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.

Hi everyone,
I'm a long time lurker on this board but just wanted to jump on and say hello. I'm 43 and a mum to 2 young children. I was diagnosed with breast cancer in April '21 after I found a lump. It was grade 3, 12cm tumour (no that's not a typo, it was 12 centimetres, god knows where it had been hiding!), spread to lymph nodes. I had 6 months of chemo (EC & Paclitaxel), followed by a double mastectomy and 3 weeks of radiotherapy.

In April 2021 I thought I was going to die. I mean, I literally thought I'd be dead by the end of the week and it was terrifying. Somehow, I'm still here. I'm still alive and kicking. I have hope for the future.

I made the mistake of looking at my 'predict' score, and, well let's just say it took A LOT of soul searching to talk myself out of a very dark place. Those scores are already 15 years out of date, and that data does not define ME.

If anyone is reading at the start of their journey then please have hope for the future. 18 months on and I am feeling absolutely fine, completely normal and almost back to my old self. I am currently on daily Letrozole, monthly Zoladex, and Zometa infusion twice a year. menopause hasn't been too bad for me and I am very grateful for that. I do take glucosamine and that has helped by poor joints which have taken a bit of battering!!

Hello and lots of love to everyone who finds themselves here... a place I never wanted to be but I have found the cancer community to be wonderful and supportive.

Best of luck to those of you still undergoing treatment and waiting for test results. The initial waiting was the worst part for me, but once I had confirmed diagnosis, test results and a treatment plan I found my head stopped spinning so much and I could focus on my treatment.

I am still on some treatment, I have surgery planned for the future and will continue to be monitored so I very much feel I'm still on my journey.

When I was first diagnosed I found comfort in other peoples success stories... I hope that I can be a success story for others.

Thank you so much for your thoughtful post @PurpleBananas22 . I have a similar diagnosis, also in my 40s, though the other end, and my children are teenagers. (Though I did have a smaller tumour!) I have been feeling in a pretty dark place since getting my surgery results earlier this week and looking at Predict. Yours was the story I needed to hear today, particularly because I am also looking at ovarian suppression and AIs and have read so many difficult experiences on the cancer forums. I've been thinking 'what's the point of surviving if I'm going to be in constant pain and fatigue'. So it's fantastic to hear you have found it manageable if clearly not a walk in the park. Thank you for posting - and I wish you all the best for your ongoing treatment.

Hi @dotty2. What’s next for you - are you waiting to hear about the next step? Gosh those predict scores really know how to ruin your day don’t they. I can’t remember my exact score, but I’m pretty sure it was single figures. It made me weep at the time, and I’m usually very resilient. I’ve decided to put that to one side and focus on me - I am not a statistic and certainly not one that is already 15 years out of date.

To be honest, it’s not been a total breeze for me, there have been many tears and maybe the odd tantrum, but I do feel like I have had a fairly drama-free time of it. I tolerated chemo very well, only lost half my hair so It just went very thin rather than bald. I had a good response to chemo and the cancer shrank significantly. My surgery went really well and by then the cancer had gone from my lymph nodes so I only had to have a few removed. Menopause wise, I had a few hot flushes to start with, but they’ve gone now. My body feels a bit tender and weaker, but I can start to build back up my fitness now.

I know there are plenty of side effects from everything we’ve been through / are going through, but I do feel absolutely fine, and dare I say it, pretty normal! I’m happy to answer any questions on my various medications too x

Thank you - next steps for me are CT scan and oncology appointment. Expecting chemo, then radio, then endocrine therapy and possible additional drug treatment - all tbc after the oncology conversation...

@PurpleBananas22 thanks so much for your post, the start of your post is where I am at the moment and it's very reassuring to know that there is light at the end of the tunnel

Is there anyone in the Stage IV club who has claimed terminal illness cover on their life insurance? Im wondering if that could be an option to get me out of this horrible work situation Im currently in. As far as I can tell, there is something around the 12 months or less mark for survival but was just curious. Critical illness cover already paid out a few years ago, but that was never going to be enough to cover my salary. I also have income protection - is this a Maggies or Macmillan question perhaps before I start dealing with my inept HR department?

@fudgecat best of luck to you. I'm sorry you are going through this. Take each day one at a time and before you know it you'll be out the other side.

@HerbalRefreshment give your insurance provider a call and ask. Some Providers say you need a diagnosis with less than 12 months survival (and their own doctors will need to verify this). Other providers don't have this clause and will only payout on death of the policy holder. If your policy is through work then ask for a copy of the T's & C's.

Sorry your having a hard time at work. Any chance you could look at long term sick leave or reduced hours to make it more bearable?

Herbal, did you take your policy out yourself or via a broker/advisor? My advisor has been worth her weight in gold with my critical illness (unlike the actual insurers and GP, thanks to them the claim still rumbles on nearly 4 months later and I’ve had to go back to work in order to survive).

I know Legal and General require their doctors to certify that you have less than 12 months left. Not sure re anyone else.

Im not sure of your situation, but if you’d hoped to leave your life insurance to a partner or children I’d certainly look at income protection and PIP/ESA first if that could cover you for a while.

Thanks everyone - life insurance is via work, so I will have a look at Ts&Cs tomorrow, though I cant imagine any doctor would currently sign me off for 12 months or less (thank god!). And my critical illness claim did take about 4 months - because the advisor could never get through to my GP either!

Ill check into long term leave and income protection options too. I am due out for three weeks in December for more surgery, that may be a good time to just.. not come back. I have to go into the office next Thursday, I think ill pop by the nearby Maggies and their open financial advisory chat and find out what is what.

Working helps take my mind off things but it is such a mess that its a negative impact rather than a positive one.

Bad news for me today. Chemo is not working anymore, so I’ve had all those hellish side effects for nothing. It was always a possibility, but I feel crushed. I had a bad feeling it would be awful news as the pain has come back and I am breathless again.

They will try palbociclib and letrazole next. But I feel quite hopeless. Mainly on behalf of my innocent 4 year old. And I have so much admin to do. No will etc. Home alone with DD. Crushing absolutely crushing.

@HerbalRefreshment i know you’ve had different lines of treatment too. Maybe everything isn’t as despairing as I think. But I have a bad feeling it is.

@mowly77 , oh what awful news. And chemo is never something we do for fun, so to hear you could have been in the same place without it is absolutely heartbreaking. Thinking of you.

@mowly77 I’m so sorry to hear your news. 🌺🌺

@mowly77 I am so very sorry to hear your news. Do you have someone you can talk to tonight? If you need a chat feel free to PM, being stuck home alone with your thoughts is horrible. Don’t give up hope until they tell you there are no more treatments to try 🌷

Mowly, I’m so sorry to hear this. ❤️

I'm Sorry to hear you news Mowly. Sending you love and positivity x

@mowly77 Im so sorry this has happened to you. I hope things look a bit brighter in the morning.

Sending love @mowly77 and know we are thinking of you and hoping desperately the next plan works better. You know you are among friends on this thread and can use us to offload all those feelings you don't want to spill to your family.
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@mowly77 so sorry to hear your news and really hope the next treatment works better for you. Sending love Xxx

@mowly77 like everyone else I'm so sorry to hear this. I can't imagine how hard it must feel. Summoning positive vibes and lots of swear words on your behalf. How are you doing this morning?

Sorry to see your update @mowly77. I hope the other treatment helps. Cancer is shit.

Thank you for all your lovely messages and more importantly your swear words. I am vacillating wildly between abject despair & tears & a mad flurry of activity as I am trying to bring my next line of treatment forward. And line up those fabled MN ducks with all the horrible admin like actually finishing my wretched will. Next treatment is palbociclib and letrozole, so already been decided but they were planning on me having chemo today so it’s not scheduled to start until 21st. No way I can I wait until then so I’ve been on to all and sundry pointing this out. Onc appointment on Tuesday so hopefully she’ll play ball. If not I’m planning a sit in in her office until she gets a grip. Stage 4 deserves more etc!

love to you all and all the various types of shite you’re all going through. Thank you for letting me vent.

So Sorry to read this such fucking awful news let's hope the new treatment plan is a good one x

Hey @mowly77 - that first progression really sucks - especially if youve had prior good results on the treatment. However, look at it this way, once you get stabilized on palbo/letz there is no more trundling into the chemo room every few weeks and going through the cycles. There IS a cycle with the P/L, but you can more or less take it and forget it. Be aware that they will want to do a 2 week blood draw the first month to make sure your bloods are ok, and then its a draw once a month. You will be started on the highest dose of 125, but not a lot of women stay on that, and its ok to dose down, same efficacy.

If that doesnt work, dont forget you have olaparib in the wings for your BRCA2. And after that is capecitabine. There's the SERDs like faslodex, or one of the newer oral SERDs. And after that I believe its everolimus and then I think its back to the chemos, unless you have a mutation at some point to a different tumor profile. There's also targeted radiation if needed, liver ablations, or you can try a study at some time. Make sure you ask your oncologist about the cancer receptors - will they be testing your progression for any cancer profile changes or if that's not necessary at this time and if its not, why not.

Does this line up with what the Marsden recommended when you spoke to them? You were always going to move on to p/l, right?

I hope you can get settled in to the new routine pretty quickly, but its ok to wail and be upset at this news!

Great post @HerbalRefreshment you are so knowledgeable! Sending love to @mowly77 too.

I have some cheering news. My lump has shrunk from 14mm to 7mm after three doses of EC which is a 7/8 reduction in volume as my clever DS has pointed out. I’m celebrating but still won’t hear till next week if the plan will change.

I then had a lovely meeting with a consultant radiologist who went through five years of mammograms and showed me the tumours which appeared to spring up quickly between routine scans but showed clearly. We agreed that a recurrence is more likely in future than a third primary tumour and as they are easily visible I should stick to vigilance and regular mammograms. They are going to chase up more gene tests for me through the local medical school. It was a good experience and answered my questions. My BCN is lovely and even asked if I want to meet her away from the hospital to talk instead of at the clinic.
I feel calmer now and less confused even though I don’t have any more hard information. It’s so hard to make sense of all this stuff.

Here’s hope that the weekend brings peace and some fun to us all
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