Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Sorry for my delay in coming back to the thread. I had my appointment that I paid for, they did an ultrasound and biopsy. Consultant said it's very unlikely to be cancer before my ultrasound, then said it didn't look great after the ultrasound. I got the results yesterday. Triple negative cancer grade 2.

Mastectomy, chemo and rads plus lymph node clearance . I'm having ivf treatment starting pretty much immediately to collect eggs and freeze them. DH will have to have an awkward moment with a magazine in a room to make embryos, then it's on to chemotherapy.

They said it's extremely rare to have cancer at my age (30) but it's clearly not unknown. I've had so much information bombarded at me in the last 2 days it feels unreal. I'm exhausted and pissed off, if I'd left it til November it probably would have spread.

Know your bodies ladies, check yourself and fight to be heard if no one is listening.

Oh @Bakewellisntjustatart I'm so sorry to read this. It's such a shit situation that you had to pay for this (literally and figuratively) :-(
What will be your next step, can you have chemo on the NHS?
All the best for your ivf treatment xx
I had my PET scan results back, instead of radiotherapy, I'm being referred for chemo as one lymph node is high grade. News knocked me for six so I'm having a quiet day watching mindless crap on the TV.

Whoops just realised I tagged the wrong name @Bakewellisntjustacake

@Bakewellisntjustacake I’m so sorry to hear your news. I hope you are able to get treatment through the NHS soon.

Hello I'm still here biding my time. Unexpectedly had a phone appt, whoever booked that had misunderstood the notes, nurse and I agreed (and both expected) that I'd need a face to face meet and examination with the consultant in two weeks to make final decision on treatment. So that's next week (so three weeks)... Meanwhile I'm biting my tongue and still not telling anyone, especially as my anxious 14yo has a minor op in hospital on Friday. Another very short notice booking but after waiting 2 years...

@Bakewellisntjustacake so sorry to hear of your diagnosis when you're so young.
I am in a similar position but only stage 1 and I'm 51. Treatment will be similar I'm still waiting on specifics. I had no lump, nothing, only got detected because I'm taking part in an imaging study. And it took many inconclusive scans and finally a biopsy under MRI to diagnose. All along it was "probably nothing to worry about, but we need to make sure" until the end.

Hope everyone is having an acceptable week.

@quinin hope you're doing okay, I know several families where an infected teen did not spread it despite hardly isolating from the household. Good luck!

@Bakewellisntjustacake Sorry to hear your news, there is a secret FB group if you message the Younger Breast Cancer Network page. There is one for under 30 and for U45 as well as dedicated fertility groups.

@PaddingtonStareBare Hopefully chemo will be kind to you, it affects us all differently.

@NewlyDiagnosed It’s annoying when things like that happen.

My 2nd docetaxol was delayed by a day due to it being delivered to pharmacy in too low a volume of saline on Tuesday. My oncologist didn’t want to risk it because “if it is going to wrong, it will go wrong for you”.
I went in for it yesterday, and it went fine. I also saw my gynae oncologist for a rummage as well and my vaginal cancer is still NED, with just a band of scar tissue on the posterior wall. She’s happy with the outcome and I’ll see her again in 3 months.
I did manage to get lunch both days though, Scampi and chips on Tuesday and Caribbean chicken and rice yesterday so it wasn’t all bad. Just the steroid insomnia and munchies to cope with now.

Well, looks like I’m back on this thread. 18 months after a lumpectomy for BC, and six months after a clear mammogram, it seems to be back again in the same breast. I’ve been back and forth to the hospital and GP complaining of pain, always being told it’s normal, but this time “for reassurance” they offered an ultrasound, and they - plural - showed on there. My first diagnosis at my first ever mammogram only came about because I was part of a trial which meant I got an enhanced mammogram. It never showed on the standard mammogram. I’m very depressed.

@daisypond I'm really sorry to read that, it goes as others have said, trust your body. Its a shame we have to keep fighting as we do :(
Have you been told of the next steps? x

Oh @daisypond, I wish you all the best! That's not great, my commiserations.
With my type of breast tissue I'd never trust a 'normal' mammogram now... I got the all clear too and then the enhanced scan (same study I would guess) found something , and 5 months and a variety of enhanced scans plus observation time later they finally diagnosed BC two weeks ago. Awaiting my final treatment plan, so feel in limbo at the moment.

I really want to find this thread soon.

I've just come to wave limply at you all from the sofa where the heated blanket has made a return! I had my second "chemo-lite" on Tue (Kadcyla) and although I'm not sick with it, I'm so tired I can barely sit upright. I think it might be because this is the first one in conjunction with the daily Anastazole tab which keeps me in menopause. I had said I'd go back to my voluntary job on Monday so I hope it lifts over the weekend.

Thinking of those awaiting treatment plans - may they arrive as swifly as possible. Now back to my cocoon...

@Bakewellisntjustacake well done for persevering but this is one of those times you don't want to be proved right. But how incredibly frustrating and hardly starts you off feeling confident about your drs. The treatment regimes are pretty standard from here though. My dd is an IVF baby - now 16.

@PaddingtonStareBare keep an open mind about chemo as some people seem to sail though. If you do have any issues - many of us here can relate if necessary.

@daisypond oh daisypond I can imagine how depressing that must be - we all want to get off this train and not get back on (and not so soon at least). I think I'd need to thoroughly wallow for a bit and absorb the situation - and then just crack on.

@HauntedDishcloth I'm rather disappointed at my problems with Kadcyla. Thing to remember, is that it's 'lite' because it's targetted rather than systemic - but the chemo part of the drug is more toxic than the full chemo drugs (that's why it can only be used when targetted).

@MrsPnut sending good chemo karma waves. I can feel my drs heart sinking when I come into view with my never-ending saga of treatment woes. Had my PET scan yesterday and bled like a pig and nearly passed out. Managed to drag myself to the pub for lunch yesterday though ;) See how my bloods are on Tuesday. No way can I see me doing another 11 cycles of this.

I'm back at work and juggling is a XXXX nightmare and I feel like I'm constantly bleating' what, sick? no, no - not me, not sick at all... I can catch up, honest...'

@Paddingtonstarebear I have been lucky in asmuch I have not had a bad time with chemo. Had 14 cycles so far, carbo/taxol and carbo./caelyx. Minor irritating side effects like queasiness, loss of hair (which actually is a major side effect!) I have been able to go about a fairly normal life, although I am retired so not having to go to work every day.

Hi all

I have been MIA. I decided in August to step away from social media/ forums and only use my phone for calls / messages until the DC returned to school. I was becoming a cancer obsessive getting myself in a spiral which is not good. I also twisted my knee badly and not being able to walk the dog has not had a great effect on my state of mind either. I hadn’t realised how much I rely on walking to feel better/ look better. The reflection in the mirror seems inconceivable and I can’t imagine looking normal again!

I’ve read back a few pages to catch up.

@Bakewellisntjustacake - I am sorry you find yourself in such a rubbish situation. It’s outrageous. I hope you can get your treatment sorted on the NHS and v best of luck for your IVF.

@daisypond - I am sorry to hear your news. I can understand you being very depressed. Well done for persevering about your pain though.

@MrsPnut - I hope your extravasation has calmed down?

@Lunificent - I am her2+ and finished chemo at the end of august. I am still receiving Phesgo. It’s looking like 6 weeks between end of chemo and surgery which I am told is within best practice guidelines. Tough to be so close to the op when you’ve mentally prepared. I just want mine cut out now.

Sorry for not mentioning everyone like Bridget was so good at but you’ve been in my thoughts and I’m sending best wishes to you all x

My chemo experience is similar to @paddingtonstarebear so far - queasiness which was sorted by anti nausea meds, extreme tiredness for a few days, and hair loss. I went for the shave yesterday as I was sick of shedding long hair all through the house, and my scalp was hurting from the weight of my hair pulling on the follicles. I've ventured out today with my chemo head wrap on and so far I feel ok about it. I need to get my wig sorted ready for work video calls on Monday.

Since the tiredness passed I have had more energy than I've had in a long time, which was unexpected. I'm prepared for the cumulative impact though as I have more sessions, but this first round has been far more bearable than I had thought. Is it weird to consider myself lucky?!

Sorry, I referenced the wrong person. Should have said @thereisonlyoneofme.

Sorry to hear your scan was an ordeal @Acinonyx2. Do you get the results next week? Also sounds like you could do with a lighter work load - easier said than done I presume!

I hadn't realised that about the Kadcyla intensity. I'd blithely assumed that as there were less active agents than previous chemo it'd not be as strong. However, it's kicked my butt big time this 2nd cycle & although no sickness I felt as bad as my very first chemo, which leads me onto a question (& self-pity rant!)...

If you've had a platelet infusion (I think MrsPnut has & there maybe others), what were the criteria/was it determined by a blood test? I've had the bloody nose for days, weird blood blister things on my face & a lot of bleeding from a "playful" cat scratch. But mostly I'm just clutching at straws for a quick fix!! It doesn't say anything in the chemo book from hospital about feeling utterly wretched so just par for the course I guess. I know it will pass, hopefully sooner than later, but that doesn't give any concrete help when you're in the midst of it.

@HauntedDishcloth Platelet count should be in the range 150-370 10*9/L and mine bobbed around in the upper 200s until last weekend when it dropped - to 13 and was clearly still dropping. I read, that the threshold for chemo is about 100, for minor bleeding issues 50 and transfusion somewhere around 10.

You should be having regular bloods for Kadcyla - can you see what's on your results? Mine all go up online immediately so its easy to track. My count always bounced back before treatment though - and if I hadn't had all the bleeding and got tested I would never have known it was crashing. Sounds like you're a bit low at least. Definitely mention any bruising or bleeding to your nurse/dr.

I got relentless nosebleeds on herceptin previously but curiously that hasn't happened this time. It's all a bit mysterious and confusing.

My brain is clear (I've asked to buy a picture ) but I'm now getting another scan for my lungs - checking for pneumonitis

@SewingBees my chemo was pretty rough but I bounced back completely after about a month (and before surgery and glue-gate) - and told my dr I felt fitter than before I was diagnosed (fondly remembers that short-lived phase...)

I have thought long and hard about this post. I know so many are going through tough times. But I hope that I can give some hope to others . I was diagnosed with stage 4 ovarian cancer in June 2020 (formally lizdeflores). I went through chemo and surgery and I'm still receiving a maintenance drug. So I'm facing an uncertain future with a mixture of denial,optimism and the occasional bout of pessimism .
I remember feeling I could never get through diagnosis,treatment and recovery. But I did and today I finished my first 10k!!!
I may never take my medal off!

@runningwithoutstopping That is brilliant, well done. It's a real achievement and gives me hope that I too can get fit again once treatment is over. I'll never be a runner but I'm determined to get back into cycling and lose the weight I've been gaining steadily over the past decade.

My dog came third in the terrier racing at the local show today too 😁

@Runningwithoutstopping that's great - you know how evangelical I am about benefits of exercise (just don't ask how much I actually walk the walk...)

@SewingBees well done to your dog

@Runningwithoutstopping congratulations! Thanks for coming back, this gives hope to everyone! I'm still running at the moment and raised £800+ for charity with my colleagues at the weekend. Later today is my next appointment with the consultant where I presumably find out my timetable in greater detail. This coming Friday I have a pre-op (mastectomy) checkup in another part of the hospital so I'm guessing the first part of my timeline is already fairly well defined. I think this week is going to have to be my "telling people" week. I'd welcome any tips, especially for telling my parents/sister who I normally only communicate by email/WhatsApp, if I pick up the phone they'll know right away something's wrong. We don't communicate that much, this is going to be so hard...

Just to give some real hope to those of you with breast and ovarian cancer. Two news items over the weekend about new drugs now available for stage 4 patients showing a marked improvement over those currently in use.

Can't remember the details, but one is a more effective replacement for Kadcyla. It only works for those with specific genetic mutations, but still a fair percentage of patients. The ovarian one is for those with low-grade serous, for which there are currently v few drugs. Trialled at the Marsden?

Worth mentioning to your oncologist.

@newlydiagnosed I don't really have any advice on telling your family other than to say that you have every right to communicate in the way you feel most comfortable with. If that is text or WhatsApp then so be it. If ever there is a time to put your own needs first this is it.

@Bakewellisntjustacake, I'm so sorry to hear your diagnosis. If it's any comfort, a friend of mine had similar news when she was 30 (we're both now 39), and this year she just gave birth to a lovely baby girl using the embryos that she and her husband saved before she started chemo.

@daisypond, so sorry also to hear about your recurrence. I hope they'll get on to treating it quickly now.

@HauntedDishcloth Sorry to hear the Kadcyla is knocking you out - though maybe it's the other tablet that's to blame? I've had three Kadcylas, and so far no side effects. Ditto with the Tamoxifen, which I started in August after radiation finished. I had a day of feeling pissed off at everything for no apparent reason next week (nowhere near period), which I guess could have been a mood swing effect of the Tamox? But it could also have just been me being horrible!

I've been away from this thread for so long but wanted to check in and see how everyone was doing. Happy to say I'm NED, having come through the gamut of chemo, surgery and radiation for triple-positive BC - last November (when I was diagnosed) feels very far away! I now have hair - thick and butch looking, but hair nonetheless - and generally feel pretty good. Energy slumps sometimes, but I honestly think my three year-old has more to do with that than anything. Keeping on with the Kadcyla and Tamoxifen as preventative measures for now, but will likely start to worry a little about recurrence once the Kadcyla finishes in a few months...

@Acinonyx2, sorry to hear you're also having a rough time with the Kadcyla! It really isn't fair. What was the latest scan for?