Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

@KentishMama

I just had the lumpectomy (well, 2 wide local excisions) plus sentinel node removal on Saturday.

Bra - I have a Royce front fastening post surgery bra which is very comfortable. It fastens with press studs rather than a zip, I did try the M&S ones with the zip but I am a G cup and they were prone to suddenly unzipping themselves which wasn’t ideal. A sports bra might also be fine if you’ll have help available for getting in and out of it. I would aim to find something which will reduce movement in the breast area while avoiding any wires or rough edges that might dig in.

I didn’t have any drains and actually no stitches or dressings, just surgical glue holding the three cuts together which seems very secure and I can even shower. Other surgeons might do this differently so definitely a good idea to check with the bc nurses what to expect from yours.

Pain levels - not bad at all, actually I would say less than with the portacath and marker insertions I’ve had previously. They loaded me up with painkillers / anti-inflammatories to take this week and this is fine. I’ve got a tiny v shaped cushion to put under my arm on that side which definitely helps make it more comfortable.

I have had stomach ache from constipation until today despite drinking lots of water and taking the prescribed stool softeners, so worth having some senna/prunes to hand.

The worst thing by far has been the heat!

Ooh my message got chopped in half!

@InOtterNews that’s sounding more positive, enjoy the calm bits

I’m feeling so much better this time after round 2 FEC I must be used to being poisoned 🤢

Best wishes to all
TopO

@Bloodybridget. So happy for you. 💕

BOF

I got called back from a neck to knees CT scan because they’d seen something in my liver. Turned out to be a benign cyst - something that is very common. They rescanned need a couple of times to check it was going away spontaneously. And it was very obedient and did just that.

I was utterly terrified when they first said they needed to look (as I got the MRI bookers before the specialist nurse, and they were clearly trying to fit me in to first available slot). It was all at the time of my first diagnosis, so it seemed like one set of terrifying worries after another.

It might not make it much easier, but I do know that not all things seen in the liver are Bad

@Piggles39 THANK YOU!

I needed to hear from someone in the same boat, and I'm going to buy one of the bras you mentioned. I'll ask the Consultant about drains and sutures when I see her on Friday morning. Hope I can get the same as you!!!

Wishing you a speedy recovery - very encouraging to hear how good you (seem to) feel less than a week later :)

I’m OK today

Back on the leukaemia treadmill as I had round 1 bloods drawn (for specialist tests which take 3-4 weeks to run and are they key ones in telling me whether I’m OK) and booked my ECG. I’m on first name terms with the phlebotomists at the hospital satellite clinic, so we had a nice chat about DDog and also DD’s forthcoming GCSE results

InOtterNews - so glad you get a bit of respite from house arrest before it all kicks off again. Where I walk is not particularly lovely, but it’s been so good for keeping me on an even keel!

Thanks guys, I knew I could rely on you

Kentishmamma I had my surgery in March same type of cancer as you and mine was directly behind my nipple aswell! The surgeon was unsure if he could save it but he did theres hardly any scar now and a tiny dent just above my nipple. A friend of mine had her nipple removed last year shes having one tattooed back on
I had a lumpectomy and 5 nodes removed so have a scar under my arm aswell I was fine the next day I went out shopping.
Im 38 so close in age to you I had 2 lymph nodes affected so have spent the last 17 weeks having chemo next week is my last one xx then radiotherapy after.
If your worried about explaining to your kids ask your breast nurse if they have a medikidz book to help explain

Hi ladies sorry Ive not posted in a while but I have read back xx so many new ladies xx

Abraxane is kind on one sense and unkind in another. Im not as tired as I was on EC but the bone pain for the whole week after is savage. I was sent to A&E by the red card nurses and they asked what pain meds I was taking paracetamol....so they gave me morphine I want to say its lovely but it just makes me feel nothing. I dont swallow right, I don't strain to poo and I sit there like a lemon all day long. So my lovely GP prescribed naproxen for me that helped. Then this week I've had bad hand pain so I though I'll phone lovely GP again with his lovely voice and he said I have peripheral neuropathy and has prescribed gabapentin. So I'm living my best druggie life but I'm pain free and I'm also never tired

Hey Lurkey! I still have Pregabalin (it sounds like vitamins for expectant mothers!), but the hospice doc called to check on me today and swapped out my Oxycontin for Naproxen. Is it any good? I can't feel much difference on morphine either, which is a shame because I was quite looking forward to it .

Hey @Lurkeycakewoman - thanks, great to hear more experiences like mine! I'm going to chat to the consultant re: nipple tomorrow morning. I think if there's a higher than ... maybe 30% (?) chance that she'll have to remove it in a second operation, then she might as well get rid of it on Monday, I think. I've been googling nipple tattoos and they look a lot better than I thought, so that sounds like an option!

Re: Chemo, are you having Chemo because your cancer is HER+ve, or had it spread to a few lymph nodes? At the moment the consultant said it's really unlikely I have to have Chemo, but I am trying to get ready for her changing her mind on it. I'm starting to realise that they add a bit more horribleness at every appointment.

MRI and sentinel lymph node biopsy results tomorrow morning at 8 am, and I feel sick when I just think about walking into the clinic tomorrow. At least they said I can bring DH along tomorrow morning -probably so he can take charge if I turn into a sobbing mess again, but what they don't realise is that it's more likely he will be the mess and they have to pick him up from the floor.

Bit of fun naproxen is good it just doesn't last long enough some days but it can be took with morphine so I have 1ml if the pain is extremely bad and deal with the lemon head. The nurses said it all about finding the sweet spot of when to take them. I havent found it yet

Kentishmama I needed chemo because of the lymph involvement I was told before I probably didn't need chemo. Because of covid I got sent to Birmingham because my local hospital stopped chemo. The oncologist suggested a clinical trial and so my 4 chemos turned to 6. My her was negative XX

I've been allowed take my husband to all the important appointments he hasnt been able to come to chemos or blood tests etc but he waits outside for me

@Lurkeycakewoman Ah yes, that's what I'm worried about - I'm desperate for the lymph node biopsy results to be clear tomorrow, but I think even then they'll remove a bunch of them and might still find cancerous cells once they look at them after surgery, right? The waiting is driving me nuts.

Hello all, hope everyone is ok.

@KentishMama hope all goes well at tomorrow's appointment.

@BitOfFun thinking of you, hope it's not long before you can have a scan.

I had my PET scan today so that's all tests done now, just got to wait for results. Because they want to wait for the results from the extra biopsies they took yesterday, I won't see the oncologist to find out results and plan until the 25th. I thought when the PET scan moved to this week I'd be able to get a plan next week and this feels like a big setback. I know we'll manage but the idea of another nearly 2 weeks not knowing if it's stage 4 or not doesn't feel bearable at the moment. I feel tearful and a bit hopeless today. I guess this is inevitable after the shock of diagnosis etc, hope it's ok to vent a bit here.

@Lubballoo Sending big hugs. Of course you are in massive shock, and having to wait for results is just the worst. I'll be thinking of you, and hope you can find ways of keeping busy until 25th (if that's what works for you!).

@Lubballoo, the waiting is the worst part, it really is. Once you know what you're dealing with, you can plan.

Even at Stage IV, the doctors told me that it can be managed, like diabetes or heart disease. Once they get a treatment routine that works for you, you could have years and years.

I think my treatment has unfortunately nosedived once I had a very rare reaction to the bone strengtheners and had to come off them and the chemo tablets. COVID-19 hasn't helped either, as this is months later now, and I'm still only on monthly hormone-blocking injections and the daily anti-oestrogen tablets, which doesn't feel like enough, as I'm starting to get metastases all over the place. This shouldn't happen in an effective treatment regime, which you should get.

Anyway, that's the worst case scenario, and we don't even know that's where we are yet! We will hold your hand whenever you have a lip-wobbling moment.

Thank you so much @BitOfFun, that perspective really helps. There's been quite a bit of lip-wobbling today and the hand hold is so much appreciated. I'm so sorry you're having to deal with all this - and in the midst of it all you've really helped me, thank you.

@KentishMama thank you for the hugs. I think keeping busy is what works best for me, you're right I should focus on how best to do that. I came home from the hospital and went to bed this afternoon, I don't think it helped!

Consultant appointment today, before my surgery on Monday.

So as expected, they decided to heap some extra shit on me (will I get thrown out of Mumsnet for bad language?!)

The MRI shows that the 4mm tumour is more like 10x7x8 mm, and so close to the nipple that the nipple is going. But still lumpectomy rather than mastectomy.

The lymph node biopsy shows that there was a 3mm macro metastasis in the node. This was a needle biopsy, so just one node checked. So instead of a sentinel lymph node biopsy on Monday, it's now lymph node clearance. But the consultant said there is a good chance that only one node is involved, so this might be 'over therapy-ing'. So I made a weird / drastic decision and asked her to just remove level 1 lymph nodes for now, and see what those are like. I'm really worried about lymphoedema, which my grandmother struggled with for many years. Don't know if I'll come to regret that, but... Hey. Worst case they are all cancerous and the surgeon can go back for more, right?!

Sounds like chemo is getting more and more likely now too.

I'm a mess. I can't talk about it without breaking down, and I am a million miles away from being able to tell my 5yo DS what's going on, and that I'm going into hospital. I really need to find some strength somewhere inside me, NOW.

@KentishMama I'm sorry to hear that, it is completely shit to get yet more difficult news. I think it's really important to be actively involved in treatment plans wherever we can, really well done for that- and as you say given that they can go back for more, why not limit the potential for other future problems right now. I think it's pretty impressive you were able to engage, there and then, at that level with your treatment so I feel sure you'll find the strength you need when you need it. Right now might not need to be that time though, be gentle and kind to yourself if you can.

@KentishMama I'm sorry to hear that too, but agree with @Lubballoo that it's good you've made your decision and know what's going to happen.

It is so hard to tell children, but my experience has been that they are very accepting. Everything happened rather back-to-front for me, as I had to go in for emergency surgery, and then got the cancer diagnosis, but my children (my youngest is 6, so similar to you) have accepted a simple explanation that I have some "bad cells" and that the doctor needed to remove some areas, and that now I'm on tablets to try and mop up any that might still be there. The older three have heard of cancer, and have had more questions based on age / personality, but we've just answered those as they came along (often at the wierdest moments!) and the 6 year old seems to have forgotten that I've even been poorly, except for his ongoing fascination (entirely positive) about my stoma.

I hope that you can enjoy the weekend and store up lots of cuddles, and I'll be thinking of you on Monday. I agree with others above, that waiting is the hardest thing.

@Starmer Oh my - your 6yo's fascination with your stoma makes me think that there is a 99.999% chance that my 5yo will become obsessed with my new nippleness boob. He somehow has a boob obsession anyway and seems to sleep best when cuddled up to me with a hand down my top. He's a weird child, what can I say...

This thought has made me grimace smile.

Yep, @KentishMama. I think that's likely then .

DS3 is my tummy obsessed child - hand on my tummy whether we're having a cuddle, watching TV, or in the middle of the supermarket! The bag confused him for a day or too, but he's just switched to the other side. And he is SO proud of my stoma on my behalf (I am, understandably, rather more reticent about telling the world about it). DH took the children pony trekking when we went on holiday between my surgery and starting chemo, and apparently he was telling the woman leading his pony all about how I had a special bag that I poo into . Just glad I was a few miles away resting in the holiday cottage!

I really need to find some strength somewhere inside me, NOW.

@KentishMama please, take it from someone who's supposedly been 'coping really well', it's absolutely ok to fall apart. Medical staff keep telling me that I have a great attitude and it will only help me, but honestly, it's just the way I am apparently. I seem to be a total Pollyanna under the surface to the point where I'm starting to worry about myself - which is also pointless!

I couldn't have predicted my reaction and it might not last (I certainly expect to be feeling extremely sorry for myself after the operation, especially but certainly not only if there are complications and all that jazz.) Just let your feelings right now be what they are. It doesn't sound at all odd to me that you can't talk about it without breaking down! This cancer thing is terrifying and it's awful and it's inconvenient and a thousand other fucking awful things. There's absolutely nothing wrong with feeling all over the place. It's just how it is.

Sometimes strength is just taking it minute by minute or even second by second.

Remember you're not alone

Kentishmama I remember feeling like everything was out of control 😔
Its so hard to pull yourself together. Im like Lucy they tell me I'm coping really well. I never feel like I am the picc line bugs me I sleep proped up because I'm afraid to lay in it or catch it in my sleep. I had a panic attack back at the start after the first chemo. I ended up in A&E after my first abraxane cause I felt different after that one.
But honestly chemo is scarey shit but its really not as bad as I was expecting Ive been tired Im bald I've been in pain I've felt nauseous but its still not as bad as I expected and the nurses have been fantastic really they are my strength they pick you up when you feel so crappy nothings too much trouble. And there are drugs for everything bar tiredness

I don't post very often now but just popped in for a catch up.
@BitOfFun I have taken Naproxen for pain relief from Rheumatoid arthritis and I find it more use than codeine which does nothing for me. It can upset your stomach though so I was told to take omeprozole as well.
@iVampire sorry to hear you have a breast scare on top of everything else.
@Minxmumma that is really dreadful news. How can it go from zero to stage 3 in a year!
@Bloodybridget hope respect for your continuing brilliant efforts on this thread, I hope you have a lovely weekend.

In some ways I feel lucky I went through all this before covid but actually it has managed to impact my treatment even though I was diagnosed in July19
I am having lots of anniversaries at the moment. A year since I found the lump, a year since diagnosis and soon a year since surgery. I should have my one year mammogram and appointment with the breast surgeon this month but tey are behind (covid).
I had a telephone appointment with the oncologist this week. The elusive oncologist who I saw only ONCE throughout treatment. My herceptin was cut short in April after 9 doses. I never saw a doctor was just given the message that it was stopping at 9 because of covid. I later found out that friends in other parts of the UK were continuing for the full 12 months. I asked him about it and he said it was because my other health conditions made me too high a risk v covid.
My other health problems are still affecting day to day life. My RA was in complete remission before chemo but has never got under control since. I've just had pneumonia and now I'm struggling with side effects of a new RA drug.

Whoever posted about Movicol I agree it's evil. I find lactulose more "predictable" and was given that plus senna on chemo.