Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

New thread

Thank you @LemonDrizzle10for this lovely shiny new thread ❤️

Should @tothelefttotheleft not have seen, I have responded to you in the dregs of the previous thread. I really hope you can learn to advocate for yourself and get the surgery you want.

PS. Happy Fryday everyone 🍟

Well done Top. As lemon drizzle says - what an achievement. And I do hope your feet feel better soon.

I loved your house. It’s what I’d go for if on my travels and staying in an Airbnb. In fact my brother once described something I’d chosen for us to stay in for a week as ‘the kind of house that would make you clasp hands with your wee school pals and run past with your eyes closed on the way home from primary school’

He on the other hand has us staying in very modern apartments or houses when we go away and I was really glad of it in Fife last week when I was freezing to the bone and had to be defrosted on the couch with full blast heating and a big duvet. It was a far cry from the old days when at a family gathering and the children would be put to sleep top to tail in bed and kept warm with overcoats or an aunties Musquash coat. Billy Connelly describes it brilliantly in one of his stories. In fact the first I heard it I thought ‘is he somehow related to us’.

Thanks for the new thread @LemonDrizzle10

Hooray @LemonDrizzle10 thanks for the new thread! To be clear to lurkers this is for people who think they might have, actually do have or used to have cancer. There is a separate thread for relatives and friends called The Storm. I also started a new thread for The Great Recovery for those who are clawing their way back to fitness and the New Normal and @mowly77 started a thread for Stage IV patients to hang out.
I could be eligible for any of these threads. I had triple positive breast cancer no 1 in 2020 during lockdown and went the full mile with chemo surgery radiotherapy and Herceptin, Zometa and anastrozole. Despite breaking my ankle during treatment I recovered my strength and fitness and sailed solo round the UK while my DH cycled and we raised £12000 for Macmillan. I got back and two weeks later found a new lump on the other side which was Triple Negative breast cancer no 2. Back to square one I had chemo surgery radiotherapy and then 6 months of Capecitabine which finished this week. My feet are still blistered and I am profoundly exhausted. I had a bone scan on Wednesday to rule out metastasis in my shoulder so am waiting for the result. I am off on a three day veggie yoga and meditation retreat this afternoon which will be good for me.
I need to find the exit to Cancerland which for me is a little wooden trapdoor set in a wood. For some it is just an automatic glass door that sweeps them through the corridor back to safety and for some they never find the door.

@ForfarBridie our house has been a Christian Bed and Breakfast as well as a recording studio and home of the Fabulous Poodles rock band, a council home for 14 naughty boys and a policeman, and now is apparently the home of the bicycle museum. We do put up touring cyclists under a scheme called Warm Showers if they arrive by bike. It is a lovely house to live it if a bit draughty. I love it!

Message to newbies: Welcome and may your stay be a short one while you have tests. The first rule of the thread is Don’t Google! And while you are waiting for a diagnosis or a plan try to keep busy and distract yourself as it is the worst part of the whole journey. If you are struggling ask for help from your GP or Macmillan Cancer Support. It will all be fine!
Top

Thanks for the new thread.
Stage 4B Primary Peritoneal cancer (May 2023), treated like Ovarian Cancer, very likely to recur.
Last chemo is next Wednesday- yeah.
Also eligible for all threads, but will be aiming towards the Great Recovery, for however long I can.

Just watched an Instagram post Julia Bradbury about grounding. I was sceptical previously- but it seems there’s an evidence base for it helping some things - even wound healing.

I’m still a bit sceptical, and if I stand on our grass I risk standing in dog poo 🤮

Does anyone know more about this. Definitely not advocating it as any kind of treatment for our situation- just curious.

Thanks for the new thread@LemonDrizzle10
Bc er+ pgr+ her2 - in July 2021 , treatment lumpectomy, chemo and radio. Struggled with anastrozole, letrozole- still on it( just) Hoped to be well on the great recovery but flattened by dms decline and death earlier this year- planning now in the Great Recovery in a very changed world.

New here! Hi. Firstly, to everyone on here, my very best wishes to you all. I'm heading off now for my appointment in the breast clinic after seeing my gp last week with a tiny pebble like lump. My sister was diagnosed at my age and died 5 years later so am anxious++. I've nothing of benefit to add, just wanted to say hi

@LemonDrizzle10 thank you for the new thread!

I'm stage 3c ovarian cancer diagnosed December 2020 and was told I am incurable from the start but they seem to be keeping me going! I've 6 cycles of carboplatin and paclitaxel chemotherapy with major surgery after the fourth cycle, and am currently on a PARP inhibitor, Niraparib.

I'm so thankful for this thread and all of you on here - this has to be the kindest place and also the most 'sensible', if that's the right word, for support. I've had to stay off the Facebook groups for both ovarian cancer and also PARP inhibitors as they are all so 'doom and gloom'.

@MrsTaytodarling welcome to you, I'm sorry you find yourself here and so sorry for your loss . I hope you get some reassurance this afternoon.

@RedRosesPinkLilies my lovely woo yoga lady gets us “grounding” when we are at the beach in the summer. She also does “ tapping” which is fun. If you can suspend rational thought and embrace the woo it is all very soothing. Sometimes just having a quiet space to breathe is helpful.

@MrsTaytodarling welcome and let’s hope all is well. Either way you are most welcome to have a good vent here. We have a Virtual Rage room full of imaginary crockery and small electrical items you can smash if you need to, or a Virtual Pub somewhere round about. I’ve lost its whereabouts.

Off to pack my bags now. Will report from Cancer Lifelines retreat later.
Top

Am another member of the BCC - breast cancer club - ER+, HER2-, grade 3 IDC (thankfully with no metastasis to lymph node or anywhere else) with the added bonus of mutations on both BRCA 1 AND BRCA 2. The latter makes me a very rare breed indeed. Diagnosed in July, mastectomy end of August, first round of chemo 19 Oct with only seven more to go, and three weeks of radiotherapy to follow.

To echo @TopOfTheCliff 's advice to those waiting, do not google. And even when you have a plan, only google what is relevant to you. Immediately after my initial diagnosis, the only thing I did research was mastectomies because I knew that I wanted one, and that my plan, not to mention my diagnosis would well change again due to further tests/MRI/biopsies etc.

If possible, stick to Breast Cancer Care and Macmillan as in the course of my research, these were the most valuable resources online. I found The Complete Guide to Breast Cancer invaluable too, only reading the sections as and when they applied to me - no point getting ahead of myself and reading about stuff that wasn't relevant.

@LemonDrizzle10
Loving the new thread name
Very apt coz yesterday I spent to whole evening fretting about tomorrows worries
Scan results and presumably treatment options on Thursday, I'm very new to this
(Ovarian cancer, with probable kidney cancer)

I’ve missed hearing about the Virtual Pub: it’s Friday afternoon so I might head there now.
What’s the pub called?

@TopOfTheCliff
@doublec
I have indeed googled
NHS apparently has very poor stats for ovarian cancer, compared to Europe

@thesandwich
Sorry to hear about your DM

Thanks for the thread. I'm in The Great Recovery too, but also still dipping into this one.

Endometrial cancer 3a with a surprise extra of a 1a spot of ovarian when I went for a second opinion. Hysterectomy and chemo, turned down radio, and finished nearly a year ago now, but with a recurrence scare during spring (just granulation tissue).

Today I'm recovering from an op yesterday to remove a tonsil remnant (unconnected to the cancer) though I've been out for a coffee and mooch round the charity shops with DD who came back from uni to drive me and make sure I didn't die overnight (!) but is going back in a bit.

Rule number 1 is don’t google @Unex - you’re only allowed on MacMillan or Cancer research pages. Google is terrifying!!
MacMillan are great on the phone too - all sorts of medical, emotional and financial support is available from them.

Thanks for the new thread @LemonDrizzle10 , it’s been very helpful to me since I was diagnosed with bc in August.

I saw my oncologist this morning as he wanted to check whether the chemo is working to shrink my bc lump. I’ve only had two rounds of EC but he thinks he feels a change, that it is softer and smaller. Hooray 😁! Good news to take me through the next few months of chemo anyways.

I forgot to ask him about drinking alcohol, is it ok whilst on chemo? If so, I might join you in the virtual pub!

I think it was called the Patience Inn and it was on a lonely moorland road. There was a table with cosy settles to gather round. I think they also served tea for those off alcohol. Who has been around long enough to remember from old threads?

Thanks for the new thread @LemonDrizzle10 I don't post here very often as am spending a bit more time on the Stage 4 thread and don't want to bring you guys down but I do read your posts every day.

After having had BC last year (WLE & 15 rounds radiotherapy) in June of this year I was diagnosed with an unrelated, incredibly rare and very aggressive stage 4 appendiceal cancer with mets to ovaries, colon and peritoneum.

Currently having palliative CAPOX chemo. Have a CT scan this afternoon so see how it's going. Massive scanxiety, but what can you do??

@TopOfTheCliff yes it was called The Patience Inn! I remember we were all laughing about the sign hung outside it which I think was a lady in a chemo scarf. There was also a link with pirates as you were sailing your boat at the time.

@Unex I know how frightening it is but by way of encouragement, according to Google, I shouldn't be here now. The statistics for ovarian cancer are indeed very poor but they are (of course) based on old data. There are more treatments available now and remember that you are an individual. Once you get your treatment plan you will feel better and can eliminate all the 'what ifs'. There are a few of us here with OC who will be able to help you once you know what you're dealing with.

I've found the description written by @catnidge in October 2019 who wrote:

OK, shall we declare the 'Patience Inn' officially open.

This pub is situated in a volatile, ever-changing landscape, its sign of a bald headed one breasted female creaks in the wind. No one really wants to visit.

However, once you are inside this pub is a refuge for short or long term travellers.
The fire is always crackling, plenty of comfy seats to mold around achy bodies. Our outside garden area is sunny and welcoming.
Food and drink are always available, bacon sandwiches, afternoon tea. You name it, we have it.
Most importantly there is always good company in the Patience Inn.

From the end of our previous thread:

@tothelefttotheleft

What struck me about the letter you posted on our previous thread, was they way it refers to Her2 as "Herceptin receptor". Herceptin is the brand name for the monoclonal antibody trastuzumab; it isn't a receptor but a targeted immune therapy for Her2+++ disease.

The doctors generally seem to use the term Her2 or sometimes Erbb2 or neu. I've literally never seen or heard of anyone calling the cancer as being Herceptin receptor negative.

As doublec mentioned, it sounds like they might have diagnosed it as Triple Negative?

Sorry, I know this isn't about the mastectomy which was your actual question!

Also from the previous thread:

@Silkiebunny

Thanks for your reply and link! I clicked on the study they were referencing about the 3-5 hours and found the following info which I'm pasting here in case it's helpful to other people too:

Three MET-hours is equivalent to walking at average pace of 2 to 2.9 mph for 1 hour.

The benefit of physical activity was particularly apparent among women with hormone-responsive tumors. The RR of breast cancer death for women with hormone-responsive tumors who engaged in 9 or more MET-hours per week of activity compared with women with hormone-responsive tumors who engaged in less than 9 MET-hours per week was 0.50 (95% CI, 0.34-0.74). Compared with women who engaged in less than 3 MET-hours per week of activity, the absolute unadjusted mortality risk reduction was 6% at 10 years for women who engaged in 9 or more MET-hours per week.

Conclusions: Physical activity after a breast cancer diagnosis may reduce the risk of death from this disease. The greatest benefit occurred in women who performed the equivalent of walking 3 to 5 hours per week at an average pace, with little evidence of a correlation between increased benefit and greater energy expenditure. Women with breast cancer who follow US physical activity recommendations may improve their survival.
_
https://pubmed.ncbi.nlm.nih.gov/15914748/

I'm not hormone-responsive (well, at least not ER or PR, who knows about AR etc) but I think it's very helpful to have this guideline. Thank you @Silkiebunny In any case, I can't picture them having had enough or possibly any Her2+++ Er-0 Pr-0 patients back then who survived, so they might also have had similar benefit. The study was done with women diagnosed 1984-98, so I think that's pre the Her2 MABs etc.

It's very encouraging too that it doesn't have to be high impact sport, normal walking is good!!

@Ikeameatballlunch

Thank you so much! 🙏I love those excerpts you posted. 😄It really is very encouraging isn't it. I have saved the images of those posts you'd scanned from the book on my laptop.

Pre cancer treatments I used to do Combat fit, dance, pilates, yoga, cycling, walking etc and loved it. Now I am incredibly weak and it's easy to feel hopeless, but those texts helped. The message I got was that the key is to do something and to gradually do more at the pace that is right for your own body. I know I have been through a LOT that has been very tough for my body, several other conditions on top of the well over a year of toxic stuff at the chemo unit, surgery, radio, and so on, so I need to be kind to myself while gently challenging it to achieve more and build up.