Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Oh @needabitof so sorry to hear. Please remind yourself that the fact it took so long to diagnose and so many scans, gives you an indication of how small it is, whatever it is. Hang on to that - right now your outlook is really positive, even if it is cancer. I know many people now who have come though this and are doing well, of all ages, stages and types (and in different decades and countries too).

As an aside, I have just heard from my SIL whose routine mammogram recently showed something - she now has the biopsy result and it is early stage cancer (I have no technical details) and she's looking a the kind of treatment I am having. It was found early and prognosis is very good. Having seem me go though this so recently has helped I think (it also made her respond to the routine mammogram call-up really quickly...)

And @Silkieschickens I'm so sorry your kids are struggling with the news - mine were so very mater of fact that although I had considered telling the school, then it seemed completely unnecessary so I haven't.
I have always told them the absolute truth, it is cancer and I may not be very well at times when I'm having treatment but so far so good. At the time I told them I was healthy with no issues or symptoms at all so that helps. We have also been clear that even though it is gone right now there are chances it will return which is why I will continue to have treatment and so on.
Mine are far more worried about schoolwork, uni applications, friendship issues ;-) and I really don't mind.

@NewlyDiagnosed it's a big mass, I'll definitely need a mastectomy, but I suppose they are finding out if I'll need chemo first. That's what the bcn told me.

@needabitof Ah SORRY to my answer was not quite appropriate, my apologies. I hope you'll get more clarity soon.

@Bloodybridget hi there - good to hear from you (the mama of this thread for so long!) but totally understand wanting to step back.

@TopOfTheCliff of course you've been over-doing it what's new? Whenever I feel poorly I have a friend who accuses me of 'overdoing it' which makes me cross as though I've had the temerity to actually live my life.

@Silkieschickens @needabitof it's hard waiting for the final tests and staging but you're nearly there. DD16 has shades of ASD about her and has not reacted at all (no comments - nothing) over the last year. I did tell her that she would not need to worry or wonder where things were going - if something happened (ie prognosis got a lot worse) I would tell her.

@daisypond that is very disheartening when the goal posts shift such a lot.

I'm enjoying my cycle off the Kadcyla train. Stopped steroids and the cough has got a bit worse so hoping it will still calm down a bit. Coughing patients do still need to go to hospital - perhaps I should just ring a leper's bell as I go.

Welcome Ineed and so sorry for what you are going through, I am also terrified and have a big lump, they have not told me measurements but it feels like most of top half of breast and also feel pains in ribs with it, was getting hip pain but that has improved and they thought that unrelated. Mine have also said definitely surgery and they may start with chemo or radio, find out more on Friday and a bit behind you in this process.

I am horrified what is happening to DD, DS does not know but his school have been amazing, DD is a lot more worried about mocks etc than me which is fine but its another thing on top and she is mid mocks still now and the isolation was disrupting that too though school were does she have mocks , she has extra ones and some put back due to panic attacks. I am keeping her home today as she told me she took too many paracetomol in isolation yesterday, no one did anything and she asked for pastoral support and got refused. Was only twice normal amount but still.

Not told the asd one yet but he may well not react, whenever I have been in hospital in past few years, he does not react, I think he sees it like going to doctors though I always say I am going and will come back later and he seems fine with that. Waiting to see how treatment and diagnosis is before telling him.

Sorry to hear your DD is struggling and not getting support Ineed My DS has an ehcp and so everything goes via senco, he does not know yet, but school have been great but DD16 just goes via pastoral care and its quite bad, pastoral care are fine but teachers just treat her as a child who needs no support, vast majority are fine but a couple are so insensitive.

@Silkieschickens that's so bad, your poor daughter. Mine is doing mocks too, there's no way this can't affect them. I'm waiting to get a response from her school, also I think I'll ring the bcn for advice.
It sounds like we are on the same path. Good luck for Friday.

Thanks very much Ineed I hope you can get help for your daughter too. I am not getting very far atm but I am not taking no proper support for an answer, she is under pastoral care but it does not seem to flag up, so when she asked to see pastoral care yesterday after taking too much medicine they said no she must stay in isolation and speak to noone. She also told me they would put her in it again today but I am not letting her back until I think she will be safe there. Trying to get her moved to SN register for emotional needs and under senco as that will flag and advice will be sought.

@needabitof sorry you have joined us and are going through the agony of waiting for results. It is so hard when you don't have all the information you need to deal with the situation. Keep busy! We understand.

@Acinonyx2 Im trying hard to sit still today. I forgot to take it easy yesterday and did a 25 mile bike ride then yoga, and now my arm and side are really sore. I am going to have to take it easy for a few days. Nothing is swollen but I feel out of sorts. I have cancelled today's bike ride and may cancel a gym class too. It's so annoying when I was getting strong. I am also chasing the nurses about my 12 month mammogram as it should be this month. grumble grumble mutter mutter. Do you think the cough is Kadcycla related? I guess that might preclude you going back on it after your month off.

Love to all from a grumpy Top tied to the sofa. xx

@TopOfTheCliff it's funny (sort of...) how health/fitness see-saws these days. I was feeling relatively great last week after missing chemo but have got steadily more tired and more aches and pains. Even wondered if it might be my third jab last week. I went for a long walk yesterday which was great but then I was totally knocked out and just dozed rest off the rest of day. I guess sometimes we do just need to reign ourselves in a bit (but that's for US to decide - not well-meaning others...).

Cough is a combination of rads and Kadcyla which are known to escalate each other. I don't know how much cough will be seen as a problem - it can escalate to serious pneumonitis very fast. In hind sight, it was a mistake to start Kadcyla before rads (as the rads lady pointed out at the time...) but it's done now.

I feel your grumpiness. I am also really antsy to just get on with my life and stop flopping about, one step forward two steps back. I've booked a few 'treats' - I never really got into shielding although now having some lung damage makes me a bit more cautious. Work is slow too and I'm keen to get some alternative projects off the ground - if I can just summon the sustained energy.

Welcome @needabitof sorry you find yourself here.

I was in the breast unit yesterday for my pre-op and despite tomorrow being my anniversary of my breast cancer being diagnosed, I was remarkably calm. Nothing like me visiting the gynae waiting room back in September.
Pre-op went very well except for having to park miles from the breast unit and March from one end of the hospital to the other and a long wait at the bloods clinic. Understatement of the year from the phlebotomist- “It’s difficult to get blood from you isn’t it” 13 rounds of chemo will do that to you.

Having to take it easy today after all that yomping about, I hate not having any energy or strength any more.

Hi, I hope you don't mind me joining. I don't have a diagnosis of cancer but I am waiting on biopsy results. I'm extremely anxious. Found a lump and had mammogram and ultrasound and biopsies last week. Very stressed out as doctor said they were "very worrying results", calicifications showed on mammogram and I have since seen my clinical notes which gave my mammogram score of M5. Feel like I'm on an emotional rollercoaster and torn between thinking that surely it can't be cancer to being absolutely convinced it is.
Biopsy results tomorrow so not long to go now.

Morning @3beforeme.
It's such a worrying time isn't it. The waiting, it's torture. I have to wait a week for my scan results but I'm almost scared to find out.
I hope you get good news from your test results tomorrow.
Keep posting.

This is bit left field - but I see someone has resurrected a thread on gum disease and I'm very concerned about that. Since I started chemo, I switched to a soft tooth brush and stopped using my water pick or flossing. This was advised due to likelihood of bleeding gums and infection risk.

Now on Kadcyla the bleeding is worse as my platelets are so low. But I'm really worried about the underlying state of my unpicked/flossed gums. On my treatment break I'm using an electric toothbrush - my teeth feel cleaner but they do bleed quite a bit.

What is everyone else on chemo doing - just business as usual or reduced like me? Are you bleeding a lot and just persevering or not? I daren't go to a hygienist - but I had the recommended dental check before chemo.

About 20 years ago I had the deep clean regime for my gums and it worked well but I'm anxious not to go down that road again.

Welcome 3beforeme and sorry you are also waiting too, its hard. I am also waiting for Friday but already been told its cancer and will need surgery definitely and possibly chemo and radio. I also have a bit of tooth turning black so thats another thing to add to my fun things to do list. Plus can only get private for dentistry here.

@Silkieschickens I would see your dentist asap before treatment kicks off - they'll probably advise you too anyway. I also have a private dentist - couldn't get seen in time otherwise but upside is treatment is better. quicker and more flexible - they really worked to accommodate me in time.

Hi to all newly joined & everyone else! I haven't posted about the state of my hair recently so here's an update: the good news is it's grown back enough to have a style...the bad news is that style is Simon from The Inbetweeners

I've actually taken to wearing my favourite chemo beanie as it's so difficult to deal with: curly at the back but sticking up straight all directions elsewhere. Not that I'm moaning about having hair again! I might try a mini curling wand or straightener to get it at least doing the same thing all over but I don't really want to damage it after it's got this far.

Onto teeth @Acinonyx2, yes, I have the same problem & have been worrying about my dental implant right at the front. I've stopped flossing too and use a soft brush when it's bad. I don't want to see anyone - when I saw the hygienist before chemo she really went to town! So I'm just going to muddle through I suppose. Is there a dentist on the other thread at all to ask for advice without getting guilt-tripped?

@HauntedDishcloth yes seems churlish to complain about one's hair but mine is such a granny perm just now - was straight now very unruly curls straight up and out. Mustn't cut it - I'm aiming for a Helen Mirren bob only wish I could channel the rest of her to go with it. I have thought about straightening it.

Other thread was oldish I shall keep an eye out as there was an actual dentist on it a year or two back.

@MrsPnut have you had your op?

My hair resembles someone who has put their wet finger in a plug socket but with slightly less style.

My teeth are also crumbling away, they are much more sensitive now and I have a check up booked for January. I’m using my electric toothbrush and have been all the way through.
DD2 had a positive LFT this morning so we had a family trip for a PCR, just waiting for results. I have surgery in two weeks so DD is sticking to her bedroom, no hardship really for a teenager.

@MrsPnut well that would happen wouldn't it. We're surrounded by positive families here just hoping dd16's natural anti-social tendencies will see us through. She could definitely do 2 weeks (indefinitely?) in her room if we moved all the tech up there.

I'm going to book a check up with my very nice (but expensive) dentist and just spill the whole sorry story.

Yes definitely need to book dentist soon, dreading the bill but needs doing.

Sorry to hear your DD might have covid MrsPnut Hope you avoid it.

@Silkieschickens Thanks.

@Acinonyx2 Of course it would happen, you know what we are like!
DD has two rooms actually, her bedroom and a gaming room/study with her tech in and an extra desk for art and homework. She's sleeping mostly though at the moment and I am trying to work out how long she is likely to be contagious for. We got the PCR results back and it is just her that is positive. I'm triple jabbed and recently did the cancer study antibody test (but not had my results back), DH has been double jabbed for some time and is due his booster in a few weeks.

Acinonyx2 MrsPnut ! went to the dentist last week, my teeth have been really sensitive lately, probably chemo, but I knew that there were some fillings needed.
Oncologist said not to have anything intrusive done unless absolutely necessary, to stop my PARP two weeks before hand and have bloods taken before and after ! I was quite happy to inform dentist of this as I am dental phobic! She patched up one tooth, told me my gums were not good and there was some bone loss due to periodontal disease