC. She also said it wiped her out over the weekend. The red wee thing fascinated me! And she mentioned it made her nose sore too.

@SummerCycling interesting you mentioned every bc patient having radio - I haven't! Wonder if they're keeping that up their sleeves.

I did some googling of some of the meds I have earlier & their cost, out of curiosity, & I am genuinely shocked at the cost of some of them - particularly the Abemaciclib!

@lucysmam

Then I was wrong about every breast cancer patient getting radiotherapy. Thanks for correcting me!!!! (I wasn't certain, that's why I said AFAIK and added the (?) )

Yes! Our meds cost a fortune, don't they! I had Abraxane which is Posh Paclitaxel 😂 (after I was totally allergic to paclitaxel). I also had 18 injections of Phesgo, and each one was £thousands apparently 😳I feel I need to live for years now just to make the cost to the NHS worthwhile spending it on me 😅

@SummerCycling I wasn't supposed to have radiotherapy either, but unfortunately, that's no longer the case!

Hi @doublec

That's so interesting; thanks for letting me know!!!

Did they change their mind because it was higher grade? or was it invasive as opposed to initially DCIS? Do you know why they initially thought you wouldn't need it. Only answer if you feel like it, obviously 🙂

You and Lucysmam are the first BC patients I've 'met' who haven't / weren't going to have radiotherapy.

Sorry I was wrong about that in my post earlier this evening xxx

@lucysmam The sore nose is because any nasal hair falls out so it's more sensitive. Have already bought some vaseline in preparation of this.

Btw, will keep you posted re. my balaclavas and any other headwear I purchase!

It was a real eye opener! Dd1 then carried on looking up some of the more 'run of the mill' ones like ondansetron & loperamide - they were less shocking.

I find it really interesting reading the different types/subtypes of cancer everyone has & the various treatments going on. Not something I ever thought I'd say!

@lucysmam the nhs did a confidential deal for the Abemaciclib which allowed it to be made available so it’s not costing list price. I’m sure it’s still very, very expensive though. I had 3 weeks supply of 100mg left when I stepped up to 150mg as my appointments had got out of sync because of holidays. I asked if they could prescribe some 50mg tablets so I could make up the dose but Computer Says No. They just gave me a new supply. So that’s a few hundred if not thousands of pounds wasted…Any ill effects yet?? I’ve just realised I haven’t had to cut my finger nails for ages, they seem to have stopped growing but not gone discoloured like on chemo.

Welcome @tothelefttotheleft . I’m another BC patient with Grade 3, Stage 3, node positive and have had the full triathlon of treatment. I’ve found this thread a huge help.

@SummerCycling

I've found this on my biopsy report.