Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Hope this is a good week for everyone, and that all the cancer goes to hell!

Saw a consultant privately end of last week, as my wound is still open and deep since the radiotherapy split the scar in December, following surgery in September. Such a pain. I think he was quite shocked with what he saw. He is arranging a scan back with the NHS team, and thinks a 'clearing out' operation might be advisable. He is off on holiday on Friday (what a cheek!!!) but my own consultant returns the following week, so he is going to make his suggestions to her. Worried I might be in trouble for going elsewhere, but I'm getting very fed up.

At least I think there's a tentative plan - although subject to change, as always!

@SummerCycling my first BC was a triple positive IDC grade 3 with lymph node spread. I did the whole Herceptin thing in 2020. I'm nearly at three years on from diagnosis now and it seems to have been stopped in its tracks. I had FEC-T with my Herceptin and Perjeta. Then after I recovered I got an unrelated new grade 3 IDC BC on the other side that is TNBC. I do feel special. I'm almost through the second cancer triathlon, I just have 6 months of oral chemotherapy with Capecitabine left to get through.
I don't think there was much different about being HER2 except that I had to go back every 3 weeks for the full year of Herceptin. It didn't seem too bad after the IV stuff. Hopefully I will feel the same about the tablets. Nothing is as bad as the dose dense full whack of iV chemotherapy.

@ajandjjmum well done for getting a second opinion. I sounds as though your first surgeon has been letting things slide a bit. Hopefully the second option will gee her up a bit. You could ask outright whether she thinks a "clean out" would speed up healing. Fingers crossed for you

I had a wild old time with DM89 yesterday. I went to take her to visit her DSis92 who is fading away and found DM all set to drive us 80 miles. She was so excited I felt I had to go along with it. It was a nerve racking experience and she would have got very lost without me there being the human Sat Nav. I almost lost it at one point but realised this might be her last big drive and she does love it. I thought I might die in a horrible crash and all this cancer nonsense would have been a total waste of time. Luckily she let me drive home afterwards. It does seem sad that in just a few years time all my elderly relatives will be gone and their houses sold and we will be in a whole new world. Soon they will all be forgotten.

Just heard my ferry to France is cancelled because of weather. Just my luck! Damn damn damn. I was really looking forward to going abroad for the first time in 4 years. Maybe we can still rejig things.

Sending strength to all
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Hi folks, been lurking for a while and decided I need to join in to share and get tips etc. I found a breast lump after xmas, diagnosed in feb, Her2 positive, ER positive, Grade 3, stage 2. Getting chemo first, 4 rounds of EC then 3 of pertuzumab (sp?) and docetaxel, then surgery, then radiotherapy.

Diagnosis wasn't too scary as the huge emphasis was on "its treatable/curable" but treatment is very hard going so far. Had 2nd cycle just over a week ago. And yes to the whole "you're so brave" thing, I didn't feel brave, just have to do what needs done but now that treatment has started I do feel quite brave for going through with it as its so shit! Was all for giving up at the weekend, I have had depression previously and it was starting to take hold, a visit to hospital and some better anti-sickness meds and I think I can do this.

In awe of all your fitness achievements and hoping I will get back to similar eventually.

Advice for hair? I have been letting it fall out, I had it cut shorter (chin length) after diagnosis but its been thinning drastically the last few days. I'm wearing scarves/hats but can't sleep in them. I have a teen DS and I'm aware the very sparse hair is a stark reminder what I have going on, do I shave it? I've heard stubble falling out is jabby so not sure whether to just wait it out.

Thanks and sad as I am to join the club, you seem a very friendly supportive bunch

Oh that's rubbish about your ferry @TopOfTheCliff. I hope you might be able to engineer an alternative plan. On the other hand, well done for surviving your DM's driving - gosh, that's like the anxiety of being driven by teenagers, but at the opposite end of the spectrum.

@SummerCycling - I'm sorry you find yourself here. I'm HER- and ER+, but otherwise similar in that I'm Grade 3/Stage 3 and had to look at the words 'poor prognosis' on my diagnosis. Tbh, I mainly try to put that out of my mind and just keep plodding along through the treatment - I've had surgery and chemo, and been waiting for what seems like ever for RT (finished chemo 2 months ago now).

@Catswithhats - it must be hard facing all this with a history of depression. I have no previous MH issues to speak of, but have felt very low at times. And then positive and cheery at others. EC chemo specifically seemed to cause massive gloom for me around day 6/7 of each cycle. I really found exercise helps me cope, and managed a walk pretty much every day through chemo - but each to their own. Don't feel bad if you need to watch boxsets on the sofa...On the hair, I got a friend to give me a buzz cut when the shedding got annoying, and felt better for having taken matters into my own hands rather than watching it go. My teens tell me I look cool, and I mainly try to believe them. (I have worn a lot of hats while it's been cold, and got a wig which I hated.)

Sending you both lots of strength and good wishes - do ask whatever questions you need to, or vent and rant away.

Hi all, it's my operation tomorrow, really nervous if I'm honest. I'm having sentimental lymph node biopsy done, on the right

had the scan to find out where rhe melanoma would have drained to, today. That was horrible! Apparently one of the nodes is on top of my boob so that was unexpected.

Then wide local excision on my neck on the right hand side, and wide local excision on my left shoulder, then lymph node clearance on the left under my arm. I'm also having a skin graft because it's on my shoulder and It won't come together properly which is a shame tbh.

Who knows if I'm staying over night or not I'll pack a bag tomorrow just in case!

It's horrible being a patient at the place I work. I hate it.

I misread my letter too, i thought I had to be there at 7.30 but its 7 so that means a 4.45 get up tomorrow morning. :(

Wish me luck ladies.

I'm going to be leaving hospital in my pjs I know that for certain!! Not fucking around with jeans after surgery 😂 I've got a nice new dressing gown so I can walk to the car looking like a glamorous tramp as I walk down the streets to the car 😂

@Catswithhats Welcome to the thread. I've had a similar diagnosis/treatment plan to what you're going through. I let my hair fall out as I couldn't face shaving. If you just let it take its course, make sure you do comb or brush at least once a day to prevent matting. You can get specific headwear for sleeping - they're like very lightweight, smooth swimming caps but in breathable fabrics & some have little design features so they don't look hideous.

@FangedFrisbee good luck tomorrow and with your early start too. I always think at least I will catch up on sleep with the anaesthetic. I smiled at the sentimental lymph node. I know you meant sentinel but it sounds much nicer.
They wouldn’t do a total node clearance both sides I don’t think. I was told after they had cleared the right side that they would only take a few from the left. Luckily none were affected.

@Catswithhats welcome. I think being depressed is a very rational response to a life threatening illness. My insanely optimistic denial is a very convenient habit that has seen me through hell and back twice but I do occasionally wonder at how I manage to ignore the reality of my situation and keep cheerful and smiling when a sane person would be crying at night and taking to the bottle. I keep poking around my subconscious to see if I’m secretly miserable but it seems the defences are impenetrable. I expect I’ll have a breakdown once the clinic discharges me.
Regards to all
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@TopOfTheCliff haha that'll reach me to proof read!! However I like it so I may keep it as sentimental node 😂

Good luck today @FangedFrisbee, let us know how it goes

@SierraSapphire thank you x

Thinking of you @FangedFrisbee . That’s a lots of incisions. You’ve definitely earned your dressing gown in the car home.

@FangedFrisbee your sentimental lymph node also made me smile this morning. Really hope all goes smoothly and somehow I just know you'll rock the dressing gown look.

@FangedFrisbee thinking of you this morning and hope everything goes to plan Xxx

The day of reckoning is here. Im taking a slow walk to the bus stop 🙂

Another HER2 positive over here too! In fact, my diagnosis and treatment plan is very similar to yours @Catswithhats but I’m just a few cycles ahead of you. About to go into round 5. It’s good to hear you are coping with treatment so far.

@FangedFrisbee good luck today. I love the sentimental node…made me smile this morning!

We managed to get away for a couple of days over Easter. It’s been great to have a change of scenery but boy I’m tired! I could sleep for a week. So far my girls (3&8) haven’t seen me without a hat or headscarf so it was a bit tricky in the hotel room sleeping in one. I can’t wait to get home and girls to bed so I can waft my bald head around freely!

Im due to start the dreaded dox next week. Did anyone invest in the glove packs - did they work? Any top tips for it…I feel really apprehensive about changing from EC - I knew what to expect but going into the unknown now. I can’t believe how many steroids I need to take! Eek…I’ll need scrapping off the ceiling!!!

Scraping even!

@EachandEveryone - thinking of you.

@Whattodotomorrow - re the cold gloves and socks, I bought some and tried them out at home but didn't actually use them in the end. I found them really uncomfortable (I have mild raynauds) plus the logistics would have been tricky as I had my cannula in my right hand and was also unsure about keeping them frozen etc. I got a lot of pain in my finger tips while I was on dox but it has all passed now, and I was never sure whether it was neuropathy or just swelling. (I still have dry/dead skin under my nails, 2 months on from my last dose.) I think PN is slightly less likely with dox than with pax. If you or anyone else wanted my gloves and socks, I'd be happy to post them to you if you wanted to DM me your address (but of course realise you might not want to do that). Apart from the nail and finger pain, I generally found dox a bit easier than EC - much less brain fog/wooziness, so don't despair, not everyone finds it dreadful. Good luck.

Hi @Whattodotomorrow I bought Halo cold gloves and socks off Amazon. They were very comfortable but didn’t last much more than 45 minutes with my hot hands. I took a spare set of freezer packs to swap in at half time. I didn’t get any neuropathy with paclitaxel in my hands but my middle three toes on both feet are still numb. It’s not much different to last time round when I had docetaxel though, I had very mild numbness which wore off after a year. If you would like the gloves and socks DM message me and I will post them to you as I have no intention of going through chemo a third time!
To be honest I think four buckets of ice to dunk your hands and feet in would work better but the ward hasn’t got its act together yet.
Looks like my French trip will happen but be a day shorter so at least I am still going.
Je vous envoie tous de la force
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Thinking of everyone coping with surgery and results - it's a horrible path we're all following, but 🙏for sunlight at the end.

So 7 months after surgery and 4 months after completion of radiotherapy, I had a vaccum dressing fitted yesterday. Uncomfortable and noisy, but I don't care if it gets this wound healed! They found in the scan that there was still 3 cm of 'gunk' to clear, which is why the wound isn't healing. Keeping everything crossed.

I don’t know what to think. I’m hoping someone can see clearer for me.

he said he is very happy the cancer is half what it was. It’s nowhere else. He thinks the primary may have gone and was probably gynae. He said to carry on with chemo for another three months and then abit of radiotherapy, he said I should be happy.

He said we should be thinking about controlling and not curing.

what does this mean? If ya responding well then. Don’t understand. He also joked that f I wanted to take my nhs retirement earl he’s happy to support that. Oh god he was smiling but was t a hint?

I want to be happy and positive but I feel ten times worse!

@EachandEveryone I’m sorry that feels confusing. I don’t have anything helpful to add in terms of interpreting what it all means but I suspect that oncologists don’t hint, and you should just take what was said retirement at face value?

Each I think he's probably serious about supporting early retirement if that's what you would like, may mean he would write a supporting letter, maybe look up what that would look like in practice and think if you'ld prefer that. It's a lot to get your head round but it would be a pressure off maybe and time to do more fun things. I always hate the you should be happy comments though they are well meant but getting cancer updates isn't exactly something that makes you happy. Sounds like a lot of cancer is gone though which is good.

@EachandEveryone I think this is good news. Nobody can predict with any certainty what the future holds for any of us, but you seem to be having a good response to treatment and “should be happy “. Because the future is uncertain the oncologist is offering the early retirement option as you are eligible for it. That doesn’t mean he thinks you are going to die soon, he just doesn’t know!
I struggle with this. My team tell me I have had a good response to treatment yet I had two different and aggressive breast cancers. I don’t think anybody knows what is likely to happen next. We just have to soldier on hoping for the best.
Would you prefer to keep on working? Do you need to? Maybe find out how much the pension would be worth. I’ve had friends retire from the NHS but work elsewhere. I don’t want to go back to work now I have my NHS pension but I will probably do more voluntary work when I am fitter.

I dont know I think early retirement isnt given easily in the NHS and I think it would be quite a good amount. However I am only 55 and love my colleagues and even nursing and unless I could go back part time it wouldnt be financially worth it to go now. Especially as my sick pay lasts a year. He is a lovely man though very easy to get on with and he would do any favour I asked so I shouldnt read too much into his offer to sign me off. I mean the cancer is half what it was if it does that again in the next three months doesnt that mean its gone? What does control mean? Is it because they cant say cure anyway?

theres a small nodule on my right breast. Hes not concerned but should I ask my gp for a manogram even though I only had one two months ago?

@Whattodotomorrow I didn’t use gloves because of the faff with the cannula but I did use slippers after the first time as I wondered whether I had PN in two of my toes, plus I took ice packs to swap over half time, it was with the 3-hour paclitaxel, which is supposed to be bad for PN. It didn’t get any worse and the vague feeling in my toes from the first session went after I’d finished.

@EachandEveryone At least you have a bit more clarity I guess…. As to what you should do, it’s very personal I suppose around how important work is, whether it’s stressful, and how much your pension would give you to live on compared to what you need. I tend to think if I could afford it I’d retire and find more interesting and joyful things to do, but after years of self-employment and charity work my pension is naff all even though I’ve been contributing for years.