Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

@TopOfTheCliff I love that article. I keep reading it and laughing and crying, it really hits home! Thank you for sharing, I have sent it to my family and had very positive responses from them about it, it had all the words I have never been able to find about how I feel.I hope your treatment is not too brutal this time, neither the lion nor the bear.

<pops head round door> Thank you @dotty2

Welcome @Gilead and how is everyone today? I am anxious for my results appointment later in the week and have been doing lots of ill-advised googling. More positively, I had a nice walk in the autumn sun this lunchtime, had a card and hand made present from an old friend, and have managed an hour or two of somewhat productive work. Sending positive thoughts to whoever needs them right now.

Hello @Gilead 😊

I ended up being admitted to hospital at 7am Saturday with a fever. My netrophils were 0 so I was started on a very strong antibiotic course and kept in until this morning when I basically forced them to release me because I had to be home today to return to work! Neutrophils were still 0 yesterday and I didn’t stick around for todays results so I’m trying to stay a bit sheltered now this week.

I’ve developed some lovely ulcers on my tongue and one cheek and have some gum pain and I’m really not sure if it’s caused by the Abraxane or eating salt and vinegar Hula Hoops 😂

I saw respiratory consultant this morning. My nodule has gone from 4mm to 11. Positives are that lung function tests are good and no symptoms. It’s too small and difficult to biopsy, so PET Scan on Friday. Won’t get results for two weeks.

I’m sorry to hear you’ve been poorly. My sister in law used to be in and out of hospital with those symptoms when she was being treated for Breast Cancer. It wasn’t pleasant at all and I’m sending you a gentle squeeze. Xxx

Hi
It's great to find some support on here...
An incidental liver tumour was seen on scan about 6 months ago.
I was seen at hospital as an urgent. To be seen within 2 weeks.
I had a scan with micro oxygen bubbles injected intravenously to give a clearer view of the liver.
I had 2 of these scans by a the head radiographer, with 3 month intervals.
I was told that it was a knot of blood vessels, something I was probably born with and that the size just over 1cm hadn't changed since the 1st scan done by himself.
He said he would have a discussion with my hepatologist and the tumour may need to be watched further over time.
A few times (there was another Dr present during these scans),
I heard him say, there's wash out in that area and asked do you see that?
I asked what that meant he said it was complicated, a medical term. A bit condescending, I thought...
I waited a few months, hearing nothing about my case. Thinking it was all over, I just got on.
When I received an email that my hepatologist was going to call me, I thought Yaay I'm going to be discharged and shared this news with my family.
Only to be surprised when he called saying that I need an MRI as an urgent and may need a biopsy.
There is be a multidiciplinary meeting planned with a many people, doctors and and other professionals, to discuss my case.
Then he will call me with the outcome of what they decide to do.
You can only imagine how distressed I was.
Since hearing the term, washout, I have learned what it is and that it nearly always means there's cancer cells in the area of washout, where the dye doesn't dispurse.
I am impatiently waiting for my call back.
I have spoken with his secretary and informed her that if the news isn't great, I would like a face to face.
So far all communication has been over the phone.
That aside, he has been exceptional doing every test possible.
The MRI was delayed the first time round as I am highly claustrophobic.
I managed well with sedation and a mask.
Being unable to see was what helped me overcome my fear the most.
Sorry for the long post.
I needed to get it out.
Has anyone else encountered the term Wash out and if so, do you mind sharing what it meant for you.

Thank you in advance.

Thank you @MrsTumblebee

@Kins2 I don’t have any experience with your question, but I just wanted to offer a quick hand hold. Waiting for diagnosis and the absolute fear of it really is awful and all consuming. You’re among people who understand here even if we don’t all understand your exact condition. I hope he calls you back with good news.

Thank you for your kind words and support.
It is a very scary and worrying time.
I am praying for a good outcome as I am for anyone else out there, who are also waiting for results.
🙏

Welcome @Gilead and @Kins2 to the thread nobody wants to join. The waiting is the worst bit.

I had my phone review today and the tumour biopsy was negative for the BRCA gene. Hooray! I celebrated by going to my whacky yoga class. We discussed evil spirits and my theory I picked one up in the Himalayas. Apparently I could go to a shaman in Plymouth to have it removed with the help of magic mushrooms. I love this stuff. I may go out of scientific curiosity.

positive vibes and benign spirits for you all
Top x

Hi, i love your interesting response.
Congratulations on your negative result.
Always what we want to hear.
Yoga was a great way to celebrate.
I'm already thinking ahead. Hopefully good news.
It will be a meal out with hubby!

All the best.

And thank you

Thank you @Kins2 for those kind words. I was very worried about the MRI scan I had for my head. I thought the machine would be dark and shut in. In fact it was bright white and airy and had mirrors so I could see the radiographer and the room outside. They gave me a choice of crap pop music or crap classical music or neither. I chose Classical and it was indeed crap and I fell asleep! The whole thing was way better than I expected.
Gearing up for third dose of EC today. It will all be fine. It will all be fine. It will all be fine.

Best wishes to all
Top x

Hi,
Yes I was pleasantly surprised how cool and airy it was inside.
I was a bit worried that I may get hot!
As I couldn't have completed the scan.
I'm glad it worked out better for you also than expected...
This Ayanna sound strange but I came through the whole experience elated that I had conquered my fear in that situation.
I love your mantra, it will all be fine. 🙏

All the best with the EC today.
Pls let me know how you get on.
All the best x

Hi,
It's amazing that you can come on here to share and destress a little.
You are helping just by sharing your experience.
It is a lot and frightening for many going through these experiences of a cancer diagnosis, regardless of the stages or awaiting diagnosis.
It's never news any of us want to hear.
Your life sounds very full, so to have this diagnosis on top must have been hard.
Its good you have support at home with your very sick child.
Take care and keep going x

Hi,
I feel I may have responded to the wrong persons thread.
Re take care and keep going.
Apologies

Had my results appointment today. Bit of a mixed picture. Clear margins and 4 positive nodes (was worried it would be more) but a bigger tumour than appeared on the scans. Predict gives me a 62% 10 year survival score, and only 49% at 15 years, which is a bit depressing. But there are new treatment options it doesn't take account of, so on the whole I am feeling more positive than not.

Glad to hear that you are feeling positive. I'm still very new to this, only found out 9 days ago that it was cancer, I've been told one lump is grade 2 and the other one is grade 3. Waiting for Bupa cover to be authorised and then it will be a pet-ct scan followed by surgery and chemo.

@dotty2 The predict score takes no account of radiotherapy or any immunotherapy so should be used with a pinch of salt. In my mind, it doesn’t matter what the population score for recurrence is. I have a 50/50 chance of my cancers returning, it either will or it won’t.

@fudgecat Welcome to the thread none of us wanted to join. I used my BUPA membership for much of my treatment but have moved between NHS and private all the way through. I love being able to contact my consultants when I am worried about symptoms.

I am going to have an old bit of tooth root removed tomorrow, I should have had it done in Feb but with the hole opening in my chest and the plastic surgeon wait it was delayed. I do need to start Zolendronic acid infusions though so it needs doing. I’ve got a MaxFac surgeon doing it (That’s BUPA for you) and I have booked a PET scan for next week as a body check.

My oncologist was amazed at the improvement in my extravasation scar, my magic lymphoedema lady has been working on freeing the scar tissue from my chest wall and it is looking better every week.

Good luck with the tooth @MrsPnut and great news about the improving skin. I’m still sorry we didn’t meet when I sailed past you in May. Seems a lifetime ago now!

@dotty2 do you have a treatment plan now? Has the tumour size changed anything? It’s like snakes and ladders getting good news and less good news as you try to move towards the goal of NED (No Evidence of Disease) sending hugs

Welcome @fudgecat do you know what your tumour type is? The rule here is Don’t Google! Stick to Macmillan or NHS sites and ask us old lags 😁the wilds of the internet will terrify you and convince you you are doomed. It gets easier once you know more and have a plan.

@Kins2 it was all fine today! First I was trying on my ridiculous Amazon 60s party wig (which is hideous) then I tried my old wig and realised I quite like it so wore it to the hospital. I decided to see if the last nurse was right as she mocked me for using anaesthetic cream and said nobody needs it for the port. She was wrong as without it the needle hurt and freaked me out. I was convinced I was going to do a @MrsPnut and get a leak. The nurse was great and all went smoothly, four drugs piped in and home after about 90 minutes.
The hospital was under siege with at least 26 ambulances parked up outside and hospital security directing traffic and staff taking sandwiches round the ambulances. Apparently they have a backlog from last night and there are people who have been waiting there since yesterday. They are on black alert. It is appalling and the winter hasn’t even started.
Anyway I am home scoffing rice pudding with butter which is my comfort food.
Three doses of EC done now, scans on Friday to decide if I need a fourth, then Paclitaxel. I’m nearly half way already!
sending cheery waves
Top x

Hi
I'm so pleased to hear it went well for you today.
Glad you had the foresight to use numbing cream👍 x

@AGreatUsername I used to get mouth sores like that from low neutrophils on palbociclib - thats how I usually knew I wasn't going to pass bloods that month. Get thee a bottle of Peroxyl, itll help clear them up, or at least keep them at bay.

Love an MRI! I always take a nap in there when i go for full spine imaging. Something about the rhythmic thonking of the machine I find to be soothing. Actually they are moving me to whole body MRI scans and away from contrast CT for various reasons. You know you've been at this cancer thing too long when you have scan modality preferences. No more cannula or dye!

Morning everyone, and thanks for the nice messages yesterday. I like your snakes and ladders analogy, @TopOfTheCliff. I'm glad your chemo feels manageable and you are making progress through it. For me, the larger tumour probably means a more aggressive treatment plan and they are talking about ovarian suppression and AIs post chemo, rather than tamoxifen, but I don't have a confirmed plan yet - need an oncology discussion first.

@TopOfTheCliff I don't know what type yet, I guess you mean the hormone things? The doctor who said about the grade 2/3 hadn't got that information from the lab yet.
@MrsPnut I'm still waiting for the Bupa stuff to get authorised, paid out of my own pocket to see the consultant earlier this week and the private clinic was very impressive. Did you find the communication between NHS/Bupa worked ok? Slightly worried about slipping between the cracks between the two.
As the Bupa stuff isn't up and running yet I am still booked into the NHS hospital for the breast clinic on Friday when I guess they will tell me what the Bupa consultant said plus they should have the information about the hormone receptors. Feeling a bit apprehensive about this appointment as the Bupa was quite positive and if the NHS appointment is more doom and gloom then it will get my head in a bit of a wobble.

@fudgecat I love our NHS breast clinic, I have been a few times as I had my surgery on the NHS. All of my consultants work between private and NHS so no falling between the cracks. My best moment was at my first surgery pre op when my consultant proudly told me that he got the letter he wrote to himself
My BUPA comes with a cancer cash benefit and as I had 2 surgeries and radiotherapy on the NHS, I could claim and got about £3k. It paid for my holiday that I’ve recently returned from.

@TopOfTheCliff I regret not being able to meet up too, I shall have to venture to the south west and we’ll have another go

I hate MRI’s as I am very claustrophobic, I tolerate the pelvic MRI I need at a particular hospital but always refuse my liver being scanned as it is too far in. My head has to stay out of the machine.

Tooth root removed today, 3 hours of waiting for a 15m trip to theatre. I’d made beef stew for dinner as well so I knew it would be soft enough to eat. I can start Zometa infusions now, only 6 months later than planned.