Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

@ChateauFille

In your situation I wouldn't personally tell anyone until confirmed by biopsy. Your poor DH is dealing with so much with his sister and Mum, and who knows, hopefully you don't have cancer. I hope you don't x

If you feel you'd like to confide in someone, is there a friend you trust to help support you for now?

Good to hear that even if it is cancer that you know it's early stage. Maybe the time to tell your DH is when the biopsy is confirmed, before the treatment plan so you can go together for that?

Good luck with your decision, it's not easy. I have only told a few select friends, although being bald for months did make it rather obvious! Mine is locally advanced, not as early as yours sounds and my prognosis wasn't good on diagnosis.

Yes, and carbo every 3 weeks with it. They did tell me yes, the cancer had shrunk from 5.2 cm to 3.8 but then wasnt responding, so thats when i had the surgery, all the margins etc were clear after wards too. They were defo taken by surprised, they even told, me, they were shocked to see it on my liver. This story really gives me hope, thanks for sharing it, Im glad shes living her best life, she absolutely deserves it.

@ChateauFille what a rotten thing to happen when your poor DH is so burdened already. Mine has been a tower of strength through 3 years of treatment but when his DM89 fell and broke her hip and his DF90 had to go into care he nearly broke. He is much happier now I am recovering and so are they. It is hard to feel we are an extra burden on those we love. It is hard enough coping with the treatment. I so understand you saying I am too busy for this too. It would never be a convenient time to have cancer but I am lucky I was about to retire at 60 when mine struck so it just made the decision easier. Good luck with the appointments. It is all very torturing waiting to find out what will happen next.
@Pinchaperfect that swallowing symptom is very important so you should tell your BCN about it. There may be something pressing on your oesophagus which needs relieving. They may want to do an endoscopy to check. Don't leave it to get worse. Sorry you are having a harrowing time.

All well here and quiet on the splinter front except DH is regaling all my friends with the story.
Top

@ChateauFille sorry you're facing this when there's so much else going on too. Other than DP, I told only a couple of close friends at biopsy stage. I didn't tell anyone else until I had a rough idea of the treatment plan - I was struggling enough with my own questions and what-ifs and I didn't want them to be in the same position without having any answers. I found it easier to say yes, I've got cancer and this is the plan.

Thank you top, yes i had realised i need to tell them and that it could be something of that nature, its just that i assumed seeing as i had a chest, abdo and pelvis ct scan, and it didnt throw up anything else apart from what i put the the long post, that it would have been picked up then if there was. fun journey this is eh.
Glad all quiet on the splinter front! x

Hello all, I’m hoping to join the thread!
Diagnosed with bilateral TNBC stage 2 maybe 3 in November 22 and now on round god knows of chemo! I’m a bit discombobulated as was in intensive care three weeks ago with blood clots. So I’m just getting my bearings again.
I have three more rounds that I do know (one tomorrow) and will then have a double masectomy. Has anyone had this? I’m finding after everything that has happened this is the bit I’m really worried about. :)

Hallo, I posted a little on last thread - but suspect I’ll have more questions on this one. I’m actually currently reading my way through the last thread - just to pick up any tips I can

I have primary peritoneal high grade serous cancer - which Dr Google is not very positive about. Yes, I know I shouldn’t have looked there, but to be fair I don’t think any of the sites are very positive about this

i have the oncologist next Monday (29/5) and may well be asking questions of you lovely people then. X

@RedRosesPinkLilies honestly with stage 4 fallopian cancer Dr Google had me written off long ago. I find the Ovacome site the most informative and the user forum is full of knowledge from women who have been there.It really has given me a lot more hope especially reading stories from women living with cancer x

@Lisdeflores I haven’t looked at that site - thanks for that.
I am (in my more calm moments) waiting to see what the oncologist says. I know they’re not fortune tellers - but I hope he or she will have the best idea of my prognosis.
This is such a helpful, wonderful thread.

@RedRosesPinkLilies Dr Google would also have written me off a long time ago with stage 3c ovarian cancer. I agree with @Lis, the Ovacome site is a good one and many ladies are long term survivors. I belong to two Facebook groups, one for my cancer and the other for the maintenance chemo I'm on and they are very much 'doom and gloom'. My theory on this is that people don't post when they're doing well, and so the vast majority of posts are when things are going badly and they need advice. I'm scrolling past these posts on FB now, they really aren't helpful.

@Fantasea Thank you. I am trying to be positive in a realistic way. But helps to know you’ve both made it a distance even though I am absolutely sure it’s been difficult at times.
Thank you x

@FairyWren7 I had a single mastectomy so I dont have experience of a double sorry, I was in for day surgery with it, did all my exercises and it was fine. No wonder youre feeling out of sorts after all that, hope you feel better soon.

I rang my oncology nurse this morning and got a prescription after telling her about my pain. It turns out it is more than likely nerve pain, even though i havent had any at all sine the mastectomy before now, its likely related to the satellite tumours I have. So im to keep on the co codamol at night, take paracetamol during the day when needed, shes given me liquid morphine to have in the day if i need it ( im not sure i will because otherwise ill end up sleeping the days away, i have four kids here, but i will keep and have if it gets really painful) And shes given me amitryptaline (sp?) to have at night, even though its an anti depressant, it's a nerve blocker, but she said it can make you really sleepy in the morning, does anyone else take this for pain? how do you get on with them? I may not take two co codamol with it, just one else i'll be a walking zombie.

Fantasea I am also in the FB support group (possibly the same one) for both OC U.K. and the smaller and more international low grade one, I’ve had to mute them as it panics me that everyone is so miserable.

Anyway, I am 37 and diagnosed last year with stage 3a low grade ovarian cancer. Supposedly very rare and I had absolutely no risk factors so just one of those things. Lymph node spread and VERY ER and PR receptive. I had major surgery followed by 6 rounds of chemotherapy and am now on Anastrozole long term. High chance of recurrence but desperately hoping I’ll be one of the few lucky ones.

Fairy I also had single mastectomy delayed reconstruction and that was fine, chemo I found awful but surgery no issues. Mine was prior to chemo. The only issues are delayed reconstruction is very delayed, had my op Dec 21 and still not even being put on waiting list and list is 42 weeks atm and go on it around August 23 despite them knowing I needed op in Dec 21. The mastectomy op without reconstruction wasn't that long and was a day patient, had general anaesthic and you need to get painkillers in as NHS gave none. Though second op they paid for me to go private on NHS and I got a whole bucket full. I would make them aware of blood clots as that's a risk factor, they should be aware already. Finding a vein after chemo can be an issue as well but there's ways round that. Mine took about a week to recover from with minimal pain, just do exercises. With reconstruction as well I've heard 12 week recovery as that's a longer op.

My immunotherapy will be on the 5th June it feels very real now

@AGreatUsername yes, it's 'Ovarian Cancer UK' and I've now muted that and the other one, why didn't I think of that before, thank you!

@Pinchaperfect I have taken 10mg of amitriptyline every night for over two years for nerve pain and it works really well. They used to make me very sleepy in the morning but I wonder if some of that was that I was taking them alongside IV chemo. Now they have no effect on my drowsiness in the mornings but the maintenance chemo affects my sleep badly. They are really effective for the pain though and the difference was instantaneous.

Hi there cancer crew. I’m newly-ish diagnosed with stage 3 BC, waiting on a treatment plan.

I’m not sure how consistently I’ll post but I wanted to nip in and thank you all because I was lurking on the previous thread quite a bit while I was waiting on tests. I was finding it agony waiting for the initial diagnosis (they had already told me it almost certainly was cancer) and then agony again waiting to find out if it had spread. Several people on the previous thread said how hard it is waiting for test results and that it’s one of the worst parts of the whole process, and I just wanted to say a huge THANK YOU for that because it really helped me to know that it was normal to find that so bloody difficult!! And that I would potentially feel better once I had more information! (And I do, even without a firm plan yet.)

I think I then read pretty much the whole thread because it was so helpful to read about people’s lives with cancer in them, while for a few weeks I felt like there was a neon CANCER sign over my head that only DH could see! You guys were like normality but with cancer in it which was exactly what I needed. If that makes any sense at all.

🌷🌷 spring tulips to everyone who posts on these valuable threads, and 🪻🪻 (hyacinths, I think?) to everyone who’s lurking 🙂

Welcome @AllotmentTime to the thread nobody wants to be on. I’m glad our wittering reassured you that life carries on through cancer treatment even if it is different. Tell me about your allotment! I spent an hour on mine today planting French beans and squash and discovered that a very kind neighbour has finished weeding my half cleared strawberry patch and weeded my blackcurrants too. It’s a disgrace but I think the neighbours are taking me in hand to sort me out! I’m delighted. I have been wearing my long gloves to avoid scratches because I am paranoid about infections on chemotherapy.
When I was first diagnosed I weeded like a crazy person during that wait for results.
Ask anything you like about BC treatment. I have had both triple positive and triple negative BC in the last 3 years so there isn’t much I haven’t experienced sadly.

Thanks @Pinchaperfect for your response. Day surgery sounds reasonable. I don’t like staying overnight in hospitals - who does? Mainly because I find it hard to sleep. I’m sorry you are dealing with pain, I know amtitriptine (sp) is often prescribed to help people sleep - hopefully it will help.

@Silkierabbit I’m not sure about recovery times. The Dr and plastic surgeon are suggesting a gap in between - the idea is I lose weight and try and get fitter. But to be honest at this point I just want it out of the way. I’m on blood thinners and I’m hoping that my chest scans etc will be ok enough for surgery. Pretty terrifying stuff actually - I think I’m lucky to be here - I’m only 46 and it’s a BRAC1 cancer TN. I’d also had a full hysterectomy at the end of 2021 after they found precancerous cells in my Fallopian tube. Then had to take the other ovary out. So I’m not having a good run at the moment. Are you happy with your reconstruction?

Thanks Fairy x

I've not had reconstruction yet Fairy had mastectomy in Dec 21 but not even been put on list yet for reconstruction but did get appointment today to put me on the list in June. I got mine at 48, complete shock, I been tested for lots of other cancers due to bleeding but never thought was any risk of breast.

Welcome Allotment

Hello all. I've kind of dipped in and out reading these threads but I'm rubbish at keeping up!

I'm 32 diagnosed 10 months ago with endometrial cancer. Tried hormone treatment for six months to try and reverse the cancer with no success so had a hysterectomy in March. Staging was stage 2 so I have been offered radiotherapy but have for the moment turned it down. Mainly due to the risks from premature menopause etc. I still have my ovaries at present.

Morning!
Dipping back in.I'm 40, endo cancer, working stage 1a. Today is radical hysterectomy day today. Getting a lift to the hospital two and a half hours away with a group of lovely ladies from the WI who are off shopping. Time to evict any remaining womb raiders!

@LarryStylinson hope op goes smoothly today and all the womb raiders are evicted successfully.

Thank you!
I've nicknamed the tumour that was removed already as Kevin the Gremlin. I like to think of Kevin and the Gremlins as some kind of punk band.

Kevin the Gremlin can F off!
Goodbye Kevin.