Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

Well my appointment with oncology is the 7th so I expect it’s the same one. If it was female cancers he specialised in I would feel better as I’d understand more but stomach? Liver? Oesophageal? They all sound so bloody hard to treat and with poor outcomes . I look and feel bloody fine. It’s like waiting sentencing isn’t it?

Has anyone come across Joining The Dots? I have been referred by my GPS surgery. I need help with things like changing sheets and putting the washing on. Dd2 used to do it but she’s moved out. Will these people help or are they for cup of tea and a chat type of thing? I’ve Googled but not got much info.

Oh @dotty I’m very sorry about your puss cat, it’s not trivial at all. Ironically my most beloved cat, my ginger floof, died after a horrible combination of kidney disease and then mammary cancer a few years ago. I’m still upset! Couldn’t believe even my cat had breast cancer… I’ve got two more now. One is 13+ & I’m terrified of something happening to him. Although he’s happy enough!

Hi @toughie commiserations about finding yourself here. You’re not stupid for not noticing. My first breast cancer was 11 years ago … I missed my annual mammogram because my life was chaotic at the time, and I didn’t check my breasts very well myself. I felt pretty stupid when I finally did find a lump (turned out there were 3, one was huge) but now but I’ve forgiven myself now. as you should.

As for hair, I had a different taxol recently, Paclitaxel. So I’m not sure about your taxol but I think the side effects are all pretty similar. I actually kept my hair for a really long time weirdly and I had 17 (but at 75% dose). I was definitely balding and it was patchy so I cut it shorter and shorter. But I could still wear scarves etc with a bit of hair showing. I’m 8 weeks out from taxols now and it’s growing back but very weirdly and thin but my new treatment causes hair thinning so that’s to be expected. It’s sticking up crazily though; some bits are grey; some bits as wispy; I look deranged!

@Makemineadecafplease @Fantasea anxiety is the worst. I totally understand. Every ache pain or symptom sets off a chain of anxious thoughts. I started getting panic attacks so I’ve got a prescription for diazepam which is helpful as just knowing it’s there can often help if my thoughts start spiralling. Beta blockers sound really interesting and potentially better, as less tolerance issues. But I’m on sertraline everyday which is an SSRI that is specifically supposed to help anxiety. I do think it is helping somewhat just on an underlying level. It’s not a magic bullet for big things like scanxiety or my really big fears. But I’m taking all the help I can get.

and if you can get any talking therapy that could be worth looking into @Makemineadecafplease ? I know @Fantasea is an old hand! But it can be arranged for free through Macmillan ans usually your hospital

Thanks @mowly77 , it’s surprising how reassuring it is to hear someone else’s experience. I know what you mean about weird hair; mine has been totally straight my whole life but has a definite curl in it now which sadly does not really suit me. Hoping it straightens out eventually. And it’s not come back grey which I was convinced it would!
Apologies if I’m talking too much about the frivolity of hair. In a way it helps me temporarily ignore the rest of the crap.

No talk away about hair and beauty. I’m going for the biggest meeting of my life and I actually want to a sky if I can get my eyebrows bladed. Talk about trivial! The technician said I need a letter off oncology before she will do them.

@Makemineadecafplease I have had many sessions of CBT in an attempt to control my anxiety. Some parts were useful and I was desperate, so willing to try anything. I found it helpful to have someone who would listen to me for an hour a week and she did encourage me to think 'and then what?' as I'm liable to get jammed on one thought and be unable to move past it, I still try to use this technique now. However, much of it wasn't helpful, I found there was an expectation to improve each week and I 'knew' what the 'right answer' was even if I didn't believe it. I also found the homework rather tedious, there was a lot of poster making and filling in sheets. I tend to phone the Macmillan Support Line now if I need a moan and to offload. They can transfer you to a nurse if you have clinical questions and will call you back if one isn't available when you call.

I honestly think that it's hard for those not afflicted to understand the way that anxiety can be all consuming, and how one anxious thought will lead to another and so on.

Fantasea, this resonates with me so much However, much of it wasn't helpful, I found there was an expectation to improve each week and I 'knew' what the 'right answer' was even if I didn't believe it. I also found the homework rather tedious, there was a lot of poster making and filling in sheets

I hated it. And I’d sit there looking at the whiteboard with some kind of list that had been written on it by my psychiatrist and I’d want to scream. It made me so bloody angry but God only knows why. I was supposed to put them in some kind of order of importance, but I don’t even know if that the right word to use, and I’d look at them and think “I can’t bloody choose because they’re all equally as bad as each other bozo”. Not that I should be saying bozo considering it was me on the anti psychotics and not the rather lovely woman looking after me.

And like you I get jammed on one thought. it’s like being eaten alive by it.

@MrsThimbles Similar to your 'order of importance' list, I had to fill in homework sheets where I had to think of 2 anxiety inducing events (so many to choose from) from the week, write my thoughts and give a percentage of how anxious I felt. I then had to write an alternative way of looking at the situation and grade that with a percentage of how much I believed it. Some of it felt very 'junior school' to me - I remember I had to draw a poster with 3 ideas of how I could distance myself from my worries. I must have been quite hopeless as my counsellor, who like yours was a lovely lady, had given me a prompt sheet. I selected the ones I could draw (and colour) most easily which were my worries disappearing into a tunnel, then floating down a river and then being contained in a balloon and flying away. I do recall wanting to draw a hot air balloon to represent my quantity of worries but decided against it.

Thanks @mowly77 I will look into taking therapy. I hope you are doing okay.

@Fantasea I will look at speaking with the nurses at Macmillian, I start Chemo next week and I am panicking already. And yes I do agree some people don't usually understand how debilitating the anxiety can be as my thoughts roll off, one into another rather than being jammed, as i said before i am worst case scenario worrier (i am trying to stop it).

@MrsThimbles working out my anxiety and worries on a sheet would definitely increase rather than help the anxiety. I prefer to talk it out with someone, just have them listen to my rants.

Evening all and welcome @Toughie and @Makemineadecafplease
I can’t advise on hair as mine all falls out at the first whiff of EC let alone taxols. Oddly I still have pubes this time. Bizarre!

Having had a good few days enjoying early Christmas treats I thought I was doing quite well. I drove 150 miles on day 4 to take DM to her appointments then took MIL to her Covid booster so DH could do something else. I’ve been tired but not complaining much. Last night DH had a meltdown. He’s had enough of me being ill and in pain. It’s not fair and he doesn’t like it!
I was quite worried about him and not sure how to respond. He doesn’t want to talk to a counsellor he just wants it all to go away. Usually I send him out on his bike with his buddies and he comes back feeling better but I think he’s reached his limit now. I’m thinking as I only have one more round of chemotherapy I shall ask him to hold on two more weeks and I will try to shield him as much as possible from my discomfort. He is an empath and really suffers when I do. He thinks I am stronger than him which may be true. It isn’t fair and I am pretty fed up too but there isn’t much alternative to gritting my teeth and getting on with it. I think having had a big whinge he is probably feeling better. I did ask if he wanted to do a Boris Johnson and leave me for a younger model but thankfully that horrified him. He is a lovely man and looks after me very well and I don’t blame him for wanting his life back. Don’t we all?
Sending strength and courage to all
Top x

After much thought, I confided in a close friend yesterday that I was diagnosed with early breast cancer nearly 3 years ago (very few people know about my diagnosis because I wanted it to stay private).

My diagnosis was a Stage 2, 1.7mm tumour, removed with clear margins and zero lymph node involvement. Followed by RT and 5 years of Tamoxifen. She asked what my prognosis was and I repeated what my surgeon told me 'a 5% risk of it returning in 5 years, and a 10% risk of it returning in 10 years.'

She asked if those percentages were worked out using results from every woman diagnosed with BC regardless of the size of tumour and staging. She thinks that my risk will actually be far lower than the stated 5% and 10% because my tumour was so tiny, clear margins and no lymph involvement etc.

I had never thought of this before and wondered if any of you lovely ladies could confirm this, please?

@peaceandove Im not sure but I think those figures are ‘all things considered’ for the stage you were given. It’s how Ive gone about thinking of my chance of recurrence but I could be wrong.

Hi @peaceandove it's an interesting question, and in fact I was in exactly this situation with my endometrial cancer because I recognised that I was an outlier in my stage cancer and that the average statistics didn't apply to me because most of the women in my stage had either a higher grade or a more aggressive type of cancer. I went to the Royal Marsden for a second opinion and they confirmed this to me. However, there isn't so much research for endometrial cancer as there is for breast cancer, so the categories are much wider. I think you get a much more precise personal risk for breast cancer, it would definitely be by stage, I don't know what other factors they look at as well to stratify risk. Some of the women with breast cancer may be able to look at your stats and give you a much better informed opinion then I can, but it looks like it would be in the right ballpark to me, so for comparison I think the risk of a stage one grade one endometrial cancer returning is also 5%.

I also meant to say @peaceandove that the only way you will really know is by finding the research that the statistics are based on and working out in what ways you are similar and dissimilar to other women in the group. The research papers, usually break down the statistics, by relevant variables, such as grade, age, tumour size etc. but this can take some statistical literacy depending on how they're written.

@peaceandove how was it Stage 2 when it was so tiny and hadn’t reached the lymph nodes? Do you mean Grade 2? That is the degree of change in the cells rather than how far it has gone. If it was only Grade 2 that would make it less aggressive and less likely to spread. The fact you were on tamoxifen means it was Estrogen receptor positive which is good for prognosis too. I think your friend may be right but it’s all speculation really. The main thing is you are well and free of recurrence 3 years on.

@TopOfTheCliff seeing your dh’s distress must have been so hard. You have both been through so much. And no it isn’t fair. It’s definitely that mountain lion wreaking havoc. 🌺🌺

I've just checked my paperwork and it definitely states it was grade 2 & stage 2? It's a bit confusing.

That's really interesting to read, thank you. I'm thinking that because the tumour was only 1.7mm it would make me an outlier, too?

I'm hopeless at numbers so would tie myself in knots trying to interpret the data, but thank you x

Thank you, that's exactly the way I have been thinking of it, too. But what my friend said has got me thinking, now!

First radiotherapy today. And my birthday tomorrow! Nervous about the former!

Good luck @Gilead - I've not had radiotherapy, but I remember how apprehensive I felt before my first chemotherapy. And happy birthday eve!

Good luck Gilead! Hope it goes okay for you.