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

[LemonDrizzle10]

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@AGreatUsername That is truly shit, I'm so sorry to hear your news. Like you I am reeling at suddenly finding myself at Stage 4 having originally been convinced I had used up all my bad luck getting BC in the first place.

Any idea on what treatment options there are for you, or are you holding out for the news before contemplating that? I'm a planner so always thinking about next possible steps but I know that's not everyone's way.

@Silkiefloof If you are in contact with Mowly's family you could perhaps ask if they want to ask friends and family to suggest ideas at her funeral, so that the blanket encompasses a wide range of people's memories of her. Just a thought.

Sorry I haven't been back in a while but was struggling to talk about it as It's been a whirlwind of scans, tests and appointments. The consultant told me last week it's in my neck, stomach, spleen and hip. The good news is that it's will respond well to chemo plus he said the fact I've had zero issues with my hip is good news. Apparently it's thinned the bone though so i have to be a bit careful as it's at risk of fracture. My pain is under control mostly atm with codeine and amitriptyline. I've also had steroids and another medication this week. We're waiting for biopsy results then I see the consultant a week tomorrow. He said i will start Chemo before Christmas which I'm keen to do. Sooner I'm treated, sooner I'll recover. I'll need a pic line fitting again i guess. Still occasionally reeling at getting a Lymphoma reoccurrence 12 years on.
Hope everyone is doing well and have had some positive news.

So I’ve already sought a private second opinion from The Marsden who have agreed that the best thing to do is watch and wait. If it’s cancer it is currently only in (inoperable) lymph nodes. Theres no point using up the best treatment line until it’s needed so I would simply continue on until there was more disease or symptoms at which point I’d move on to Trametinib. They have discovered a gene mutation which may make that slightly more effective than average so fingers crossed. In that sense results don’t really matter right now, but it would banish my hopes of a long time NED. I’m sorry that you are also in a similar place.

Thanks Sewing. I only have their address and daughters name.

Though we have a lot of ideas with about 4 people giving a few suggestions so think we are OK now, thanks for your help.

NC but have lymph node groin cancer - chemo didn't work so awaiting surgery after choosing it over immunotherapy. Rather vain question but things are bad enough with the swollen legs and foot and inch long hair but can anyone fell me what to do with this hair of mine- I look like oor wullie!!

Did they give you any radio? I have the same but its secondary with unknown primary.

Unknown primary?
How can they not know?!

The steroids have given me heartburn and insomnia
Sigh

Time to order the puppy then Tillly I got Floof as a kitten whilst on chemo and steroids.

Heartburn I found was those ondansetron, anti-sickness tablets. Need far less than they say or I did at least.

@tilly Insomnia here too! Hope you manage to get some sleep.

@SewingBees Good luck for today!

@AGreatUsername I strongly dislike seeing you here again. What a shit show. I'm also back for take two, though mine is apparently an unrelated second primary. But I'm asking for some more genetic testing as there might be a connection somewhere.

@Silkiefloof Love the plan for the woolly hug.

I'm working on him

I reckon my eldest shld get me one for Cmas, and his wife is working on him

I shall prevail!!! Am trying to decide between Gypsy and Sookie as a name

4 hrs...

@KentishMama
Mine is an unrelated second primary
Found a mutation with this one and think it was probably cause of first

@Tilllly I'm sure you've said this somewhere, but which mutation is it?
The most likely culprit for me is TP53, as that increases both Breast and Bone Cancer risk by a lot.

I ask myself that every day, Im having scans all the time. Its more common than you think. And the outcomes arent great however, Im “lucky” that my biopsy showed its sc with p16 that in 95percent of the cases is hpv but knowing my luck ill be in the 5 percent😃 Ive long had a hysterectomy and have lived like a nun for ten years so, I dont know.

i feel sick about today I cant even be bothered to put any make up on. I’ll force myself.

@EachandEveryone
You get dressed and get some slap on. None of this defeatist attitude Lady

@KentishMama G12C I think
Not common but not mad rare, usually environmental but could have been years ago

Sounds like lots of appointments happening today. Good luck @SewingBees , @EachandEveryone , @AGreatUsername and anyone else.

@Tilllly thanks for the Alan story, that made me chuckle 😂

Not much happening with me, appointment with the surgeon next week and hopefully I will get a mastectomy date. And starting Zoladex to shut down my ovaries.

Anyone got any experience or advice of Zoladex vs having my ovaries out? I've been told that I'll need hormone treatment for up to 10 years and that having my ovaries out at some point would be advisable. I think I'd rather just have them out up front, my oncologist said it's largely up to me. It would be the third surgery in 12 months but better that than having it hanging over me, I reckon.

Stay warm everyone ❄️

With these double cancers I was expecting a gene mutation but apparently I am just unlucky. I should be black or Hispanic and under 40, not 60 and Anglo-Saxon. My favourite theory is that I annoyed a small Himalayan deity while cycling in Bhutan in 2017 and this is his revenge. I am still toying with seeing a shaman for a decontamination.

@AGreatUsername sorry to see you back. I guess as immune and gene treatments get better and more widely used there will be an increasing number of people living with cancer long term. We will need a bigger boat!

Good luck today @EachandEveryone thinking of you x

Steady progress here. Off to woo yoga again today. The studio had a gathering of witches for Samhain this week with white robes and sacred fires and all sorts. They run a business support group for self employed healers. Also they do womb healing for existential crises during menopause. It’s all quite fascinating to learn about but not for me I think. I’ll stick to the yoga and hot chocolate ( cacao).
Sending strength to you all xx
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Hello all, a very strange occurrence has happened, which may be of interest to those of you who have (or have had) a persistent seroma following BC surgery. I seem to be the queen of unusual post surgical events.

I had a great big seroma on my upper chest for over 5 months, showing no signs of getting smaller. It was drained once, some weeks ago, and refilled within less than 24 hours, getting even bigger.

Yesterday I went to my first gym session with the hospital physiotherapist. I am entitled to 6 of these apparently (for reasons completely unrelated to the seroma - more to do with arm issues). He showed me how to use the weights machines and I did a range of them - arms, upper body, legs, etc. It was fun (compared to treatment). Went home, then woke up this morning and my huge chest seroma had completely vanished. What?!! Nothing left of it at all! I have no idea what did it, but I must have done some movement at the gym which just caused it to pop, drain and get reabsorbed all in one go. Well, that was unexpected. Who knows, it may suddenly reappear. But, I am going to keep up with the weights!

On the less rosy front, still trying to decide what to do about my 'indeterminate' thyroid nodule. Must come to a decision by my appointment on Tuesday, in order to think about when to schedule surgery. I will try to write a list of questions.

@AllotmentTime I did 18 months of the injections and almost begged to have the ovaries out. The precise timing and having to deal with day room outpatients and thr inevitable delays drove me nuts. Its such an easy surgery though, 45 minutes and a week of very mild discomfort, mostly due to gas escaping from the shoulder. Paracetamol and walks took care of everything.

@KentishMama i have BRCA1 and TP53 although I'm not sure if the latter was (germline) genetic or developed over time. They try to limit my radiation exposure from scans/rads unless absolutely necessary due to the tp53 mutation.

The breast service was brilliant I feel anyway. Very busy but very organised. Hospital is lovely but £28 to get there and three buses back, everything is fine Fibroedema 2cm. I cried in every single room I went on. Brought last year right back to me but of course I can’t complain anymore it’s just a lot. And I feel for those women that won’t get the same good news today.

Every doctor asked me why I’ve still got a picc line in oh, and how can there be such a thing as cancer without a primary? Which set me off again. Thank you for all your wishes x

Thank you all for insights on the various genetic mutations, it's actually quite fascinating (in a morbid sort of way). I won't know if I have one for a while, but as always, trying to be informed.

@AllotmentTime I'm on Zoladex, about 3 years in. I also can't be bothered with monthly medical appointments, so I talked my GP into teaching me to self inject. It's surprisingly easy. Very big needle, but as long as you have a fair bit of padding around your middle, it's very doable.
I am still wondering if I should get my ovaries out though. I'm 42 now, and if I'm only on Zoladex for 5 years, I'd come off it at 44. I really, really do not want to come back out of menopause, and then go through it again a few years later.