Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

I thought of treating myself to afternoon tea in Harvey Nick's this afternoon. Then thought I should do something more in keeping with my budget! I had a lovely chocolate fudge cake in Cafe Nero.
I toasted AIBU who have once again raised the 'sugar causes cancer' topic!

@Lisdeflores I saw that thread as well! Ah silly me if only I had known it was Macmillan coffee mornings causing my cancer I wouldn’t have gone to them!

On another note does anyone have any ideas or suggestions for how to stop the constant dread that the cancer will just come back? I haven’t even had any treatment yet (surgery on Thursday…) but I am already mentally planning for what I will have to go through when they haven’t got rid of it or it comes back. I know it’s really negative but I can’t get myself out of this hole… Maybe there isn’t a solution and that’s just how everyone is?

If sugar causes cancer then I am well and truly stuffed. 😂But I don't think it does, my grandmother and mother were also addicted to sugar and no cancer and plus I am sure oncology would have mentioned it. I think some people just want to believe they are immune to cancer.

I don't worry that much about cancer coming back now I have finished treatment. But for some people they do worry a lot. I worried a lot in treatment but when it was finished I just thought it's taken a year of my life its taking no more. I also accepted that I do not know how long I will live, I may life 1 year more, I may live 40 years more and I cannot have certainty around that. The only thing I can do is exercise 3 to 5 hours a week to halve risk of reoccurrence which I do and follow oncology advice. After that nothing I can do. Atm the follow up care us minimal so possibly could go private for better checks but basically those two are all you can do. I also had my son go into hospital 1 month after radio finished for 8 months and so worry about him replaced the cancer worry. I maybe worry about cancer an hour a week but it doesn't bother me much. I am at peace with dying early as well, I am going with my great aunt and eating lemon cake in heaven with tea in a thatched cottage with a rose garden. I have done pretty much all I wanted career wise, have a lovely family and have travelled a lot. I also have a wonderful cat who is always trilling who I got in chemo Mr Floof who keeps me cheerful, 1.1 metres of Fluff and growing. I also think anything you want to do, do it now like travel just go for it. I actually think due to the cancer I almost have a better quality of life now as I think about things more and swim more. Plus I have a whole new knowledge about cancer and autism.

I love that boat top. My great aunt used to have her cottage full of bunches of dried flowers and I love them as a child. I had a scone, clotted cream and jam and wish us all luck. @Mowly77 hope you are safely in the US now.

Ooh my feet hurt! Just been out for a Turkish meal and even though my late aunt’s parking angel found us a space outside the door I still suffered. This is a severe annoyance. I had a little cry when I was rowing out to my boat this morning grieving for all the things I can’t do at the moment due to exhaustion, sore feet and knackered immune system. The folks I met were very kind helping me with heavy things and opening gates for me. I was quite conflicted about it all. I just want treatment to be over and done with.

@Brunonononooo I think the trick is firstly to live in the moment and secondly not look ahead worrying about what will happen. You can’t alter what is ahead. Either you enjoy life and get away with no further cancer, or you enjoy life until you can’t any more. Worrying just spoils the time you could have being healthy and happy. But that’s easy for me to say as an optimist denier of reality!

I agree with @TopOfTheCliff - as much as possible you have to live in the moment. Even though we know we have cancer, that really just makes us aware of our mortality (I mean in an emotional sense. It also brings a lot of crap treatment and side effects).

Quite a few parents at my kids school died in the years the kids attended - and with two of the mums (not old 40s/50s) it was very sudden cardiac deaths. They didn’t have any warning and no time to ‘make memories’ (that phrase depresses me).

I know it’s crap, and I was worrying about recurrence the other day - when I’m actually still dealing with the first presentation.

I’ve also realised - because I still look healthy - there are definitely people walking around who have this disease and don’t realise yet. At least we are fighting it now.

But the only way not to really suffer emotionally is to enjoy the present and focus on what we can do. (I think),

That was @Brunonononooo

@TopOfTheCliff Swifties have been making friendship bracelets to trade at her shows, in reference to a line from "You're on your own kid" - that verse in particular is about doing the things & living in the moment. Very apt after reading @Brunonononooo 's post.

I'm very much trying to live in the moment & do all the things!

The things will probably be slow today though. I went for lunch with dd1 after chemo & had settled down to paint when we got in, then have an earlyish night. My colleagues invited me to the pub so I went there instead 🙈 I rolled in at 11pm! Haven't laughed so much in absolutely forever though so it was worth it.

Probably shouldn't have had the third wine, thinking about it this morning, but it's done now & my consultant did say it was ok to drink in moderation when I asked the first time I saw her. So maybe 3 glasses is not too bad?

@lucysmam it was a one off and sounds like your evening was well worth it in terms of laughter (best medicine) and socialising and stress relief. I'd chalk that one up as a massive win if I were you, with no worries about the third glass 😁

@MyNamesGaryAndImAddictedToChips what about a towel under you at the beginning of the night? Then when the sweat is "over" you can hopefully find a bit of towel to dry yourself with, then chuck it on the floor and the bed will be dry (drier at least) for sleeping on? Probably depends how mobile you are in hospital.

I found out this week that chemo is definitely on the cards, my Prosigna test came back high rate of recurrence score. Everyone is expecting me to be so devastated that I have to have chemo but honestly I've spent longer assuming I would then hoping I wouldn't? I mean it's the cancer treatment everyone knows about so it's always been a possibility. OMG did not expect the barrage of side appointments though. Get coil taken out, see dentist, ECG, bloods, pre-op assessment for portacath, actually have the portacath, something else I'm sure I've forgotten.....

On the subject of the dentist, I had an appointment (checkup) scheduled for mid-chemo and my doctor advised me to move that to pre-chemo. Only appointment I could get was the day before though. I'm hoping that will do?? Recommendations online were to see the dentist a month previously. That would involve time travel 🤣

@AllotmentTime I'm definitely chalking it up as a win, I had a blast!

I haven't even managed to find a dentist yet so you're doing better than me! I only knew we'd been taken off the previous dentists system when I went to book appointments for the three of us after covid & the receptionist couldn't find me first, then the kids who she said should have popped up linked to me. I'd had nothing telling me about this & we'd not missed appointments or anything.

I actually discussed it with my bcn who said loads of people had had the same happen after covid & it seemed to be because they want to do more private work 🤷‍♀️ She's going to refer me to the community dentist but my friend, who is a dental nurse, said they won't touch me for three months after chemo anyway. I have a tooth that needs to come out too 🙄 thankfully it's not painful.

@lucysmam awful isn't it. We moved house a couple of years pre-covid and I spent a while travelling back to our old dentist and then ended up going private. DH has been unlucky with some work needed but so far I've been okay (not that the checkups are cheap, but better than treatment!!). Hoping it doesn't get too pricey now with the cancer stuff 😩😩

Happy weekend everyone. Haven’t posted much as surgery not scheduled yet for the BC. Nurse touched base last Wednesday and is hoping for me to be done early August. Have had gym assessment yesterday at Active for Cancer so starting pre surgery fitness classes next week which is good and week after am on week’s leave from work. Not doing anything but am very much looking forward to not being there! Having felt perfectly healthy until routine mammogram threw up the BC I now have aches, pains, breathlessness and feeling crap which Im sure is all totally psychosomatic but will be glad to get the surgery out of the way so I know what’s what.

How long have people had to wait between diagnosis and surgery for breast cancer that has moved to the lymph nodes? My surgery isn't until 10th August which will make it 2 months. I'm sitting in my car in Sainsbury's car park wondering why I'm trying to carry on as normal when this "thing" is growing inside me. I swear I can feel it moving round my body and It's definitely getting bigger in my armpit as it's started hurting now.

Hi @1Strawberrycat i believe the nhs guidelines are surgery within 62 days of diagnosis so you are bang on. I was diagnosed 20th April suspected NO lymph node involvement, had my surgery 28th June which confirmed lymph nodes clear but I was convinced in those in between months that the cancer was going to spread into my lymph nodes - I did ask surgeon about it and she said it wouldn’t grow/spread that quick - even though I was grade 3.

As I understand Breast cancer in the lymph nodes means it either already has, or will metastasise. (Excuse spelling). Apparently if it has spread to your lymph nodes - like mine has, that doesn't count as Metastatic. Anyone know why? Is it because hopefully it's contained in the lymph nodes? Mine feel so big and hard -fit to burst. As lymph fluid travels around your body I'm not feeling positive.

@1Strawberrycat I'm so sorry that I can't answer that at all but I do know that when I've been dealing with this shite wtf does all this mean anxiety/ just want clarity, how do I navigate life right now, calling macmillian has been extremely helpful.

They set up an account for you so that trained nurses can keep track of what your diagnosis is and what's been suggested/ sent out to you.

Sending love xxx

@1Strawberrycat my first tumour was 22mm and had spread to a lymph node which was 25mm and had been holding on to all the badness. I had thirty more nodes removed and a CT scan and all normal no sign of anything else. That little node had done its job beautifully. I am a bit surprised you are having surgery first rather than chemotherapy but I guess everybody gets a different plan. It will be good to know it is all out and find our what happens next. Are they doing a total node clearance? Spread to axillary nodes is considered local spread and not regional (which is secondary cancer) like above the collarbone or into your lungs or bones or liver. The prognosis is still very good with axillary nodes especially with all the new drugs available now.

I’m still waiting for a treatment plan as I am changing consultants so as to be closer to home, but my first consultant said that whether to do chemo before or after surgery was very much swings and roundabouts and different teams had their own preferences. So I’m trying not to second guess but it’s frustrating not knowing.
My diagnosis was 3 July so at least it looks as though I’m safe for my summer holiday - getting back August 14th.

Strawberry I had two lobular breast cancers with spread to lymph node and I was surgery first too. Its counted as locally advanced when in lymph nodes and only becomes metastatic if its gone further which is rare, about 5% I think. Obviously waiting for surgery is not ideal and I was given a 3 month timescale and I put a complaint into PALS and cc'd Chief Exec correctly guessing his e-mail. And that was at the weekend. Around 8am on Monday morning I get a call from Chief of Staff at hospital saying very sorry and they will see what PALS can do. Later that day I get a call saying how about coming in tomorrow for pre op and Fri for surgery. So I took it. I am sure the Chief Exec intervened as PALS are swamped. When I needed a second op for full node clearance the NHS paid for it to be done privately when the NHS had to cancel on same day. You could try either a complaint explaining how worried you are and that you know staff are trying their best but you need to be around for your kids etc type one, I explained I had a vulnerable DS who was mute and a DD doing GCSEs. Or ask breast care nurses if any cancellations, though when I tried them they didn't help but sometimes its asking people until one helps. Though 10th August isn't too long. I was told it was surgery first as I was HER negative, they said had it been HER positive it was chemo first. My lymph nodes were also not picked up on scans only found in surgery.

I preferred surgery first as after it, well the second surgery they said all the cancer was out as far as they could tell. I did need chemo after and it was a bit hard to see why if cancer was out but it helps some people.

Lucy It might be worth calling your dentist to check if they can't do anything now about a tooth that needs removing. I had to switch to private but my dentist said to see him in chemo if issues, gave me extra fluoride toothpaste. Ideal time is before chemo but think if its an emergency they can do things. Though always mention chemo etc.

I had this for my endometrial / ovarian cancer, I found it a really difficult decision to make, it was in case there was any small bits remaining not picked up on scan - especially as I was incompletely staged for both, but there's the chance I damaged my body further when there was no cancer left 🤷‍♀️.

It's a week and a half since my biopsy to see if I have a recurrence or it's just granulation of my scar. I was relieved not to get a phone call this week, but then I was driving back from a few days away and it suddenly occurred to me that there might be a letter with an appointment waiting for me as they seem to come out really quickly so I was feeling anxious all the way home. Nothing though, but the roller coaster continues.... I don't know whether things are being delayed by the strikes. The waiting is awful.

@Silkierabbit I first discovered a weird lump under my arm. ( the lymph nodes) It felt like the size of a gobstopper. I still can't feel the 30mm one in my breast but I don't dig about looking. Under my arm is painful now and very lumpy. I'm finding it hard to drive and change gear. Using the handbrake is difficult especially on a hill. The last 2 days I've said to myself I won't use the car any more but today I've gone food shopping but I've been in Sainsbury's car park for 2 hours as I suddenly became exhausted and had to lie down. I live alone with my dog and cat, my autistic son lives in town. I'm also Her2 negative and can't wait to get this cut out. Not bothered if I have to lose my breast etc: just want it out of me. Do you know how long yours had been there before you discovered it? Mine is "at least months" apparently.

Not the same cancer @1Strawberrycat but I was told mine had probably been developing for two years before diagnosis. I wondered whether HRT had "caused" it but I'd been on that for a year or so, so it had possibly worsened it but not started it according to the consultant.

I don't actually know how long mine was there - I discovered like a 5cm cubed lump which appeared overnight in May 2021 and told GP in June 21 who initially said almost certainty nothing then went back (well all over phone then) in October 21 immediately referred by that GP who said 99% certain cancer. A week later they did mammo, ultrasound, and biopsy and confirmed lobular cancer and recommended an operation and suggested a lumpectomy or mastectomy. I queried how a lumpectomy could be enough as I'm not that big and the surgeon checked again and found a second cancer he said right by lymph node. Then surgery found it in lymph node.

I was 48 and never tested for breast cancer before. Lobular grows as a spiders web so it could have been growing for years as it just forms the lump at end and often isn't picked up until stage 3. Ironically during that time I had symptoms of several other cancers and tested but all negative - I had loads of bleeding and blood clots. I hope you are feeling better now. Can you get someone to help with shopping etc or maybe get it delivered? It can be worth putting in a claim for ESA now if you aren't working, Macmillan can help advise on that, I didn't put one in until chemo but should have done it earlier.

@1Strawberrycat have you had it biopsied? If so that could be causing swelling.

Fwiw I have breast cancer spread to lymph nodes, I was just under 6 weeks from diagnosis to lumpectomy & full axillary clearance surgery, but that was private. My lumpectomy site still feels hard now nearly 5 weeks later, like when I was breastfeeding and a feed was overdue, don't underestimate swelling if they've been poking around at you.

The plan for me was always surgery first, then chemo. My understanding was that chemo first is if it's needed to shrink the tumour to be better to operate on. Otherwise the priority is to get the main bit out first (ie the potential source of it spreading elsewhere) followed by chemo to zap any bits which might have already tried to escape. (Disclaimer: not a doctor)

HTH