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

[LemonDrizzle10]

@tilllly and Daisy.

Yes Meso I only have la-la-la or complete panic modes so tend to go la-la-la cancer what cancer so can enjoy life again. I tend not to think about it now unless I have a check up or someone having cancer reminds me. I was a complete wreck in treatment anxiety wise. Swimming helps so much. Though my la-la-la does go too far at times, I have not had follow up checks since 2021, eek. Other than stage 4 symptoms which were clear.

So sorry your kids are so little Meso Re unexplained lump would they do a biopsy or MRI, our hospital is very inflexible on these things and says you have to go private but sometimes if you ask enough times they back down.

The treatment is quite brutal at times, well chemo and steroids were for me. I had a choice of chemos and went with Pax and a shorter one of 12 weeks as oncologist didn't think success rate would be much different. Things do improve after treatment finishes, well chemo effects can peak 3 months after they told me but after that there's a gradual improvement. But its best to do things to support that like exercising 3 to 5 hours a week cuts reoccurrence risk by 50%, will likely need to build up gradually but it really helps mental health too. I do swimming and swim around 3 miles a week now over 3 visits, also gardening I always count too and do around 5 hours a week now for all exercise combined. Days out are good for mental health too. Swimming a nicer pool than the public one if you can afford it is good as you get the nice sauna, spa, jacuzzi which makes it more pleasant plus a lane to yourself or pool sometimes. I do one at the Holiday Inn and that's £58 a month so not too bad. I used to do David Lloyd when working and smaller kids but that is pricey but good for kids activities and clubs and lovely outdoor and indoor pools and spas. Life does get a lot better, never back to normal, and always you know it could just come back one day, but you get to do all the nice things again like holidays, days out, see kids do things and if you do the exercise I feel quite fit and occasionally get anxious and /or ranty (which never did pre chemo) but it passes in a couple of hours and distraction helps.

@Penguinsa Thanks, it would be great if my memory recovered at least partially. I was on chemo and targeted therapies for 1.5 years, so it's a long time and plenty of opportunity for cytokines to damage my brain and body along with the rest of the toxic content of the actual stuff.

Good to hear you've noticed an improvement. Interesting the steroids affected you that way. I have a history of extreme steroid sensitivity so apart from Dex 8mg during EC chemo for 4 days, they tried to avoid them.

@mesocortical we are actually fairly similar! I also had two invasive cancerous tumours each of >5cm mixed in with some high grade DCIS. And multiple cancerous lymph nodes. Stage 3c T3-N3-M0. Being 3b, were you maybe T3-N2-M0?

Interesting you were offered the choice EC chemo vs TCHP. AFAIK they really want people with Grade 3 Her2+ on EC chemo, but with Grade 2 you were allowed the choice. I also found chemo truly and utterly horrific.

Funnily enough, I also had around 1cm residual disease showing on my post neoadjuvant MRI done about 5 days before surgery. Also the CT done just before my final chemo (I stopped chemo early) showed 2.5cm. Yet no IDC was found in histopathology in the breast or nodes, only DCIS. I asked my oncologist who said they don't know what that was. I had loads of fibrosis in the histopathology report, about 4.5cm - 5cm x 2 places. I worry they missed IDC in histopathology, but a research nurse who I trust told me he's great at his job, so I just have to trust them.

Unlike you, I have spent hundreds of hours reading research papers and treatment outcomes. I have more or less stopped now, but was almost obsessive for ages trying to learn as much as I could. I found the info from the CNS often wrong (for example, breast cancer doesn't go to the brain, etc etc ) or patronising (such as a booklet on DCIS with pictures of older ladies doing hobby like stuff in their kitchen or garden). She never did give me any info whatsoever on HER2 and I doubt she knew anything. They were totally focussed on ER+ because that's what they see far more of.

I also have neoplasms in an organ that are pre-malignant, so I can relate to your worry about your other breast. It's so stressful

I remember my surgeon checking I had enough skin for DIEP. I was 8.5 stone on diagnosis, and the surgeon was happy I had enough on my tummy and also my back. I'm over 10 stone now (!) she wouldn't have had to bother checking now.

Your DC are very little. Mine were quite a bit older than yours, but not through school or uni / whatever yet. Here's to us both surviving this horror show xxx

@mesocortical I had the same neoadjuvant chemotherapy as you I think (docetaxel, carboplatin and phesgo, it wasn't described to me as TCHP but is the same I think). I finished in February. It took a bit of time but I am generally feeling a lot better these days, just with a bit of tiredness and some digestive issues which I think phesgo is contributing to. Some side effects seemed to get worse before they got better, but overall I feel so much better than I did a few months ago.

It must have been very difficult going through chemo with such young children, I have one 4yo and found that challenging enough but can imagine it being a lot harder with a toddler as well. I found surgery much easier than chemo.

All the best for your surgery x

Good to hear from you @SummerCycling , I hope you are doing okay x

@lucysmam @demivolte I'm ok thank you, really think it was the naan bread that caused the diarrhoea as I was fine after taking some relief meds. Then I did a google and apparently shouldn't eat spicy foods if you have paclitaxel so lesson learned.

Oh @catmomof3 I didn't realise you were having Paclitaxel - I did too. Although I ate everything in sight 🙈

@lucysmam Yeah I'm having that along with carboplatin for 6 cycles (4th is on friday) then moving to cisplatin for 5 weeks to go alongside my radiation. Not looking forward to going from 3 hours in the chemo unit to 9 hours. But I'm staying away from spicy foods now for a while, can't be going through what I went through on Saturday night again.

Hi Ladies,
Question for those on Zoladex & an AI, or just an AI for high risk primary breast cancer...
I've persevered with Zoladex and Exemestane for 3 years now. I have had a lot of bone pain and joint issues, as well as carpal tunnel and plantar fascitis, over that time. I found one brand of Exemestane that I tolerated better (Zentiva), with a lot less pain. But it looks like that's not working any more, my carpal tunnel syndrome is back and my hips are soooo painful.
So what are my options? What's the next most effective AI for premenopausal women?
I only have one friend who down-traded from Zoladex and Exemestane to Tamoxifen only, and she's now Stage 4. So I'm petrified - I don't want to increase recurrence risk, but I'm in too much pain to carry on like this indefinitely.

KentishMama I'm high risk primary breast cancer and my oncologist advised to stay on Tamoxifen, it does have a slightly lower success rate maybe 1% or 2% lower but its normally tolerated much better for side effects. I get minimal bone pain and can exercise 5 hours a week easily on it and no real menopause systems apart from can be moody for an hour or so then passes. But no hot flushes, no bone pain, feel super fit and exercise can halve reoccurence risk if do 3 to 5 hours a week so if pain stops that its counterproductive. At the end of the day you can take everything going and still go to stage 4 though it is difficult. And after 5 years Tamoxifen increases ovarian cancer risk so advised to change. Get oncologist advice ideally but that's what mine said, I had 3 hormonal breast cancers so kind of expecting it back whatever I do but in theory Tamoxifen for me gives a 13% more chance of surviving 15 years. Some women do struggle with it but I have found it OK after first month. I do get insomnia but anti histamines can help me with that. Not easy but would seek advice then make decision and get on with it. There is a balance with quality of life as well.

One lady who got stage 4 on here after high risk primary was in Germany and had Tamoxifen for 19 years before she got stage 4 pancreatic, she has sadly died but believed the Tamoxifen gave her those 19 years which meant her 1 and 2 year old at diagnosis reached adulthood.

The other thing is have you been scanned re pain like either a CT and/or Dexa scan, again ask oncologist ideally.

There's this study on it, it is something I am not sure about either, need a crystal ball and ability to go back and forth in time and change decision. I was pre menopause before chemo.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)61074-1/fulltext#:~:text=Aromatase%20inhibitors%20reduce%20recurrence%20rates%20by%20about%2030%25,about%2040%25%20%28proportionately%29%20compared%20with%20no%20endocrine%20treatment.

@Penguinsa Huge thank-you! I'll read the article in a minute, but that's exactly what I've been trying to wrap my head around. The pain is preventing me from exercising and I've put on heaps of weight, which I know increases risk, so it probably reduces the extra benefit from the Z&E combo to nothing.

I've talked to my oncologist multiple times over the last three years, and she told me to get on with it. "It's up to you if you want to take something less effective instead". Literally her words! Then referred me to another specialist to get injections in my wrists to reduce the carpal tunnel syndrome symptoms. It's just too shit.

I've decided to find a new oncologist anyway after the utterly shit way that she behaved when my second primary was discovered. But that's another story. So I think my next step is to call my insurance to check if there are any issues, and then find myself a new onco and make some med changes...

Sounds like it would be worth changing oncologist Kentish so much better to have someone who understands and is kind, mine is lovely, first surgeon was awful and once he was changed it was so much better. They all use their best guess and there's an element of luck involved but I prefer when they consider more than the one piece of data and consider quality of life as well.

I do Tamoxifen plus with cancer treatment I went out of normal BMI for first time ever and put on 14kgs and its intense losing that but getting back to a normal BMI (upper end is fine and I think might be the ideal from a health point of view) and exercising 3 to 5 hours a week cuts risk around 50%. I turned down 1 med abeb.... which has bad side effects as I was worried wouldn't be well enough to exercise and have poor quality of life, its effectiveness is a third and the evidence looked patchy to me and known for upset stomachs. It was also time when my son had just gone into hospital an hour and a half away and he was more important than me. Its a bit of an unknown but I've gone for the normal BMI and exercise I do 5 hours a week including swimming about 3 miles a week and also count walks an gardening. I feel so much better mentally and physically for that and look much better than I did just after chemo. I have 1kg left to go and 13kg down. You need to go for what works for you and find the right balance between quality and quantity of life. I do strongly recommend exercise especially swimming if you enjoy that, a nicer private pool if finances permit and getting to a normal BMI is good as well. I don't get hot flushes, minimal aches and pains, feel fairly cheerful, that really works for me. The med combination does need to be whatever you feel comfortable with. And be kind with yourself with the exercise and weight loss - gradual and building up works well and the road may be bumpy. I found exercise pretty easy. The weight I had to go down to 1200 calories a day but I do eat back any exercise and that loses me a pound per week but everyone will be different. I am kind of resigned to going to stage 4 at some stage but want a reasonable quality of life before then, I don't want to live years longer in agony. I do feel older than pre cancer treatment due to chemo effects but maybe feel my age now but I think the AIs can make you feel like 80.

Had a lumpectomy last Thursday and have finally caved and taken off the compression socks as one was cutting a line into my leg and v. uncomfortable.
I know I was told to wear them for 2 weeks but is that really necessary?
Tried ringing the breast care nurse but nobody is picking up.

@Zoopet if you are active and can do some good toe raises while lying in bed or walk up and down stairs a few times then your clot risk will be lower. I took my stockings off!

So sorry you got cancer so young Deliah and this is exactly what the thread is for so please don't apologise. That sounds like its going to be OK to me if they are saying no cancer found but maybe they want to see what is occurring. Someone else, maybe like Top may know better than me but the no cancer is definitely a good thing and they wouldn't say that if they weren't confident.

I think re the DVT stockings its a while back but was told to wear them until I was mobile I think but mobile can be just lying in an arm chair moving your leg up and down for say 20 minutes in a day, doesn't mean walking miles or running marathons. But just mobile enough to reduce blood clot risk.

@Zoopet I also took my stockings off as soon as I got home, after 4 days in hospital following my ovarian cancer surgery, and I've had recurrent DVTs. I react to the material they are made from and when I'd worn them previously for the full 2 weeks my entire lower legs broke out in infected eczema which was so itchy and took weeks to heal. Just make sure you have stand up and have a little walk to the kitchen every hour or so during the day and do the stairs like Top says. I thought the advice for 2 weeks was for people who were bedbound but if you're up and about around the house you will reduce your clot risk.

I had a lumpectomy in November and they did t say to me to wear them two weeks. I think it was 3 days?!

Will check with my child who will remember!

Yes it was 3 days. It don't remember much in general but I couldn't wait to get them off!

Spoke to the Breast Care nurse and apparently I'm high risk because of all the chemo sessions so we've compromised on me wearing them in bed at night.
Thanks for all your replies. X

I’m having trouble as well my leg is so big and painful. I can’t sleep on it. I’m really feeling the chemo and it’s only been 4 days. I don’t know how I’m going to get through it

@EachandEveryone How are you this morning? What's the leg doing now? Best call for medical help if still as painful; what's causing the swelling? 🌷🌺

The cancer is in my lymph nodes so they said that. Have to be vigilant as they are deep. I have a blood test today so im thinking to ask if its worth going to the drop in centre. Although i did see the nurse who measured me for stockings last week. The cancer has grown but not spread.