Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Ooh @Florabritannica we celebrate all gains here. Hooray for the shrinking tumour!

DH went off for a bike ride today so I went for morning coffee with friends then yoga after lunch. I also stripped the beds and washed the bedding and remade the beds. Go me! My energy seems to be creeping up on the Zoe diet.

Thanks all! It’s certainly good to know that this vile treatment is doing what it’s supposed to.

Urgh! Why on Earth do various departments not communicate with each other.

I've just opened today's post. Two appointment letters in there. One clashes with my oncologist appointment, which is in the opposite direction anyway. They've literally booked for the exact same time ffs! And the other is for the day after for bloods at the chemo suite.

Why on Earth they can't communicate & see that, actually, I'm in x location on Thurs so they clash. & they've booked bloods on Friday anyway, so we'll book that one then, is beyond me.

So now I need to work out who, or what, to re-arrange. The CT to the Friday would be preferable, if it's earlier, so I don't wind up stuck on public transport for an hour or more for what should be a twenty minute or so journey home.

My eyes are proper rollllling out of my head right now 🙄🙄🙄🙄

I am waiting for a response to my email which had 2 sides of A4 paper listing the errors and corrections. If they don't correct my end of treatment summary I will forward my notes to PALS because apart from my GP needing accurate documentation, psychologically, I really need the summary to be correct. One of the non-cancer related errors was a diagnosis that is actually the opposite of my correct diagnosis, so the medication is also the opposite. The opposite medication would kill me in days, so it matters.

I met the nurse who wrote it, and I agree with the locum surgeon that the nurse is a lovely person. But that's not really the point. My own surgeon and two of the CNS nurses are fantastic and like things done correctly, so I don't feel alone in this. I think my oncologist likes things correct too, but I think OAFU is under surgery?

I think OAFU aren't interested in my case because I won't be on oestrogen blockers, which I think is the main purpose of their existence. Everyone on oestrogen blockers gets an OAFU treatment plan, but I won't be getting that. I'm fine with that, but the summary should still be correct and I should still get proper access to monitoring of any recurrence.

@lucysmam

Sorry you also had various errors in your summaries. Yes, I agree, it makes you wonder what else happens when the documents are so full of mistakes - and in your case they clearly weren't even bothered about them. 🙄

Did they listen to you in the end about your question regarding surgery? I read on one of these thread pages you were thinking about that.

@Florabritannica

That's brilliant news your tumour has shrunk significantly. So lovely to hear.

Plus, you're relatively early on in chemo I think aren't you? You haven't even started Paclitaxel yet. I can't remember, what type of cancer is it? Is it neoadjuvant chemo you're having?

@isaxx

Well done getting your cancer covered privately! Clever move. Less waiting time for appointments and scans etc is actually a very big deal I think. I think a significant amount of my anxiety has been caused by long waits.

Thanks for your tips about checking. I think you are spot on and I'm thinking about recording future appointments too now.

@lucysmam

That is extremely annoying!!! I had that a couple of times too, because my treatment was done by two hospitals which didn't seem to want to communicate with each other.

I found phoning the dept worked though, and they found me appointments that were ok.

Can you work out what would work best for you and your bus journeys, then see if they can fit your appointments to suit that?

@TopOfTheCliff

That's brilliant news about having more energy on the Zoe diet!

Sounds like you had a lovely day.

I got my Zoe results today and they were as expected but more extreme. I have Bad sugar response, poor fat response good diet and excellent gut biome. My problem is I am horribly overweight thanks to chemo and taking no exercise currently. There is nowhere on the forms to explain that I am having cancer treatment so I look like a lazy lardarse. I am a LL but for a good reason!
Off to the physio now to see if he can fix my shoulder. I’m fed up of waiting for the bone scan so I’m cracking on.

Hopsital appointments are the devils work. My SIL works in our local hospital sending them out and the conditions they have to work in and the demands in them are appalling. She is retiring at New Year and they will be even worse without her. Imagine getting two days notice that a clinic won’t be happening and having to let all the patients know and reschedule them when you have no capacity. Then getting an earful from frustrated patients because this keeps happening. And managers on your case for breaching limits as there aren’t enough clinics running which is beyond your control. And worrying about the patients that need to be seen and you can’t fit them in. It’s a thankless task!

I’m all itchy from the groin radio. I feel like I have thrush could that be it? I might have to go to boots, it’s driving me mad. Only two more treatments left. I don’t know what to think. I haven’t heard anything about immunotherapy yet I wonder how they tell you?

Hello everyone, I posted a question about the oncotype test as a new topic but got no replies, I wonder whether any of you can help. Basically I am having NHS treatment for breast cancer and don’t qualify for the oncotype test because my risk score is low, but I would like to pay for it (or the Endopredict test). Has anyone done that, or does anyone know how you go about arranging it? I don't have a medical oncologist to discuss it with as the NHS plan post surgery is straight to radio plus hormone therapy. Am I going to have to go for a private consultation with an oncologist to get the test ordered at all? Any experience would be really helpful (not least as the clock is ticking now for the radio).

@Hiris I’m sorry you haven’t had a reply. Both my cancers were aggressive grade 3 IDC TPBC/ TNBC I went straight to chemotherapy before surgery. I have no experience of the Oncotype test. Best to phone the surgeons secretary and ask her I guess.
Good luck x

Hi Hiris I was a bit above the risk for a free Predict test but NHS paid for as an exception, if they hadn't my understanding was they could order and you pay them, think it was £3,000 ish but check with your team. Took about 3 weeks to come back.

Sorry it was prosigna they did, think if you wanted a different one it maybe private only but ask them. It might have been £2k rather than £3k but that sort of money. Results were identical to predict breast in terms of risk for me with lobular.

Also check if you did it and it came back high risk would they offer chemo, it's likely not to be high risk but can happen.

@TopOfTheCliff it's so frustrating - all round. You'd think systems would be able to communicate & ping a "no, already booked elsewhere" error message (or something like that).

I'm going to ring my oncologists secretary in the morning and see if she'd prefer the CT or paperwork first. Then ring the chemo suite and see if I can book bloods for when the CT is, save myself an extra trip (and fiver) for two short ish jobs.

Hi all.
It's been quite a day.
I decided I would be happiest going on my own and I am comfortable with that. I didn't regret it.

I used the otter app which was really useful, but stupidly forgot to restart the recording after half an hour so I missed a bit in the middle.

So the news is that the bowel cancer is at happily just limited to the bowel and there's no evidence of it having actually invaded any other organs or lymph nodes etc so that's nice. Unfortunately its position and size means they don't think they can start off with an operation and I will need some chemo first to try to shrink it a bit before surgery. Is there anyone on the thread who has had a similar pathway to that?

I am still feeling perfectly fit and healthy aside from tiredness which is normal. I have told my family and it's a bit surreal to have them all worrying when I feel fine.

Thank you Top and Silkie 🙂

Glad its not gone beyond the bowel Hoh I am breast cancer and chemo after 2 operations but its relatively common to have chemo first to shrink things, hopefully someone will have experience of that on here. Do you know what chemo yet? There's masses of chemo experience on here.

@Hiris Be assured that if your MDT haven't recommended Oncotype DX, you don't meet the requirements and/or they don't deem you a sufficient risk. I had a multifocal grade 3, 50mm tumour, ER+, HER2- with no lymph node involvement. Oncotyping is only offered to women with ER+, HER2- have 0-3 lymph node involvement and the tumour is less than 50mm. (Had mine been 1mm bigger, I would automatically been offered chemo without testing.).

What are you cancer stats?

My score came back crazy high, something that made more sense today when I found out that not only do I have the BRCA1 mutation, I have the BRCA2 mutation too. A double whammy.

This is a lot to take in.

I need the rage room. I’m so f-ing sick of feeling poorly. 9 months since this shit show started…I felt perfectly well when diagnosed. 6 months of chemo, op recovery time and a month of radio due to start. We had opportunity of a week’s holiday this week so taken kids out of school and booked centre parks. Cue sickness and diarrhoea. Literally found myself being sick at the guest services this morning whilst people were having their morning Starbucks. Kids and husband dragged out of the swimming pool and had to watch me be seen to and driven back to chalet. The rest of my day spent in bed. My poor, poor girls. I just wanted one week off from this crap.
Rant over. Sorry

I’m so sorry @Whattodotomorrow That’s really shit and the rage room is yours.

That sounds really hard for you doublec, I’m sorry. What is your treatment plan now?

I know I don’t meet the NHS criteria for the Oncotype because I am deemed low risk (ER+, HER-, node negative, small grade 2 tumour and the NPI comes out at 3.2, where 3.4 is the lower cut off for an NHS test). But various studies have shown that there is a relatively small but significant number of women who come out as low clinical risk on eg NPI or Predict, but who actually are at high risk of recurrence (and would benefit from chemo which wouldn’t otherwise be offered) when the individual genomic testing is done - the NHS eligibility is of course based on a cost benefit analysis, but leaving aside the cost I think why would you not have it done if you can, it to have that specific personal information, if that makes sense?

@doublec I was diagnosed with BRAC1 after genetic testing. I also had three tumours in both breasts. The surgeon said I was a rare ish case (not a radish as auto predict wanted to put!)
I’m nearly out the other side (if that’s possible?) and it’s a hard slog. Have they suggested a masectomy? If you want to chat I’m here.

@Whattodotomorrow - sorry you are feeling so poorly. X

I’m going ok but tired. Skin is sore from the radiotherapy. Started walking longer and stretching. Going to try and add some light weights to that today. Need to lose a lot of weight - aiming for 10kg. Eating between 12 noon and 7pm and upping my salad levels - no cake! Hair is growing well on the biotin. Parents are planning their trip to see us at Christmas so I’ve got that to look forward to. Friend has just been diagnosed with precancerous cells in breast so she’s having that dealt with next week. Worried about my mum in the UK. Lots of weird dreams.

Sorry that there are so many issues with appointment booking. It really puts extra pressure on such a difficult situation.

@TopOfTheCliff its really hard being patient, especially hard because you been dealing with all of this for such a long time. But you are nearly there now!

Saw my surgeon yesterday for review post surgery and he was pleased how I’ve healed. Now dealing with health insurance claims and Medicare. The system in Australia is very confusing for claims.

Be lucky! X

Oh @Whattodotomorrow that is so unfair! Let’s hope it’s just a quick burst of norovirus you get over without spreading it to the family. Take it easy and keep hydrated xx

@FairyWren7 you are right it’s been a long old slog. I am planning my exit strategy to escape Cancerland. I’ve got a month till I finish the oral chemo then the vegan retreat to sort my head out. After that two months of healthy eating and boot camp to get me in shape for the hip replacement and scar revision then rehab for as long as it takes. I am thinking this month I will try to fix my shoulder impingement and start doing some weights. The young lads in the gym I go to for physio were lovely today, I have mythical status as The One that had Cancer Twice so they are very kind to me.
I do like to have a plan!

One ridiculous thing happened yesterday. I was at yoga standing on one leg being a tree as you do and I sprained my midfoot. It’s very sore and I had to use crutches this morning. I am too heavy for my foot! Gah…

Good luck to those that need it
Top

@Whattodotomorrow sorry to hear that. It is not your fault but I understand the feeling that you are spoiling things for your family in addition to having a bad time yourself. It just makes it so much worse. I haven't had a holiday in ages. I still don't dare book anything precisely because I fear something will go wrong. It sounds though like you have been through the worst of your treatment already, so maybe things will slowly improve. The key word being slowly. This is such a slog.
@TopOfTheCliff agree about having a plan. It really helps. I really need a plan at the moment.

Cancer treatment seemingly over but dealing with a whole host of consequences as well as not bouncing back energy wise in the way that I thought I would. My arm lymphedema is getting worse which is really depressing. My swelling pattern is apparently 'unusual' (lucky me to be always baffling the professionals). I also have an appointment about nipple reconstruction but am finding it difficult to care. I want the swelling to be dealt with first and to feel better. But I am trying not to drag myself down and trying to go to each appointment as it comes.

On one of the more minor side effects I am coping with, my eyes are watering like from a tap. I look like I am flooding with tears as I walk down the street, having to keep wiping my eyes when I read to avoid blurriness, etc. Does anyone know when this stops?

@HohiyiKozbevi I have ovarian cancer however it's quite common in OC to have 3 rounds of chemo first before surgery. I ended up having 4 rounds of chemo before surgery due to delays.
It felt fine and my recovery was as expected and chemo restarted about a month after surgery. Good luck with your treatment x