Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Sending good wishes to @Trumpton for pain relief and an uneventful recovery and return journey.
And to everyone else going through the crap of cancer in all this madness.
On the brink of long term self isolation. I have high risk underlying health conditions apart from cancer and DH is over 70. My life has been on hold for 9 months due to cancer and all plans for end of treatment celebrations are cancelled.
It's my mum's funeral tomorrow.
Younger son has moved out to reduce the risk of him infecting us.

Oh @Skap - I am so sorry about your mum, I had missed that she had died.
@Nonotmenori good luck with chemo, and @citybumpkin, how very hard for you to be asked to make the decision about treatment.
Coronavirus is certainly a huge spanner in the works for anyone going through cancer treatment. I went to Barts for bloods yesterday, it was so empty compared to normal times. And only one entrance open, so I had to walk round the whole building to get in!
@Trumpton glad you are through this surgery, hope you get some rest tonight and make a good recovery.
Good wishes to everyone! We can still hold on to each other on the thread, to ease our fears and help us feel less isolated.

@citybumpkin. I’ve been a lurker but wanted to post to say I’m in a similar position to you. Due to start chemo Friday and have been waiting for 2 days to get a call from the oncology team to discuss whether to go ahead due to Coronavirus as I’m panicking a bit.

My chemo was “optional” offered to me in addition to surgery (already done), radiation and Letrozole. My breast cancer was stage 1, hormone positive and HER negative. I had clear margins and nodes after surgery. The chemo would reduce my chance of recurrence by 5%. But Covid could also kill me (T2 diabetic as well). But I can self isolate pretty well (live rurally) and don’t have to go in to work. But my area has few cases so far. But, but, but. Which way to jump?

I’m in Australia so it’s 4.30pm and waiting for a call before the chemo centre closes. It’s been a anxious day. I’m hoping to make a decision today and the oncologist’s advice is the lynchpin.

@crabb Sorry you're going through this too . Chemo is the only option to treat the type of cancer I have. At some point this year I will need chemo. Do I have it now or later? We can isolate ourselves in the house with only me doing trips to the hospital. There is the risk of me catching it hospital though. I feel screwed whatever decision I make.

@citybumpkin I’m so sorry you are in such a tough place. I am lucky in that I have choices, although it’s a choice I’m not relishing at the moment. It’s almost 6.30pm and no phone call, I am pretty frustrated.

Citybumpkin and Crabb What a difficult situation to be in. Are you treatment centres offering advice or leaving it all up to you to decide. Do you have information about how much of the Virus there is near where you are?

I am thinking through this one for myself too although I am almost at the end of my Herceptin 2 more sessions to go and an appointment with the oncologist in the next 4 weeks.

I hope you both get some clarity and advice soon. Crabb. I hope you call comes through quickly.

@meercat23 The decision is up to me. My oncologist just said it was her duty of care to tell me. I'm stage 1 but triple negative. So its early but its nearing 2cm in size and its grade 3. I really do have a massive fear that its spread. PET scan this afternoon but that wont pick up any micrometasteses.

@meercat23 I'm in The Netherlands. Cases are on the increase here but the Dutch government has imposed a semi lockdown with schools, restaurants etc closed. The streets are near enough empty.

Oh Skap, I am so sorry to hear your mum has died and I am glad your surgery went well Trumpton. I keep meaning to come back with an update but am doing my best to pretend it was all a bad dream even though my body clearly doesn’t agree. I lurk from time to time and you are all in my thoughts and prayers. I love to see meercat and bloodybridget still posting. Crazy times for everyone xxxxx

Citybumpkin. I can understand why they don't want the responsibility of making their decision for you but they absolutely should be spelling out their view of the comparative risks. I think I might be tempted to ask, 'What would you do if you were me" It would help a ,lot if anyone had any idea how long it is going to take until things improve.

Snows lovely to see you posting. I hope you are doing well. Best wishes to you too

Hello @SnowsInWater! Lovely to hear from you. Sending you very best wishes.
@crabb really sorry you have the same difficult decision to make as Citybumpkin. That's a good suggestion of Meercat's to ask the HCPs what they would do.

Hello @SnowsInWater so nice to hear from you and thank you. I don't post much now, in fact I hid the thread as I have had so many other things going on but I pop in occasionally to see people's news.

Hi everyone, hope all is well. So sorry to hear about your mum @Skap.
I got my results today hormone positive, HER2 Negative, 65mm invasive, 39mm dcis grade 3 proliferation 10%.

@Hippiechick162 I don't really understand your results - hope they explained them to you. Is it better or worse than you expected? Whatever, hope you are OK.

Just been to see my surgeon - they're moving my operation back to the original date, so it will be Tuesday 24th March. They're not allowed to do the reduction on the other side yet, so I'll be lopsided for a bit, but I'm not that bothered, as I was worried they might cancel it! Was also told that I'll likely have a different radiotherapy regime - instead of 3 weeks every day, it will be 3 x dose over 1 week instead. Will be glad to get the operation done!

@meercat23 I asked her and she waivered. She is a bit on the fence and rightly so as she wouldn't want to be blamed should anything go wrong.

My PET scan was clear, apart from the boob tumour so I feel a little relieved. I had a massive fear that it had spread absolutely everywhere. I've opted for chemo first. I asked the oncologist various questions. Basically we have no idea what will happen with coronavirus. It could be weeks or months before it peaks here. The way I see it at some point this year I will need chemo. If I start now, then at least they will have some idea of the tumour's response. I do chemo after surgery and they have no idea. If I have a CPR to chemo then the prognosis is better.

We are isolating ourselves for the foreseeable future with only me going to hospital appointments. Still petrified of this whole thing.

Is there any room left in here?

I have cancer. Need a mastectomy, but I don’t know about chemotherapy and radiotherapy yet. I don’t know when I will have surgery yet either.

@LemonsNVod Welcome! Waiting is the hardest part...keep busy. Hope you have plenty of support.

Hi friends. Here in Oz (near Canberra) it’s 30 degrees and sunny, a beautiful autumn day. Canberra has just had its 4th Coronavirus case. They’re saying there’s no “community transmission” as all cases have come from outside the border or overseas, but they’re not doing a lot of testing, and Canberra is a land-locked territory! So who knows how accurate that is.
Anyway, I finally got a callback from the chemo team, and the gist of the message to me is that it’s my decision whether to proceed, and I have all the information now. Except I don’t. I got heaps of information in my last 2 appointments but it doesn’t take into account at all the latest CV activity. I’ve been talking to the radiation oncologist today to see whether I could do radiotherapy first then chemo - no, they won’t do that here. It’s chemo first or no chemo. I thought that could buy me some thinking time.

So my plan is to turn up for my chemo appointment tomorrow morning and talk to the medical oncologist again, then make a decision on the spot whether to proceed or not. Not happy! Never had such a hard decision to make with so little helpful information.

Also not helping that I’ve taken dexamethasone today as a pre-treatment and it’s given me awful indigestion and diarrhoea . We were planning on a splash-out dinner tonight for a final fling. I’ve got 3 hours to get better, wish me luck!

Has anyone currently undergoing chemo had any information from their hospital yet?

I've just finished 3rd cycle of 8, tablets only, no infusions, for post-op colon cancer, Stage 2. Should be going to hospital for bloods on Wed and oncologist clinic plus collection of new pills on Thurs.

This week, fatalities in my borough have jumped from 2 to 22. The chances are the overwhelming majority must have died in my hospital. It's the last place I should be visiting at the moment.

Theoretically, it would be possible to get bloods done off-site at one of the GP centres, phone consultation with consultant onc., who could send electronic prescription to local chemist who deliver.

In practice? Off-site centre v sympathetic, but say that they can't do it for me because hospital is on a different IT system. In effect, 'Computer says No'. No reply yet from consultant. Not surprised, they must be snowed under.

My chemo was 'optional', too. Only a small advantage on 5 yr stats, but onc seemed keen. Now I'm wondering if that small advantage has been wiped out by increased risk from Corona. Certainly, putting me in the centre of the local hot-spot seems downright daft.

Anyone in a similar position?

@Thymeout that is tough! My hospital are limiting as much as possible people go in so had a phone calls appointment and have a very long pre op meeting next week instead of a few different ones.
Can I ask how your surgery went? Did you need a stoma? I have mine coming up (no date yet) and am starting to freak out. How long did they keep you in for? How long before you were up and about etc?

Good news!!! I have clear margins with no node involvement. The actual cancer was much smaller than first thought, it was only 1.1mm big! So will probably only need 5 days of RT rather than 15. I am beyond relieved, I can't tell you. I feel utterly drained but so happy. Meeting the oncologist in two weeks to sort out Tamoxifen and RT. Then cosmetic surgery on other breast scheduled for 3 to 4 months.

@peaceanddove what good news!

Peaceanddove Brilliant news. So pleased for you