Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

That sounds hideous @EachandEveryone Im so sorry for you.

Did your cancer team tell you what to do in event of something not right during out of hours? Mine told me I had to go to A&E for help.

But Ive read on here that some people accessed a 24 hour line for chemo?

For pain that savage I'd have contemplated a 999 call, would you consider that? They have the best pain relief.

Have you got someone with you?

I’ve come off the phone and he’s prescribed codeine for now. I don’t think I’ve had it before. It’s straight how it’s unbearable on a night. I have a chemo line but I don’t want to be sat in A and e all day I’ll try the codeine and a bath, if I can cope wit the picc line and one leg far too big for the other which might not allow me to get back out of it

Glad you've had some help, hope the codeine works. Be careful in the bath in case you get woozy or wobbly.

Oh and take the phone to the bath with you in case you need to call for help 😱

Hope the codedine works Each I was always advised to ring the 24/7 chemo line immediately on any issues, sometimes they just give advice, sometimes they say come in but they have a separate treatment area to avoid A&E at ours. I was told if the problem is at 2am call at 2am. They are pretty good at knowing what could be serious and what is just annoying. But they prefer you to phone if needed and said when things go wrong it's often people who have left it thinking they don't want to bother anyone. Also had to take temp twice a day and over 38C you have to call on a digital thermometer. Hope it gets better.

If it wasn't the chemo line you called I really think you should call them now Each.

@EachandEveryone
Another one saying contact your emergency number. You're at day 3 and you should feel ropey but not be in agonising pain. Who prescribed you codeine - the emergency number or 111?

Yes after chemo it's normal to feel ropey but anything like severe pain, a temp or anything that isn't normal needs the 24/7 line straightaway to rule out something serious or get prompt treatment for it. It's very important not to delay the call as the serious things like sepsis can progress very fast. And they much prefer you call with something that turns out to be nothing, if you take temp and call straightaway that really helps avoid these things. If in doubt call. It can be worth keeping a chemo daily diary of symptoms so you know your normal pattern and it tends to repeat each cycle and then you know likely good and bad days.

@mesocortical I had a left sided mastectomy plus DIEP reconstruction 6 weeks ago. This was after chemotherapy though I’m HER2 negative. I was also nervous (ie terrified) but luckily had support from a lady I met on the chemo ward.

I was in hospital for 4 days and needed a lot of help initially at home too, although I was mobile. At hospital, they have a very straightforward process to get you up and about. There isn’t a lot of pain (I was told this but found it hard to believe), I think due to the fact the main surgical sites are numb as the nerve endings have gone. I’m not sure whether the feeling ever comes back completely. So, I basically had paracetamol and ibuprofen for the most part (except the first night I think). My DH looked after me at home for the first 2/3 weeks and I have been picking things up since then.

I was driving again at 4 weeks, and that helped me a lot. I’m still bruised and a bit sore plus much less fit than I was so I’m trying to be patient with myself now. I’m now having physiotherapy to get the left arm moving more, though I’m capable of doing a lot of normal things already. It’s a bit easier as I’m right handed I think.

I found the hardest part was the first 2 weeks as I wasn’t allowed out of the house (to keep the new “boob” warm) and had to restrict my movements a lot (to protect the vascular surgery) but I think different doctors have different protocols so this might not be yours.

Overall, I’m very glad I don’t have to have further surgery and I did want to keep a breast as a longer term goal (I appreciate not everyone is bothered by that). And I am getting better every day. My friend said it was 2/3 months before she felt normal again and I think she’s probably right.

If you have any more questions, please ask. Everyone says you’ll be fine, and you will, but it is tough mentally. Especially on the back of chemo and the future treatments too.

For hospital, if you read or use iPads etc, maybe get a stand for it to prop it up easily. Ear plugs. Lots of cushions/pillows for home (to prop to up). I had a small stool for the shower at home too.

Good luck 💐

For those of you that have been here long enough to know the lovely Mowly77 Knotsy & Pitsey have just messaged me to say her Woolly Hug blanket is now made for her address so it will be there for her husband and 5 year old DD before too long. Thanks so much to everyone who helped with that.

Hello everyone

I haven't posted for a while but have been reading your posts and thinking of you all x

@Penguinsa Thank you for the update on @Mowly77 's blanket. Such a lovely thing to do. @Mowly77 was an absolutely wonderful member of these threads and is dearly missed.

I have also been thinking a lot about @Tillly such a kind, funny and totally lovely member of these threads. She is also dearly missed.

I know I’ve been wondering a lot about people who were on here and then quietly disappeared or changed their name. One that springs to mind is the lady with the new born baby who has health anxiety on top of everything. I think she sent a photo of the baby on holiday and I never saw her again. The other one who was having treatment in Amsterdam? And I’m sure someone came up with CUP the same as me, I would love to know how she is.

the helpline weren’t concerned said she doesn’t think it’s anything to worry about and to try the codeine.

Thanks Summer Hope you are OK yourself please update us on the optimistically named Great Recovery thread whenever you feel up to it, its lovely to hear people's updates and do wonder about people. Name changing can be hard to keep on top of unless people have a theme to them or unique circumstances. And anyone who has finished treatment or is close and feels ready for life after cancer treatment please join us.

Good they aren't too concerned Each

@mesocortical

Welcome!

I am also a HER2+ ; hormone negative breast cancer patient. We are unfortunate having more or less the most aggressive type of breast cancer, but lucky in that thanks to research in the States, there are now targeted therapies that have significantly improved our chances of survival over the last 20 or so years. I'm assuming you are also unfortunately hormone negative (ER- and PR-)?

Well done getting through your chemo. I'm sorry to hear you had neutropenic sepsis. I also suffered badly on chemo.

Our treatment plans were a bit different:

I started with 4 cycles of EC chemo every 2 weeks followed by 12 weekly Paclitaxels. AFAIK EC chemo is given to people with locally advanced and/or Grade 3 cancer. Am I right in thinking yours is early stage and Grade 2? My HP part of your TCHP started with the Paclitaxel.

I didn't finish chemo but stopped early due to side effects, so well done you for carrying on all the way through; I know it can be horrific.

Our surgery is different. I had a full mastectomy plus full lymph node clearance. I didn't go for reconstruction which was lucky because I had ongoing problems with seroma (liquid building up where the breast had been) and didn't feel anywhere near well enough after months of chemo for DIEP. However, I think the majority of women do go for DIEP from what I was told. It's a very personal choice.

Our radiotherapy is the same. The Marsden told me the 1 -week version is only for low risk patients, so ER+ and HER2-neg. I was originally told it'd be 17-18 days but was actually given 15 in the end. My radiotherapy was 20 minutes zapping time lying on the bed and I found it the easiest part of the treatment plan. Blue Aveena cream along with La Roche Posay Ciclaplast Balm worked well for my skin which went a little red but was basically fine. My skin did thicken though.

Not surprised at all you couldn't work. Treatment for HER2+ ; hormone negative cancer is absolutely brutal and the treatment plan is long.

My treatment plan following surgery was for either Kadcyla or a continuation of HP aka Herceptin & Perjeta aka Phesgo. Like @demivolte I continued on Phesgo as opposed to switching to Kadcyla.

After surgery, I had DCIS in the histopathology report which the Marsden said is not cancer (I know some people say it is, but it certainly isn't invasive). That meant they viewed it as pathological complete response (pCR) and that was why I continued on Phesgo.

Nurses on my chemo unit told me (before I had surgery and might have gone on it) that they often administer Kadcyla and that people tend to find it 'kinder' than the neoadjuvant chemos.

I am a few months post treatment now and doing ok. I still have neuropathy, chest lymphoedema and problems with my short term memory. But if the treatment truly was a success then it was well worth it. Time will tell. HER2+ hormone negative, Grade 3, large tumour with lymph involvement makes me very high risk despite the pCR. I hope your situation is less advanced and Grade 2 (AFAIK HER2+ is never as slow growing as Grade 1).

xxx

@Penguinsa

Thank you x Yes, I will write on the Recovery thread too soon.

I was high risk and given the 1 week intense and told it was exactly the same for radio. ER pos and HER2 neg does not mean low risk. It just means there is no treatment they can give for the HER2 part and you will get 10 years hormone tablets. I think Mowly and Tillly both had that type but could be wrong, Mowly was definitely hormone positive.

@Penguinsa

HER2+ and hormone negative has a worse prognosis than HER2+ and ER+ when looking at the same stage and grade.

ER+ and HER2-neg have a much better prognosis than that again, if looking at the same stage and grade.

So lower risk is what I should have said, and also included the Grade and Stage I'm sorry! xxx

It's all in comparison isn't it, and the vast majority of breast cancer is Luminal A followed by Luminal B, all of which have a better prognosis than the equivalent stage and grade of HER2+ hormone negative.

But I know you have lobular as opposed to ductal, and I was talking about ductal which I should also have included.

Basically, I was just saying what I was told in radiotherapy, which was very likely oversimplified.

@Mowly77 was BRCA 2 positive.

@Tillly passed away from primary lung cancer that spread

@Penguinsa

I'm sorry, I really don't mean to upset anyone or imply that another person's cancer is low risk when it isn't.

The radiologist told me I needed 15 days because I was HER2+ and ER-negative. She said only Oestrogen positive patients are low enough risk for the 1-week radiotherapy.

There are definitely people with ER+ cancer that is Grade 3 ie aggressive, but I am not ER+ so the radiologist didn't go further into detail about Luminal B.

Its fine Summer I just get annoyed with the breast cancer is very treatable and everyone survives and lives to 100 you see on MN sometimes though the most annoying one has to be its a lifestyle disease even if genetic. It is a lot better than say 50 years ago but also the there are lots of treatments well yes there are and its good but a lot of these treatments cause lots of side effects. I am awaiting stage 4 checks so a bit on edge at the moment but mostly very glad treatment is over and life is good for the most part. Its unnerving seeing quite a few people who had cancer with me first time round now at stage 4, think Tilllly was just slightly before me. I worry as my DS still needs a lot of support. My DD is amazingly independent and not bothered for me have done what I wanted to in life for the most part.

I also meant to say for Mothra I know you said you didn't want to get appointee for your son for PIP but we have it for our son, no choice as he can't speak or write, but after a bit of faff to get it it has made it so much easier and means he has to do nothing. My DH is the appointee but I do most of the work and just hand him the phone and stay with DH after the hours wait and tell DH what to say. But means I avoid going to covid risk places when I was in year after chemo. He is also asd, very bright but was catatonic for 8 months after my cancer treatment when he couldn't walk, talk, write, see and very hard to eat, drink. Now he can eat and drink and walk again and see apart from the odd moment when his eyes are forced closed by it. It also apparently makes you appointee if they need universal credit in future, child has to be seen once at home by sight and that's it for them so stops them being distressed for most part.

My neuropathy has improved with time so hopefully yours will too and brain is back to normal, doing lots of activities that used my brain helped but back to me reminding everyone about everything. Whereas after chemo I spent half an hour wandering why there were 200 photos of a huge tabby cat on the mobile before realising it was my cat. Numbness has also improved but not gone under arm but the numbness from neuropathy can be sometimes good when they are putting cannulas in I feel almost nothing.

@Penguinsa

I completely understand what you mean. I also hate it how the general public view ALL breast cancer as the same disease; they think it's all like low grade DCIS or stage 1 grade 1 ER+. Small lumpectomy and a harmless tablet for a few years.

I find that extremely distressing so I truly didn't mean to say that other people's BC is low risk when it isn't. Minimising another person's situation and suffering is really not my intention.

@Tillly didn't have a recurrence of BC; she had a separate primary lung cancer, from what I understood of her posts here. I apologise if I got this wrong.

Stage IV is terrifying though isn't it, I lie awake every night around 4-5am dreading being told I have to go back on chemo and my prognosis is 'poor' again. It was 'poor' on my primary diagnosis.

I'm doing exercise and have done all the treatments on offer for the side effects. 1.5 years of constant highly toxic cancer infusions / injections will take time to recover from, and the neuropathy is much less than it was. My cognition is still significantly affected though, in particular memory.

I read all your posts and you sound like a truly amazing Mum to your DS and DD. It can't be easy at all with the worries about your DS. I love reading all your posts, about your cancer experience, about your swimming the places you visit, your DC xxx

Thank you Summer I know you are a lovely person and love reading your updates too. Sorry for being a bit on edge.

Hope your memory comes back - it did for me about 6 to 9 months after and what helped was researching all the medical things for DS and I (think anything that uses brain works) and also going back through the period were the fog started (chemo for me though think it was steroids rather than chemo) and working out what actually happened then. I was really badly affected by steroids and on Thursday I would have zero memory of earlier that week other than a vague awareness I had sent very long rather bizarre e-mails.

Thank you all for reassuring me about the mastectomy/reconstruction surgery. I will also be having a full axilliary clearance so was losing my mind worrying about the pain etc but feel very reassured and prepared now.

@EachandEveryone Please, please do phone the Acute Oncology Service for any pain/ unexplained symptoms, at any time of the day/night. Wishing you all the best!

@Penguinsa I have also decided to be a bit la la la about it all even though I work in cancer research haha and found just trusting the oncologist worked well for me during chemo. Thanks for the tips I am going to put them on my phone as I will forget (chemo fog is a thing clearly!) I am going to apply for UC/PIP anyway and see how it goes as my CNS said it's worth trying to.

Yes would definitely try for benefits Meso I couldn't face applying for PIP in chemo on top of everything but actually probably should have done as its probably easier to get then. I think Macmillan do a lot of it for you if you phone them. It was very slow for my son, took 6 months but they do backdate. A lot are successful at reconsideration or appeal as well if they deny it first time and it is awarded for several years so although its a battle its worth it in the end. Though obviously if circumstances change you need to let them know if they affect eligibility though that does trigger a review I believe. Hope you can get them, I think you should be able to get something at least and it does make a bit of a difference.

@SummerCycling I was told early stage 3b Grade 2 right breast DCIS and invasive both (two individual tumours in same breast) but hormone-negative with axilliary spread. Together 10cm in size. I was given a choice of TCHP and EC both, with similar outcomes. We decided on TCHP given my supposedly young age and other factors- they did warn me that it was going to be a tough treatment however didn't realise how long the treatment would be! My CNS reckons Kadcycla is what I will receive as there was residual disease on my MRI after the 5th cycle. Now I am paranoid in case I have to get Kadcycla as my TCHP was HORRENDOUS and I don't want to experience anything similar to it again! My short term memory problems have started already and I have oedema in my legs with loss of sensation but I can at least put up with it for now. Still have nausea even though my last chemo was end of April!

I also have an unexplained mass in my left breast, they did the mammogram and US and are not concerned (but I will worry, forever!).

For surgery initially a surgeon said I didn't have enough volume for DIEP reconstruction, and apparently the boob goes all wonky during rads so he didn't want to use up my last remaining volume. He gave me the option of mastectomy + implant, go through rads and then he would do DIEP (on waiting list). I then was reassigned to another surgeon who will be performing my surgery this week, who measured everything and said DIEP will be possible, so I will have mastectomy, DIEP and axilliary node clearance also. He said with DIEP the boob will only lose volume through radiation and seemed quite confident.

Yes only time will tell.

So far I have refrained from looking at research papers/ treatment outcomes about my type of cancer though I have an idea but I think it will just feed my worry about recurrence etc. I have a 2 y/o and a 5 y/o so I would like to be around for the longest time I can!

@Penguinsa The amount of times I've wanted to bang my head (and theirs) on a wall when people have told me "you'll be fine, BC is very treatable, we know 100 people who have been through this and are still alive, it's not a big deal."

Reading your posts has given me enormous strength to just get on with it now and see what happens!