Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

Well I have just caught up properly with almost the entire thread. Too much to respond individually to everyone, but I can see there are a lot of us who have recently started chemo or are about to start - sending good wishes for as smooth a passage through it as possible, to @Lubballoo, @AlbertCampion, @backformore, @gillmoregirl, @HumphreysCorner, @FizzyOrange and @HauntedDishcloth.
And congrats to those who have recently finished or are about to - @Starmer, @KentishMama, @ElaineMarieBenes and @lucywarlowsrighthand.
Much sympathy to those having a bad time with treatments - @Acinonyx2, nausea is, I think, my least favourite side effect. I don't find domperidone hugely effective (although I suppose it would be worse without). I was prescribed 5 days worth of steroids rather than 2, after my second treatment, and although I was still nauseous for several days I didn't actually vomit. @Icantfindanewname sorry about your painful rads burn, I hope the ointment is helping, and @backformore what bad luck to get acne!
@TopOfTheCliff you have had far more than your fair share of issues - how's the big lump now?
@Noidea2114 hope you make a good recovery from the lumpectomy and that the soreness abates soon.
@BitOfFun how's your poor mouth feeling now? Did the dental/jaw work help by removing some of the very rough areas? Can you eat??
To other newbies not already mentioned - hello, welcome and good wishes to @thereisonlyoneofme - I have OC too but had surgery. Hope you don't have to wait too long for your appointment. @loubieloo4 so sorry you are having to cope with a breast lump as well as your DH's cancer. Crossing fingers you will be fine yourself.
@Anne1958 you definitely don't need to be grateful for early detection and treatment of OC, it's still scary. How are you doing post surgery?
@PeachScone hope you get an appointment very soon. Waiting is horrible.
@Wellwhatalovelyday here's hoping you get biopsy results very soon and that it's good news.
@HUGS65 sorry you are feeling so anxious - no point saying try not to catastrophise so I just hope you get more information soon.
@Mythreeknights just wishing you good luck with your treatment, quite understand having a red sore face will be hard to cope with.
@LoveFall also to you, I hope of course that it's not cancer.
@Ismellphantoms that's rubbish you've had to wait so long for the follow up appointment. Postcode lottery issue? And wishing all the best to your DH for successful treatment, hope he is doing OK post surgery.
@crazycatladyx do you know when you will have the second surgery?
@Tean791 do stick around and share your situation - there are so many experienced and helpful women here, it's very likely someone else has been in a similar situation to you.
Also waving and sending warm wishes to @Shrillharridan, finally your appointment! Hope it goes as well as possible. What an awful long wait you have had. @Zorgothslugofdoom I guess with the Covid situation you may have to wait a long time to get two matching breasts
@Skap glad to hear you are well!
@InOtterNews growing hair, wow!
@seizethecuttlefish have you got a date for surgery yet?
@Lizdeflores I'm sure you will get scan results much sooner than 12 weeks. Hope all clear of course.
Waving to @MollyButton - hope you are making a good recovery from surgery and that your DD is managing with the cooker! And to @MrsPnut and @Lurkeycakewoman, and anyone else I haven't mentioned.

Thanks again to all who responded to my question about counselling. I've decided on someone I think I can work with and will start next week. Nearly two weeks till next chemo, which seems ages but am also dreading it . . still have bad taste in my mouth, and am low energy and very breathless going upstairs, but apart from that am pretty good.

Hi guys hope you can give me sime advice. I finished radiotherapy for my grade 3 breast cancer in july last year. I also had a lumpectomy. Wasnt suitable fir chemo due to type of cancer. I was supposed to start Tamoxifen but didnt as i had serious MH issues and was really worried about the mood swings. J spoke to my Oncologist a week after i finished radiotherapy and she said i was done and they were discharging me( she said to not take the Tamoxifen). Ive not heard anything from anyone since then. I was in hospital over Christmas for something unrelated to the cancer and the nurse asked if i was being closely monitored since the end of my treatment? Now im worried i have heard a thing since the start of July, ive never even had my wound looked at. Should i contact someone about this, or is it normal? Thanks so much !!

Hello, my tests are following from anaemia which was found from the blood taken before operation for breast cancer. Colonescopy this afternoon! X

Hi Bridget I'm glad to hear that things are getting better for you and I hope they continue to improve. I have a telephone consultation scheduled for the end of the month so hopefully I will get my scan results then.

@Redannie118 that doesn't sound right at all - I remember you from last year, am very surprised they did not set up monitoring. But other women who have/had breast cancer will be more knowledgeable.
@Tean791 so you already had surgery for breast cancer, and now need investigation for cause of anaemia? Hope colonoscopy goes OK and hoping for the best for you - do please update.

@Bloodybridget Good to hear from you and glad you're feeling bit better. Good luck with your counsellor. I hope you click. You're fantastic how you keep up with everyone. Think you should rename yourself to Bloody Amazing Bridget. I can hardly remember my own names these days. 😂

First cycle down with limited side effects peeling hands and fatigue. Scalp bit sore and red but nothing major. Enjoying week off chemo now. 7 more cycles to go.

Hello to everyone else on here and I hope 2021 treats everyone kinder than its predecessor. Best wishes to all. Xxx

PS: I used to wonder how bad hot flushes could actually be...... 🔥🔥🔥😩

aw shucks @gillmoregirl! Keeping up with the thread is my substitute for all sorts of useful and educational activities that other people might be doing!
@Lizdeflores that still seems quite a long time to wait for the scan results . .

Hi
I have a pounding headache but wanted to update you all.
So. Turns out I have a choroidal nevus. Dr thinks its OK atm but I will need regular scans to monitor it to make sure it does not become malignant.
I also might need injections in my eye as there is "stuff" there that shouldn't be
"Crud" was the word he used 😁 he's getting a 2nd opinion.
Anyway, good news I think albeit regular scans needed going forward.
I'm so tired.
Thank you all so much for your support, advice and general awesomeness.
You are all incredible human beings.
Can I still hang out occasionally??
Love to all x
Thinking of top and hippiechick today x

Clinic was rammed btw...so busy.
And so cold!
Feel sorry for the staff in that all day

Hey @Shrillharridan please do continue to hang out - how are you feeling about the diagnosis? It could be a lot worse I guess. Second opinion sounds like a good idea too. Hope the monitoring is indeed regular, and that injections and any other treatments are tolerable!

Thank you bridget x
I feel a bit weird. A bit like a potential time bomb in my eye which is silly.
I can't say I'm looking forward to the anti vegf injections but they won't happen if other dr says no.
There is potentially another dx too but he seemed unsure so we'll see.
I'm still baffled as to why I wasn't referred last year in june but 🤷‍♀️
I do feel happier I'm now under one of the four centres of excellence in the UK!

Ah @Shrillharridan I'm so pleased for you it's a benign condition that's a huge relief. Do stay and chat when you can.

I have my results and I AM CANCER FREE
The chemo caused a complete pathological response and there was no trace of cancer cells in any of the tissue they removed. Only ONE out of twenty nine lymph nodes removed had been affected.
They are going to give me a breather to recover from the operation and the broken ankle before radiotherapy as I am a bit broken. I am still feeling sick and in pain from the infected seroma but I am so happy!
I cried when the doctor told me. I think she might have too!
It makes all the horrors of enduring chemotherapy worthwhile.
I am posting this not to gloat but to give hope to those with HER2 BC that the treatment works!!

@Bloodybridget you are a legend! Respect to you

@Topofthecliff that is fantastic news, I'm absolutely delighted for you! Now I just hope the infection clears up fast.

So I finally got a call from the ob/gyn today. I am not sure if I should celebrate or cry.

The pathology says a Borderline Brenner Tumour. This is an extremely rare ovarian tumour. It looked like it was all removed. There was no cancer in my abdominal fluid washings.

The gynecology people are referring me to our cancer agency to see if the oncologists think I should have my uterus out and lymph nodes checked. The gynecologist said she didn't think it is likely necessary but they feel I should explore it further.

Although rare the little I could find seems to suggest a 20% or so recurrence rate but I am not sure about the other factors mentioned online.

Thanks so much for listening. I guess I am official in this group now.

I hope you all had a decent day. I have been watching the chaos in the US in horror. I am so grateful to be a Canadian.

Oh top!!!
Am having a little sniff for you...so happy for you 💜

@LoveFall that sounds like difficult news to hear even though a lot of it also sounds positive. I think you have to try to let yourself feel all the things xx

@TopOfTheCliff what brilliant news! Wonderful.

Needed some good news. Awful scenes from the US and inspite of my best efforts i am worried about whether my surgery will take place on time. I saw urgent cancer ops had to be cancelled at Kings this week. I can't bear the idea of finishing chemo and having a long wait knowing the cancer is there and growing. Fingers crossed it won't come to that. Chemo today anyway, one step at a time!

@ TopOfThecliff that is wonderful news congratulations.
@Shrillharridan I'm glad to read that you are finally getting some action it must be reassuring to be under specialist care.
@LoveFall celebrating and crying are all valid ,but there seems to be lots of positives to hold on to.
I start Bevacizumab on Saturday I'm worried about potential side effects of this and also worried that treatment might be delayed by C-19

So nice to see some good news. I'm avoiding the news as what going on in the US is horrific so it lovely to see some positives here.

Yay @TopOfTheCliff and good news for @Shrillharridan too. Hope if you need the injections they aren't too bad.

@gillmoregirl omg hot flushes. One of the charming side effects of my cancer are horrific night sweats and hot flushes. Good that your first cycle was ok.

@Redannie118 id speak to your support nurse or the consultants secretary. I'm no expert but I'd imagine they'd still be keeping an eye on you.

@crazycatladyx I shall now imagine you as Audrey Hepburn in Breakfast at Tiffany's. Hope everything is going ok?

Hope everyone else is doing ok and getting through January as best we can. My op is on Monday. Full lockdown so no visitors. I'm madly overpacking! The joy of homeschooling and trying to get some income in are keeping me occupied.

@TopOfTheCliff brilliant news! I am so happy for you, you must feel so relieved. So nice for us all to hear this.

@Lubballoo I too am worried about my surgery being cancelled. I have to have 3 chemo then surgery then a further 3 chemo and this should make my surgery date around the beginning of March. Do you know when yours should be yet?

@Bloodybridget you are amazing in your ability to reply to everyone individually, what a lovely lady you are.

Well, my snotty e-mail to the CNS on Monday worked wonders and I had my pre-assessment and Covid test on Tuesday and my first chemo yesterday! Had I not e-mailed, another weary week sitting by the phone would be ticking away. My chemo was 3 months to the day from my initial referral to gynaecology which is a disgrace really. Anyway, all went well yesterday and the staff were so kind and understanding. This was at a different hospital to the regular one I attend and the caring and sensitive attitude of all the staff really highlighted some of the unfortunate attitude and rudeness I have experienced so far. No side effects from the chemo so far apart from no sleep until 5.30am and then I had to wake up at 8am to take my mountain of pills lol.

@TopOfTheCliff Fantastic I am so so happy for you. Xxxx

@seizethecuttlefish. Did anything help those hot flushes? Apart from getting a large fridge and climbing into it. 😂😂

@FizzyOrange my surgery should be mid-Feb. I should finish chemo on 21st Jan and it ideally would be 3 weeks after that. Keeping everything crossed for us! Hopefully with the lockdown and the vaccine things will have improved. So glad your chemo has started. Hope you continue to feel ok. After several months I think I might finally have got used to the steroids, my sleep is still a bit disturbed but I think it's stress now!

Oh yes the hot flushes. Fortunately I think I have them relatively mildly for now as I just get hot, not sweaty, but they're enough to wake me up . I've started adding flax seeds to my porridge as I read somewhere that might help but I think it's similar to soya where there are different schools of thought as to whether it's good to eat this stuff with hormone positive breast cancer. I figure it's not going to make a difference either way, cancerwise, while I'm on chemo!

Hi.
I am recovering amazingly well - any pain treated purely with paracetamol and I'm on my second day with none. I should be having a conversation with the Surgeon next week, finger crossed the Lymph Nodes were all fine.
I am still tired, but am also getting things done, so better than it was. I went for a bit of a walk with my DD.
I've also had a new patient appointment with my new GPs, and it was very thorough. I even got a Tetanus booster after years of my old surgery insisting that I never needed another one. We also talked about all kinds of things that have been odd inthe past - eg. do I need B12 injections or not?
Now if they can also take my DD seriously - that could be another really good aspect of having moved.

@topofthecliff that's is great news.
@bloodybridget how nice that you can remember each of us that's posted. I can only just remember my name.

I'm having a small blip today, worrying about the results of my operation tomorrow and my further treatment.
I'm hoping that they allow DH to come in with me. I've asked my nurse and she said I'm to ask on the day.

@Noidea2114 good luck tomorrow, I hope they will let your DH in.