Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

@Therocksword and @isaxx welcome to the thread nobody wants to be on. Sorry you needed to join us. We keep telling people the early days of diagnosis are the most frightening because once you know the score and get into a routine with treatment it becomes manageable. Until then keep busy tidying out cupboards or weeding the garden or something. The Calm App helps too.
@isaxx I have TNBC, picked up early by me between mammograms for my TPBC nearly a year ago. Hopefully you will benefit from the new immunotherapy introduced last autumn if you need chemotherapy. Most TNBC is treated with chemo because it is a nasty pervasive little bastard.

I have had a lovely day mostly outside in the sunshine. Yoga at the beach then coffee with the BC yoga gang, then I volunteered to help with organising some sailing races tonight on a beautiful sunny evening on the river. I’m exhausted now but I’ve got 48 hours till I start round 3 of Cape so I’m making the most of the good times.

@Atreus

Sorry to hear about your Mum.

Your camino trip sounds wonderful. Best of luck with chemo, I hope you don't get too many nasty side effects but that it works well. It sounds like it started as well as it could have done, which is really comforting.

Regarding the cold cap, my nurses didn't seem to know how to do it, faffed around for hours so I gave up after the 2nd attempt, which I don't regret.

@FangedFrisbee

Well done starting immune therapy!

@isaxx

yes, it happened to me too. They noticed some things on my body scanning CT that they wanted me to have an MRI for to look at more closely. It turns out it isn't currently cancer, but they want to continue MRI observations each year. I was told it's very common for other things to be discovered while doing the initial body CT, which makes sense, and that they are often not cancer. It is of course very scary though.

@lucysmam

8 weeks.. oh that must have been hell. I'm so sorry they took so long.

Good to hear your body is processing the fluid better now, and fingers crossed about your BP xxx

Summer I had a total node clearance on the right, think they took 25 nodes out in total. No seroma, had cording at the start but I forced it with exercise in about week 2 (probably not recommended but not very patient with these things) and it snapped and was fine after that. Radio I had 5 intense which they said was equivalent of 15 - not sure exactly where breast area, chest wall I remember, radio was very easy for me. And 12 pax chemos, 2 operations (mastectomy and snb) then 2nd for total node clearance on right and 1 reconstruction to come. Now on Tamoxifen awaiting reconstruction. At first swimming was strange and a bit depressing as it felt like I had lost my arm but the more I swam the more it came back. And now apart from numbness in armpit it feels there and strong. I do a mile twice or three times a week but I built up to that. I would imagine any exercise that builds up strength in arms would work. Though I do find front crawl harder than I used to, I used to always do front crawl, now I only do a bit of that and most breaststroke and backstroke but I can live with that. And I love the jacuzzi, sauna and steam room and just having time me and DH alone, I dragged him into my swimming but now he's gone from struggling to swim to doing about 1km each time. It really helps my mental health which has been struggling with cancer then DS in hospital for 8 months. Now out and home but lots to sort with that and a very frustrating system which ignores the child and parents views. Swimming gets it out of my system. I also canoe and row both those are good too but summer based. I watched a very inspiring film on Netflix today called Maiden, round the world boat race by first female team, she had been kicked out of school.

The swim prothesis I got from Amoena when they had a sale on and was about £30 each and got 2. I actually prefer them to the more expensive ones as they are waterproof and fit just as well. The aqua knitted knockers are a lovely idea but didn't do much for me, very kind of them though. Some people use a shower scrunchy to save money. Swimming costumes George at Asda do post surgery ones very cheaply, I have to size up 1 size but always have to with swimming costumes. I also have some rash vest and swim shorts suits which are great esp if outside and a wetsuit but only used that once as its so heavy.

Uff, you'd think by the third time I'd be less nervous but no...I have nervous belly again 🙄

Thanks everyone for your posts about my first chemo yesterday (and my mum and my Camino). I slept like a log last night and have woken up feeling a bit jittery but fine. I'm just studying the helpful spreadsheet the pharmacist gave me to tell me what anti-sickness drugs to take and when and hope it stays that way a little while. Either way, it feels much better to have started rather than the awful waiting. Still feeling a bit frustrated about the cold cap but I honestly don't think there was anything else I could have said or anyone else I could have talked to about it without getting forcibly ejected from the unit. I strongly suspect I'll be rocking the Gollum look by my next treatment but it is what it is...and the sun is shining.

Hope everyone waiting for results manages to keep occupied...it honestly is the worst thing. Walking is my solution for everything. X

@Atreus you might be surprised by your hair - I'm 3 weeks in & from what the other ladies I spoke to, and consultants said, I expected my hair to have gone by now. It's definitely thinner, & I'm leaving a trail behind me wherever I go, but it's clinging on for the minute!

@Therocksword I had the period stopping and then starting again thing before I was diagnosed with endometrial cancer, but I also had non-cancerous fibroids and polyps, and I don’t know which thing caused it. I should’ve got it checked out sooner really but I just thought that was a normal thing that happened in perimenopause and it’s been very difficult to get doctors appointments since Covid, so I didn’t bother. Eventually I started to get a very watery discharge, which I understand is quite distinctive of endometrial cancer and that was what sent me to the doctors. I’d still be interested to know what the period stopping and starting again means.

ooo thank you @Icantfindanewname the drain bag is a good tip and I've found some on Etsy, I just assumed there would be one drain so thats a question I need to ask! Sleeping on my back is going to be a problem, gives me backache, I might need to sleep sightly raised for a bit, hmmmm. I also snore (apparently :)) Thanks @Silkierabbit I will have a nose around Asda at the weekend and see what they have. So glad you had a positive experience @Atreus can make all the difference sometimes.
Thanks @HauntedDishcloth I did see some on the M&S website yesterday that were "flexible" but they were done up with LOTS of hooks and eyes and I'm not convinced I'll be able to handle that. I'll see if I can find some zip ones. @Therocksword hope your result is nothing sinister, I also feel like an imposter despite my cancer diagnosis because I'm not ill with mine (yet), I have breast cancer. @Makemineadecafplease ooo thanks, I will look up heart pillows!

Keep on going everyone! x

@Therocksword I'm so sorry you find yourself here and you're most welcome. By way of encouragement, I have ovarian cancer and my CA125 at diagnosis was 1115, if yours is normal and other bloods don't show anything worrying, this is very reassuring. Your lump which can be felt from the outside does sound like a fibroid. On top of my cancer, I also had several fibroids, one of which measured 18cm and came right up to my belly button. It does sound like this is the case for you and would account for the urgency to wee which I had. I also had bowel urgency - the fibroid must have been pressing on both. For your periods being start/stop, could this be due to hormone changes with an approaching menopause possibly? The menopause can take 10 years to 'run' so it could be this. Please feel free to ask me any other questions you may have.

@SummerCycling thank you! I feel really really crappy today.

I don't have breast cancer, I have melanoma but it has spread to my lymph nodes so they removed them all.

For whoever is asking about lymph nodes I had a complete dissection in april, and I've had a lot of nerve pain but no lymphedema. It was incredibly painful but I got a mastectomy pillow with a cold pack from Etsy. I don't use it anymore and I'm happy to send it to someone else?

@Fantasea thank you.

yes, also bowel urgency that’s how it all started.
I am reassured by the low ca125 but then I read other things and have a minor panic. I had full hormone panel and all have come back post menopausal so unsure if that means I’m in peri? I’ll ask my gp about it. I am hoping that it is fibroids and mostly ok just having moments of what if it’s not. Yesterday I had ‘ what if it’s not’ for the whole day hence posting.

Sending solidarity and sympathy @FangedFrisbee . On bad days it’s a matter of getting through hour by hour. Just think what a shock those melanoma cells are getting today! Die little bastards die!
I am paying for my lovely day yesterday. I woke up at 1030 still exhausted and as DH is away I am having a lazy day today. My bloods were all perfect and the cheery chemo nurse has authorised round three of Cape little understanding what a slog this is. I am exploring a lovely website called seasoulblessings.com which is all about the benefit of spending time by or in the sea. I shall go and sit with a coffee in the garden and try some journaling this afternoon. The tide ebbs and floods and things will always change.
I think I need a break from FB cancer groups as I was getting impatient today with newbies who are scared to have a PICC line and that is unfair and unkind of me. I didn’t post anything but stepped away. I’ve just been hanging around too long!
Sending strength to you all
Top x

I havent joined any groups apart from this. Macmillan and cancer research forums look very quiet. Ive just had my picc line dressed two more times to go then I have Glastonbury with it. The side effects after round five have being more full on. Ive smashed two plates and one glass im just so weak with my hands. I hope its not long term or I’ll never
beable to give drugs at work again! I wish I lived by the sea but Im the opposite in London. I havent heard from my friends half as much as I used to. I suppose they dont want to disturb me and I cant be bothered to go out and about. No one rings anymore, do they?

@EachandEveryone the friends thing is very unsettling. Some good friends have ignored me and some previously little known friends have been brilliant. I’m on my own this week and trying to decide whether to summon some company or just rest. I know they would come round if I invited them but I’m a bit too tired today.

@EachandEveryone My elderly Aunt is the only person who rings me :)

@TopOfTheCliff I haven't joined any FB cancer groups, I find people on groups on FB tend to be a bit on the aggressive side :)

I’ve joined a few Facebook groups, but have unfollowed them all - so that I can choose when I see the posts.

My first chemo for primary peritoneal cancer is next Tuesday. Someone said ‘I can’t believe you’re looking forward to it’

Nope - not looking forward to it- but want to start the fight back!

Love to everyone x

Hope the first chemo goes well @RedRosesPinkLilies. It definitely wasn't as scary after the first time.

I had to leave the FB groups for my specific cancer type - it did seem to get a bit competitive over who had the worse experience to the point where people were terrorising each other about the horrors of canula insertion. Reassuring messages were drowned out with a litany of medical disasters and poor care and it scared the hell out of me. Thankfully my experience so far has been much better than expected.

Hoping to join you, 2nd time trying to join - apologies first - this will be rambly - I'm not the best using MN (don't do Facebook at all)) and can go weeks without posting but try and read various threads on MN every day or so but since January when I was diagnosed (huge shock as picked up via mammogram and I had been having them for about 7/8 years )

I have found this thread and the kindly people on it super helpful - I plucked up the courage to post once a few weeks back,can't now find) and lovely people welcomed me - I feel a bit of a fraud joining in as firstly I have no helpful advice & secondly as I feel so well and despite being told I have breast cancer compared to lots of ladies on here I'm pretty lucky that it's been caught very early and surgery etc has gone really well - that said I would like to stay on here (admittedly haphazardly posting) as I'd like to ask you knowledgeable lot some questions but also as I feel like I d be among people who get it - as lovely as real life people in my world are (a couple who have not been !) they don't know what's if like however hard they may try - and they are super supportive but unless those words have been said to you I don't think your fully in the "gang".

Anyhow I was diagnosed with invasive lobular bc in January - I had a lumpectomy (or breast conserving surgery as they refer to it) and a sentinel node biopsy in mid March .

Everything went really well , I had a couple of weeks off work) but apart from tiredness and the expected swelling and discomfort/odd shooting pains it's been good. Have had an infection in breast treated by antibiotics and my skin has changed hue in that area- hopefully temporarily.

I had genetic testing which all came back clear - oestrogen and progesterone + and her - . The tumour was thought to be 1.5 cm but was actually 2.1 cm and I have been classed as Stage 2.

None of the lymph nodes were cancerous and my margins were clear . They also did "genomic testing (sp?)"and I came back low risk - Ijam incredibly thankful and I know it could be a whole lot worse .

I am 2 weeks into letrozole daily tablets and am waiting for radiotherapy. I think the waiting for results and knowing what will be has been somewhat harder than I had imagined - it had "messed"with my head -trying to be calm and positive but not always the easiest when waiting for the results for ; weeks , 5 weeks etc,

Anyhow my initial questions - my radiotherapy planning and dvan is this week and I'm getting quite nervous about it - especially the holding breath but (my cancer is in left breast) - I'm asthmatic and I'm not sure I can hold my breath for 30 seconds - I probably could but it's like going into the MRI machie and being told to keep still you immediately want to move ...

Is it a long time to wait for radiotherapy ? By the time I have it I think I will be 14/15 weeks past surgery - it seems like a long wait

Anyhow thank you if you got to here and sorry for ramble - I feel less anxious having written it down.

@ClashCityRocker thank you. Yes, that’s my impression- first time is the big unknown
@BeaLola I am sorry - all very very stressful. I don’t have BC, I know you’ll get good advice from others. X

@BeaLola

Wow, low risk, stage II, HR+ HER-neg, not in the lymph nodes etc that is all great! I mean in the context of BC. Mine is high risk, high grade 3, HER+++, HR-neg, multiple cancerous lymph nodes, so back to front from what I'd hoped before the biopsy results..., not that we should compare ourselves as the doctors keep saying. But I hope your more detailed info in your diagnosis comforts you at least a bit in your journey with BC because as you said, the features of yours are what best case scenario is, I think (except for dcis or completely benign of course!) xxx

I also have asthma. Been on steroid and LABA inhalers for a very long time, under respiratory at hospital for that and for allergies. I was concerned too about holding my breath in radiotherapy, but it was completely fine. I practised it at home a few times, so breathing in and holding my breath for up to 20 seconds. 20 is the maximum, sometimes it was less. I don't think it will be 30 seconds, or I'd be surprised. They targeted 5 areas on my body including my neck and I did 15 sessions.

Regarding your wait for radiotherapy, I suppose they maybe prioritise according to threat of death? At the hospital where I did radiotherapy, during my 15 days they changed their IT system over one Friday, and everyone's radio appointment was cancelled that day except for people who'd risk dying if they missed a day. I missed that day, so even though I was given a starting date as soon as I recovered from the seroma, I wasn't at such risk that missing a day would make a difference. What I mean is, with your low risk they might triage you a little further down the list (?)

Feel free to ask me anything you want about doing radiotherapy as an asthmatic. Actually, I also have experience of doing breath holds in an MRI, which also went fine. I took diazepam for the MRI, and also a tiny bit for radio - you might like a little bit of that the first few sessions so your breathing is less affected by stress?

Thank you red roses 🌹 and Summer Cycling 🚴‍♀️ thank you very much - I'm sorry about my Me Me Me post - on the surface I'm Mrs upbeat and Im So Lucky because I do know it could be a whole lot worse - the first person I saw who broke the news that it was cancer in the next sentence said it's been caught incredibly early - probably 2 no more like 3 years earlier than if you weren't having yearly mammograms - I am lucky I know but in a selfish monent I wish I hadn't heard the words.

I can do 20 seconds - I have a list of questions for the people at the scan /planning - poor them !

Up until now in life I haven't taken any vitamins of multi vitamins- wondering if I should start ?

@Silkierabbit

Thanks for all your very helpful info and tips! xxx

Good for you snapping the cording and getting rid of it💪 that's so great you did that!!! I didn't get that (not yet anyway) but had a lot of trouble with fluid post surgery. Litres and litres full of it. I got so anxious it was awful, but it finally stopped after a couple of months of weekly draining at hospital.

I know a lot of BC patients like you only have 5 days radio instead of 15, but AFAIK it's only done like that for the hormone positive, HER-neg people. They don't seem to reduce from 15 to 5 for HER2+++ or triple negative patients, or at least not for those of us at stage 3. My 15 sessions were 40 gy and I think 5 sessions is 16 or something(?) NB I could absolutely be wrong about the gy being less in the 5 day regime.

I was also supposed to have 12 pax (after my 4 cycles of EC chemo -EC was an absolute horror show) but I stopped early due to side effects.

Three surgeries? wow, I only had one operation, they removed all the lymph nodes at the same time as the mastectomy in my case. I hope your reconstruction goes well.

You're amazing doing all that swimming. i wish I could get into a routine like yours. We haven't got a swimming pool near enough to get there on a regular basis, but your post has really inspired me to look into it and try. I will start by getting my prothesis and swimsuit sorted - on the beach the last few years I liked wearing surf shorts with a bikini top, so that will have to change. I'm also much, much fatter than I was before cancer treatment started last summer. I am a coach potato and eating too much these days.

I understand totally about your mental health suffering with the cancer. Mine has/ is too, a lot. I've lost my confidence to do a lot of things, and my anxiety and mood are affected, especially at night. I am still on 2 immunotherapies, which do list insomnia among the host of other side effects like heart and lung failure (why I get heart echos every 3 months). I won't be on tamoxifen like you though, which i think lasts for several years? Once my year's up of the immunotherapy my treatment plan will end (it will have lasted 15 months from starting chemo to final immunotherapy jab).

I'm so sorry about your DS.

@BeaLola welcome back. Everybody is welcome here; you don’t need to be a bad case to understand the Fear. It’s still cancer even if it’s picked up early. I glad for you that they don’t think you need chemotherapy. Radiotherapy is quite interesting to go through and the breath holding isn’t as hard as you think. If you do any yoga breathing that will help, but even if not then a bit of gentle hyperventilation before the session starts makes it easier to hang on. I didn’t have to go beyond a count of 17 with my left breast treatment. They started with 3 then 5 then 10 then 17. I didn’t get any bad side effects, just a mild sun tan and some tiredness and I still have a slightly tender boob 4months later.
I don’t think the delay matters as all your cancer is out so it’s just a preventative measure for you.
All well at Tops Towers. DH is away having fun so I am quietly tidying up stuff. Even with 15 minute bursts it is looking better. There is a long way to go though. While I have been ill he has caused chaos but he has taken great care of me so I forgive him a lot. Also my garden is looking better for some attention.

@FangedFrisbee

Sorry to hear you feel so crappy today xxx

And also that the lymph node dissection caused so much pain.

I like what Top said, "Just think what a shock those melanoma cells are getting today! Die little bastards die!"

I am also hoping those melanoma cells DIE!!!!

You've got several of us here hoping that! x