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

[LemonDrizzle10]

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@EachandEveryone @tam23 @Tilllly @Unex @LuciaPillson and anyone else I've missed. So I won't hold out of much hope for anything less than vagueness then! Sounds familiar! Makes me feel less alone!

On another note, I'm on twice daily injections for a blood clot in the leg plus I seem to have water retention - could I do some yoga or something- I know I'm not allowed a massage as it might cause the clot to break up and move but yoga?

@Tilllly @Unex Oh yeah absolutely - my remarks were just about exact prognosis. I don't think they should be vague about everything! I often don't find oncologists particularly helpful with talking to patients or anything other than diagnosis / treatment. @Unex I'm glad you found someone to walk you through it all.

As for this business of self-advocating it seems like it's putting the burden of a lot of extra work on people who are often too weak to cope with it. And as people have said, if you don't have information you can't act on it.

There's this weird patient-centred discourse that has become fashionable where doctors say things like 'What do you feel is wrong with you?' One asked me if I felt I'd lost weight to which I testily replied that it's not a question of feelings, it's a question of the number on the scale, which she then admitted she hadn't read in my chart.... and she was one of the nicer ones too.

@LuciaPillson @Whatevershallidowithmylife

My eldest son is a doctor, he is an ED doctor, not an oncologist, but he comes to my appointments with me, and even he says he wishes he would speak more plainly! So we have no hope

I find the Lung nurses can be quite specific if I ask. A friend of mine says the only way to pin them down is to keep saying, how do you mean? Or I don't understand

@Whatevershallidowithmylife

Yes, to yoga or Pilates

I've got this on DVD. I find it useful because there are three different levels you can do, and she is very clear that you mustn't overstretch etc

@nappybrained yay for less side effects. I hated those bastard filgrastim injections!

When I’ve been to oncology appointments I often feel they have an agenda to work through and tick off things. They aren’t actively listening, just imparting information on the plan and the side effects. I counter this by going with my own list to ensure we cover what I want to discuss too. Overall I have been very lucky with kind caring doctors and nurses.

All well here. Did some gardening for MIL and am writing cards now. Chilled!
Top

@TopOfTheCliff Completely agree with you. I have frequently felt my team weren’t actively listening to me and just working through their own agenda. It’s a shame to feel like this at a time when you’re generally feeling disempowered and out of control of your life. I have had some kind and caring staff, but also had my fair share of staff who just seemed a bit burnt out, unfortunately.

I'll join the chorus of "be straight with me" that's going on! I don't know what to bloody ask - you tell me the info & then let me process it!

I'm annoyed again. My 2 days off with d&v at the beginning of term are enough to tip me into a formal stage 1 attendance review at work 🙄 My ht has apparently noted that I'm "handing off" my 1:1 to other colleagues - well, yes, I went for a wee (twice, different days). Both times he was settled in playdough & other colleagues agreed to watch him 🙄 & I have to speak to Occ Health if I want them to be able to make adjustments. I am going to make it very clear that I want a copy of what is being submitted about me & that they are NOT to decide for me that I am disabled in any way. I'm perfectly capable atm, thank you. I do not need a stranger telling me I am not.

She's pushing a bit too much though - she disclosed info about a colleague that she really shouldn't have, to illustrate a point about me. & she keeps pushing that mine is a 1:1 contract. It actually is NOT. It's still the temp contract that was put on the online portal 2 years ago & was never rectified despite me requesting it.

Eyeballs rolling out of my head 🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄 again.

I have a cardio review with their nurses on Monday afternoon. They're in for a shock if they're running late - I've no intention of sitting about in a waiting room when there is so much other stuff to do at this time of year. I'll be pulling their own "if you're late, we may not be able to see you" card. If they're more than 20 mins late then I'm off with a cheery "you can rebook for when you're running on time & it actually suits me".

Oh! @SummerCycling something has just reminded me, you mentioned ages ago about ejection fraction re. the cardio "thing" - it was 36, which seems to be pretty bad.

@lucysmam You probably know this already, but under employment law cancer is a protected characteristic, and the usual two year period before full protection kicks in doesn't apply.

Re occ health, you might find it beneficial to engage. They are supposed to act in your interests in getting reasonable adjustments in place so you can continue to work, and if your employer ignores their advice then they could be held to account, especially if they're playing hard ball with you.

Sorry, posted too soon. Meant also to say that they won't deem you incapable of anything unless you tell them you are, and only you get to see the write up of the conversation. Your employer will only be told what adjustments (if any) are required.

Hello, I was signposted here by the lovely @SewingBees (thank you so Much)

Papillary breast cancer

Have any of you had any experience of this condition?

I went for a second ultrasound scan today. My symptoms haven't been taken seriously until very recently and now things seem to be moving fast. 1st scan & biopsies were 10 days ago. Today was to scan a larger area around the nipple that they didn't do last time.

After the scan I was told that I would receive an appointment in the post for a follow up with the surgical team.

I had only just got home when someone phoned to let me know that they wanted to see me out at the end of January in the surgical clinic. Then about 10 minutes later they're called again and said that they'd received an email from the consultant and that's she wanted to see me the first week of January.

I'm now feeling very confused and I'm not sure what's happening.

They were discussing papillary breast cancer and duct "findings" on my scan between themselves while I was actually getting dressed behind the curtain.

Because I was concerned about something else it didn't really hit me till I got home and got these phone calls that that is what they actually said.

Can anyone give me any reassurance? I am absolutely sick of being treated like some sort of idiot and spoken about in the room as though I'm not there (I'm registered blind).

I didn't get chance to ask any questions and have been left feeling very confused and alone. I'm not sure why I am writing this because I know that I noone will know what is going on but I'm feeling angry about the way the appointment went today considering all the previous fuckUps they already made. Thank you.

**

Sorry, I forgot to say, Papillary breast cancer was also mentioned last appointment, apparently due to symptoms and what was seen on the scan. I was told the followup would be with the surgical team, but the surgeons wanted a larger area scanned. This was discussed on the phone last week.

Hi All,

36 year old with 2 under 5's here. Just had my diagnosis- invasive ductal carcinoma of the breast, grade 2, HER2+, large lump with axillary lymph node metastasis. They would like to start chemo asap followed by lumpectomy/mastectomy-- they will do this for certain the consultant said. Doing bone CT next week to ensure no more metastasis/other secondary conditions. I work in breast cancer research, ironically, but I am in shock I guess. Feels like I am floating and drowned under something heavy at the same time.

What now? What should I do?

@SewingBeesI did know but thank you. Maybe I'm just being difficult - I just don't want things decided for me - I'm still perfectly capable despite what their scans & meds say & it's all driving me a bit nuts. I'll happily decide on any adjustments with them though but that doesn't seem to be an option. Maybe putting it across as a "chat" & then it being like an assessment full of questions is where they went wrong.

It caught me on the back foot initially, in a week full of things that annoyed me, & my feelings haven't really changed. I still don't see how a non-clinical person, who may (or may not) have experience with my diagnosis, is going to suggest any better adjustments than me...the person who is living with this shit show & atm doesn't feel like I need any changes other than avoiding things like nappy changes while my unattached nails grow out & someone else getting their hands wet at dinner time to wipe tables so I can try & avoid an infection under what's left to grow out 🤷‍♀️

I'm going to haveto agree to it which is wrong. It should be a choice. Not agree or there will be attendance reviews. Not agree to it or we're not able to make a very simple request of your colleagues. Not agree to it so someone else decides things for you. I don't need someone else to advocate for me right now, I can do that. I can fight my own corner (and do). It should be - if you need it, this is available to you. Not, here's something else to stress you & catch you on the back foot.

Sorry, that was ranty, but I don't like the whole "they want you to do this" & being expected to just ask "how high should I jump?" thing.

@FFSNHS hi! Welcome to the thread none of us want to be on. But here we are...and they're a great bunch of folks with endless knowledge.

I can't help re your diagnosis but your username sums up my feelings soooo very well! & what you said about being spoken about while you're in the room - yes, that! 100%. It's all fucking squiffy & wrong. They should be clearer than they are, and it should be done more professionally than it is a lot of the time.

@lucysmam I appreciate that this is more stress and lack of control that you don’t need at the moment. Are you in a union? It might be helpful as you can have a rep with you at attendance meetings and it might help you to feel supported. A stage 1 meeting is usually just to see if they can put anything in place to help you and isn’t meant to be too formal or difficult. If they didn’t hold it and you were,for example, injured at work they would be in a difficult position. As an employer, I don’t find occ health very helpful, I only use them when HR are worried I will end up in a tribunal for not making reasonable adjustments. I’m a (currently off work due to cancer treatment) headteacher and my main concern would be making sure I was supporting you properly, although I do know not all heads are like that! If you say you don’t need any changes they should respect that. Hope everything settles down for you - this is the most stressful time of year in a primary school and it usually settles down a bit in January.

@mesocortical sorry you have to join us. The first thing to say is this is the worst part of the whole cancer show. Waiting endlessly for things to happen and being utterly terrified of the scan results is normal. Knowledge is power. Try to stay calm with yoga breathing or a Calm App or keeping busy with tidying/ present wrapping etc. Do Not Google! Just use Macmillan or NHS or Breast Cancer Now sites. Remember the prognosis for Breast cancer now is excellent and you will be okay! And breathe xx
Ask us anything. We’ve been there!

@Tillly That's good they found a positive pressure room for you. @TwigTheWonderKid should also have been provided with a room like that. Tillly, are you in the UK? I'm not sure the NHS has positive pressure rooms available, that's why I'm asking - are you maybe in Ireland? I was in A&E (London suburb) several times during chemo but just given a normal cubicle near other patients who were there for all various reasons, so I don't think that hospital has any or they'd have given me one or said it was already occupied.

I'm sorry to hear about the muscle and coughing hurting even more. I hope the muscle calms and stops being so painful soon.

@Zoopet Love your Christmas tree!!!

@TopOfTheCliff How wonderful to live by the coast. I'm so envious! It's great to hear your energy's returning.

@SewingBees Glad to hear you're back home following surgery.

@nappybrained and @TopOfTheCliff I was also on Filgrastim and got unbearable bone pain. Every time I breathed out I heard myself moan in pain, it was weird. I took loads of codeine before each injection after that, plus missed out day 6 of each of 7 days in the following cycles. Horrible stuff, but it did increase my neutrophils although apparently a lot of them aren't functioning cells when 'told' to grow by Filgrastim (I heard).

How many cycles of EC are you having, @nappybrained ? I had 4, and really did suffer on that combination. I know someone who worked through it, which I find incredible but she felt fine (!!!) how can we all be so different!?

@mesocortical Welcome. I'm sorry to hear your diagnosis.

I am a fellow HER2+++ (hormone negative) breast cancer patient. I also had a large (more like huge) tumour at 11cm, which weirdly didn't show looking at my breasts (does HER2 eat up all the normal breast tissue?) Like you, my lymph nodes were also cancerous (multiple). It's a horrendous shock when you hear things are so locally advanced and aggressive.

I was Grade 3 though, so a bit different to you with Grade 2. I was told HER2 is always aggressive and doesn't exist as 'slow' as Grade 1 unless it's also Hormone positive.

The time between knowing your HER2+++ status and that it's also in the lymph nodes, and starting treatment is really stressful. I had to wait about 5 weeks between diagnosis and the start of chemo (after already having waited several weeks for my initial appt).

To give you an idea, this was my treatment plan, in chronological order:
_
EC chemo x 4 cycles

Paclitaxel 12 x weekly infusions

Phesgo (trastuzumab + pertuzumab) x 18 cycles, once every 3 weeks starting with Paclitaxel

Surgery a month or so after finishing Paclitaxel - full mastectomy and full lymph node clearance levels I-III.

15 days radiotherapy to 5 areas (axilla II-IV, chest wall, etc etc ) once recovered enough from surgery.

_

I had pCR so continued with Phesgo; if I hadn't, I'd have had Kadcyla chemo/trastuzumab for a further year.

Treatment for HER2+++ hormone negative BC is brutal, but at least the targeted therapies exist now! You didn't mention trastuzumab or phesgo, but if you are HER2+++ you will need a targeted therapy.

@lucysmam

I'm sorry to hear your LVEF dropped to 36 and hope they can help it increase. It can increase is some people; in fact mine did somewhat after having dropped quickly on EC chemo. Mine didn't drop as far as the 30s, but I mean the LVEF can improve in some situations, and I hope it does for you.

Coincidentally, another member of this thread said theirs was 37 the other day, so almost exactly the same as yours.

My LVEF is now acceptable, but my GLS is too low, which is another heart echo result. Cancer meds can be so bad for our poor hearts.

I know what you mean about having to wait around hours and hours for an appointment, but if the patient is just 5 mins late they refuse to see them. I was shocked what happened to my Mum. She's elderly, rather disabled and relies on the hospital porter to wheel her to the right dept, but one time he didn't turn up for ages and ages. He finally arrived, got her to the heart echo 5 mins late and they literally refused to do her echo because she hadn't got there on time.

Good luck in the cardio review. Fingers crossed they're running on time.

@FFSNHS

Welcome to the thread.

I'm so sorry they've been talking about you as if you weren't there. I find that completely unacceptable not to mention rude and inconsiderate.

My oncologist also did that to me with the nurse in my first appointment before my treatment started. She turned to the nurse to say random things she presumably thought I was too stupid to understand, for the nurse to then tell me later (which she didn't anyway). It feels as though they think you're an idiot or just a number rather than a person. I have normal vision - I imagine it would be far worse when registered blind and they do that. Awful. It makes me so upset and angry to hear that did that to you.

About your question, unfortunately, I don't know anything about Papillary Breast Cancer (I'm a breast cancer patient but with a different subtype). I have looked it up on the Beast Cancer Now website and found this page:

https://breastcancernow.org/about-breast-cancer/diagnosis/types-of-breast-cancer/papillary-breast-cancer/

I also read on various pages while searching that said it's a very rare subtype but generally has an excellent prognosis.

Hi @SummerCycling
Yes UK

I'd never heard of them before but am 99% sure that's what they called it. Said it was about the air flow, so I was protected from infection outside the room

I'm under the Mid Yorkshire NHS trust if that's of any use

@SummerCycling hey there. Just having 4 every 2 weeks. Cannot believe second next week. Regarding working, I haven't got it in me at all. It's a huge plus if I can put together a dinner for my lot. I then plod back to couch land. Im shattered, bought a bucket but thankfully haven't had to use it! I've resorted to watching real reality shit on TV because can't make brain work hard enough!! Beauty and the geek Australia!! Oh dear oh dear oh dear...

@SummerCycling really hard treatment regimen You've been going through. Hats off. I sometimes just take a breath and think fuck how did I get here?

I made it to my daughter's school play today. It was hard but it meant the world to her. I shuffled in with my walking poles and cushions and managed to be comfortable for the full hour.

Had a swig of oramorph half way through and then promptly teared up wondering how many more school plays I'd manage to see.

@SewingBees I had a bit of a moment, hidden behind the children, at our EY nativity this week. Sobering isn't it.

There was a very funny moment where the festive duck sat herself between Mary and Joseph, smiles all round. Then Joseph casually plucks a strand of straw from the manger & proceeds to feed his donkey...who bounces round trying to catch it in her teeth 🤣

Hi all, I'm back! Sorry for the disappearance - @SewingBees I didn't make a good surgery buddy in the end, did I? How did you fare? I've only read updates diagonally so far...

So I made it back home. It was supposed to be a three-day stay in hospital, and it turned into 11. My brain/ skull base surgery took over 7 hours. I lost 2.5l of blood. There was an accidental rip in the dura that caused a cerebro-spinal fluid leak that they first tried to control with a lumbar drain, and then with another big surgery when that didn't work. 3 operating theatre visits in total
... And then my cerebro-spinal fluid grew e coli. Still unclear if that was a contaminated sample or if it's a real thing. I don't have meningitis symptoms, and they let me come home on heavy duty antibiotics with warnings to come back to hospital if I do feel rough ...

But there are good news: my surgeon is quite sure that he got the entire tumor out despite its difficult location. It turned out as expected, grade 2 chondrosarcoma with a Ki-67 of only 1-2%. So even if it regrows, it'll do so very very slowly.

Had an utterly horrendous ward experience that I'll write about another time. Seriously shocking levels of "care". Did not feel safe at all. But I'm home now, so I'll rest a bit first...