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

@barberousbarbara I was due to have AC x4 (fortnightly) then Taxol x12 (weekly). The standard protocol in NL is surgery, rads, chemo. No idea when it will happen due to covid. We won't know whether the chemo is working or not as the offending lump has now gone. Surgeon is phoning me today. I hope you hear about your surgery soon

@citybumpkin I'm not going to be 100% sure mine has gone. We know the tumour has responded but we don't know if there are any rogue cells floating around. Weird as it sounds, you'll feel better once the chemo starts. Hope everything goes well today

@barberousbarbara My nurse told me that I have a very very small chance of rogue cells floating in my system. Its still a concern. Chemo is the preventative part of treatment for us. I'm trying to feel positive about yesterdays results but its so hard.

citybumpkin The fact that your tumour was LVI negative is a HUGE positive. It means it hadn't developed the capacity to connect with lymph and vascular systems. So the possibility of rogue cells is minuscule.

I was LVI negative from scans, for colon cancer, but when they operated they discovered that the tumour was more advanced and LVI positive. So now I'm having chemo, when otherwise I wouldn't have needed it.

I know when you're feeling low you the dark stuff takes over and stops you seeing anything good, but surgery first with positive results from the lab and clear margins means the cancer is gone. You won't have to worry about whether the chemo is working. For you, it really is a belt and braces procedure.

Please take any help offered to you for counselling or pills. Your mental health is the biggest concern for you now.

Hi 👋 I’d be very grateful for a bit of advice. I’ve just felt a bit of a lump in my armpit. I don’t know what it could be, it’s very small, could even be a spot or a cyst, but I’m panicking and do to know what to do now and need a bit of guidance if anyone could help. I should phone my GP? Yes? Or do I wait?

I literally had a health scare (about something unrelated); which involved bloods being taken and an x ray/MRI Scan of my chest 3 weeks ago and it didn’t flag anything particular.

Sorry I’m just in a bit of a tailspin....

@Thymeout Sorry to hear your diagnosis was more complicated than first thought. This whole thing really isn't straight forward at all is it? Thank you for your kinds words and positivity. I have an overwhelming concern of spread together with the fact that this thing is triple negative. I can't take anything longer term so chemo is as good as it gets. I know that the majority of us going through this will be fearful now and most probably for the rest of our lives. I watched my mum suffer from breast cancer. It had spread to her bones by the time it was discovered. She only passed away three years ago so for me the fear is massive.

I had 6 months of counselling with Macmillan after she died. They were amazing. Now memories of mum's final days are returning but now its me in her position. I know not the same stage but nonetheless those thoughts are there. I've managed to get my GP to get me a psych consult. NL doesn't have a Macmillan equivalent unfortunately. Today I managed to get out of bed before noon and have been in the garden with DD. One step at a time...

I just feel stuck in limbo. They're not going to biopsy my bladder growths for at least a month and no idea on my kidney function test so the ureterocele has just been left.

I'm in agony down there and on another lot of antibiotics. I'm still working and I'm fine while sitting but then I have to go to the loo and I can barely walk for the pain. I just want to curl into a ball with it, but obviously can't as I'm working. I can't take any more time off as our team is currently decimated with vulnerable workers off and self isolation-eers. Its not presenteeism as it's a vital job (emergency despatch).

I'm just so worried that they'll eventually do a biopsy and say it's got so much worse.

Sorry. Meant to say at least 3 months.

Hi,
I hope you don't mind me chipping in here to ask a few questions. I had my AML diagnosis confirmed yesterday, unfortunately. And I have a face-to-face appointment at the hospital tomorrow to discuss/consent to treatment and, I think, essentially make the plans for moving forward. From what they've said so far, they don't want to delay, because of severe neutropenia, among other things.
I've been making a list of questions to ask! But if anyone else who has unfortunately had to go through this, can think of questions which are important but might not seem obvious, I would be really grateful if you can share.
This is also a weird question, but I kind of want to know how awful the side effects of chemo really are...! From what I've been informed so far and what I've read, the Induction treatment for AML is quite intense. I have a bit of a sickness sensitivity....! I get horribly travel sick and had terrible morning sickness in all three of my pregnancies which basically responded to nothing, so I am scared of really floored by the sickness. Sorry, I know that sounds incredibly wet!
Hope you're all doing okay, in the circs.

Hoorah . Out of quarantine tomorrow , Chest drain out tomorrow ! It’s really pinching now . Boob looks good and is healing well .
I have to be at oncology at 9.30 for Herceptin injection . Phone them from car park and they will tell me when to enter the unit . I need to stay for 2 hours in case of allergic reaction ( it’s been 5 weeks since last jab due to mastectomy . )
Then a gentle stroll around outside of hospital to breast unit for drain removal and check up as we are not allowed to walk through hospital .
Pathology results on breast tissue are now taking 4 weeks I was expecting one to two weeks so that’s disappointing - understandable but disappointing .
But I am trying hard not to dwell on that .
I am so looking forward to being unplugged from drain !

I fell off thIs thread for a week as felt so rough but had a shallow bath this morning and got properly dressed it makes such a difference .

I do hope everyone is holding up in these very strange times .

@bananafish if i were you I would definitely try to get the lump checked out. Hope you can, and that it's nothing to worry about.

Waving at everyone else - sorry not to be more personal!

@bananafish
I hope you got through to dr and that they can allay your fears .

To everyone else my brain is so fuzzy but I am thinking of you all.

On oncology unit all masked up and all alone . It’s very weird .
Had Herceptin injection now waiting for two hours just in case .
It’s hot in this mask .

Emerging from isolation today for my three weekly Herceptin dose at the cancer centre!

@Jourdain11 it is worth asking them about preventative medication for nausea. I was given something by IV with the first type of chemo I had that meant I didn’t feel at all sick. I did have issues with alternating constipation and diarrhoea but nothing that drinking plenty of water and the occasional over the counter remedy couldn’t fix (except for the time DH tried to mend me with an overly large dose of prunes - that didn’t end well).

Other symptoms tend to vary more depending exactly what type of chemo you’re on, but do try to go easy on yourself - the fatigue sneaks up on you over the course of treatment, so save your energy and if possible don’t try to do everything you normally would. If there is a time for lowering standards and expectations of yourself, this is it!

citybumpkin
Thinking about it, a GA tends to affect your mood and it takes much longer than you'd imagine to get it out of your system. Hoping that this may be a contributory factor in your depression tipping over into 'extreme' and it will wear off naturally.

Also, I bet there are different points of view regarding chemo or surgery first, especially if, for whatever reason, you fall into a grey area. This is certainly true regarding treatment for ovarian and colon cancers. The medics take up entrenched positions and it's only when there's some definitive research that the protocol changes. And then there's some new research and it's controversial again...

My onc says that the future lies in genomes(?). The lab has your tumour. They can analyse it and pick up factors linked to successful treatment with particular drugs. I know that my tumour responds well to chemo - and this was a factor in it being recommended for me, but not for other Stage 2 patients, by the MDT. So in some respects you are in a better position than those having chemo first on a suck it and see/scan approach.

Anyway, it's done now and it's fruitless second-guessing. Apologies for the Polyanna line of thought. I wasn't always like this and do understand how you feel. Could be the Prozac talking, but I wouldn't be without it now. Whatever gets you through the night.

@Thymeout I think the depression is just a build up of a series of shitty events in the past few years - my parents both passed away. I just can't understand why me?

I asked my oncologist about testing the tumour after removal and she said that wasn't possible. I suppose I just have to hold onto the fact that it was stage 1, removed with clear margins, no LVI or lymph node involvement. That rads and chemo will be preventative. I know with TN there is a higher chance of recurrence/mets and theres nothing I can do to stop that. There is an overwhelming fear of the unknown and not being able to control this situation. We're all in the same boat here.

Hi I was diagnosed with thyroid cancer on 20th March just before the country went into lockdown. I had a thyroidectomy for an overactive thyroid and pathology results came back showing cancer that has spread to the lymph nodes. After all this is over with Covid 19 I will be having a neck dissection to remove the affected lymph nodes and then RAI.
Im really struggling to cope with not knowing when any of this will happen and Im due back in work on Monday after 6 weeks off for thyroidectomy but Im really worried about how Im going to manage to concentrate with the cancer diagnosis constantly on my mind and then the worry of possibly catching the virus working on the frontline.

concernedgirly I don't have any experience of thyroid cancer, my cancer was breast cancer, but I there don't seem to be too many people around at the moment and I didn't want your posts to be unanswered

Diagnosis and treatment for any kind of cancer is hard enough at the best of times and I can't begin to imagine how horrible and scary it is to be going through that at a time when there is no clarity about timings. I don't know where you are or what support is available to you but I found organisations like Macmillan and the specialist cancer nurses to be very helpful in talking me through my fears and worries.

I have also found the support and sensible advice on this thread helped to keep me sane through the scariest times. I am sorry that you have landed here at a quiet time but hopefully someone with more relevant experience will be along soon.

Just hear to repeat what @meercat23 said .
It’s very quiet here , I think we are all just hunkering down to get through this as unscathed as possible .
I am out of quarantine and managed a lovely walk as my exercise this morning . The world has sprung into spring while I have been inside .

Hello!

Haven't been around for a while so catching up with the thread.

I had a phone consultation with my oncologist last week and overall it was the best news I could hope for under the circumstances. The area of invasive cancer only measured 1.2 mm and was hidden in a slightly larger mass of DCIS and it hadn't spread to my sentinel node. This means my radiotherapy will be reduced to just 5 sessions rather than 15. Usually I would have an extra five booster sessions of RT because I'm under fifty but because the cancer was so tiny my oncologist just doesn't think it necessary. I will have cosmetic reduction and lift on my healthy breast in 3-4 months time. So all very positive and I am incredibly grateful to have got off so lightly.

So I picked up my prescription for Tamoxifen today but I am very nervous of taking it. All I've heard are horror stories about weight gain and depression and painful joints, not to mention zero libido and vaginal atrophy and increased risk of uterine cancer. It just all sounds so miserable that I'm wondering is it bloody worth it Is it? I've read some stats that day it reduces your risk of cancer coming back by up to 50% which sounds amazing, but if that only means the absolute risk only goes from 2% to 4% reduction in risk then that's pretty rubbish pay off for all the misery

Does anyone know what the real absolute benefit is?

@peaceanddove congratulations on your final results — it must be a huge relief!

I’ve been on tamoxifen for a couple of weeks now, and I can’t say I’ve had any side effects. Possibly they’re the cause of the very slight nausea I have but if that’s as bad as it gets it’s no problem. I’m not sure though if the side effects are cumulative and sneak up over time. I have no choice but to take it as my hospital won’t offer me surgery/radio/chemo yet due to the virus.

@peaceanddove I couldn't tolerate tamoxifen. I managed for 2 years and I'm now on aromasin (exemestane). I'm having real issues with my bladder. Growths of done kind. I got as far as a cystoscope and ct scan but everything's on hold now. Waiting for a biopsy and need a urereterocele opening up so my kidney can drain. At least 3 months wait.

With tamoxifen I gained weight, flushes were pretty bad and sex life dried up. I think I just have a low tolerance though, so you might be ok.

@peaceanddove I've finished 5 years of tamoxifen last year and although I did have some of the side effects eg hot flushes etc, the way I looked at it was that these were things I would have had going through the menopause anyway, just a few years earlier.

I don't know the actual figures or %s but my oncologist was absolutely adamant that taking it would significantly reduce the chances of a reoccurrence and that was good enough for me.

That said, I did go on to develop uterine polyps which needed dealing with.

It's, obviously, a personal decision but maybe you could try taking it and if the side effects affect your quality of life significantly, you could always reassess your decision?

Asking here because I am not sure what I have been told .
DCIS with invasive elements .
2 lumpectomies but neither with clear margins . Clear lymph nodes .
HER2 positive .
12 weeks Paclitaxel and ongoing Herceptin.
Mastectomy with skin expander done 17th March as the DIEP reconstruction was pulled the morning before the operation .

I think I am waiting for pathology results from mastectomy but it’s now 3 weeks . Should I be pushing ? I presume that any results would be delayed due to the present health crisis but I am getting anxious .

I did ask the bnc nurse here and she said to just wait but , as I said , I am getting anxious. I am normally very pragmatic and laid back this is new territory for me !

Has anyone else had the same scenario?

I’m popping my head around the door again. I had a lumpectomy for pleomorphic lobular bc on 17th March. Still no news re results. Results appointment was cancelled, as the lab needed more time for mine, nurse said. I’m hyper anxious.

Hello to everyone x

Well took my first Tamoxifen last night so will just have to wait and see how it goes. I know my MIL took it for ten years and had zero issues. I'm wondering if the link to weight gain is more of an age related issue because most women naturally gain weight in middle age.