Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

Thanks for the thoughts all!

I do have a heating pad that is floppy, but its kinda hard to fling it at my ankles and isn't quite large enough for more leg coverage, so have been considering something larger like a heated blanket. I just need some real gentle light warmth, anything warmer and I start to feel nauseous and angry lol. Often I will drape the heating pad on my thighs and put it on low and I drift back to sleep pretty quick.

@KentishMama I noticed with letrozole that Accord was best and the name brand Femara was the worst. Unfortunately I haven't gotten anything other than the name brand Pfizer (Aromasin) at this point and well, now Im stuck with two or three months worth as that is what Boots gave me.

@tam23 personally I think everyone should be genetically tested - I had absolutely no family history but was tested privately and came up BRCA1. Had I not known I would have missed out on some options and my sister would not have known. I understand for cost reasons it isnt 'feasible' but knowledge is power.

About supplements, was just about to order some bone broth for the collagen benefits (+ others) and see if that could help level things out or at least make things tolerable. Ill ask next month about specific supplements, right now fine tuning is a bit in the back seat while I get settled on the other drug and next set of scans end of the month. I know Ive seen folks in teh US suggest tart cherry juice extract as well.

@KentishMama I didn’t qualify for gene testing on the NHS ( too old!) so I paid https://www.color.com/individuals-genomics around £300 for comprehensive cancer and heart disease genetic testing. It took about a month and all were negative including TP53. The saliva sample has to be sent to California but it is all very straightforward.

@HerbalRefreshmentt I take cherry capsules and glucosamine/chondroitin tablets for my arthritis but I think the most helpful thing is gentle exercise like yoga or Pilates. Also soaking in hot water. I think the weather affects my joints too. I’m turning into my DM! This cold is getting into my bones.

@HerbalRefreshmentt i am also a huge heat advocate for this. I have those Cura Heat patches for my low back, several wheat bags, heated socks and a heated throw. The socks are my favourite right now as my ankles are so bad. I’m on anastrozole and funnily enough Accord is one of my worst. I prefer Amarok. I have it specified but only 1 pharmacy can get it and they haven’t for months now, I’ve got one week left until I have to take AI lottery and go through all the side effects again 😭

I take it not available in UK?
Seems a very reasonable price

I’m at a resigned ‘whatever’ stage. Just need to know and will take it from there. He’s calling today so should know soon.

Let us know
Fingers crossed 🤞

@Tilllly you can get genetic tests here privately but they make you pay for a consultation with a geneticist and it tops £500. Color.com just ask you to complete a questionnaire.

Can I join you, please?I
Found a lump in my breast a couple of months ago, but wasn't worried - I assumed it was just one of those things.
Left it a few weeks before seeing my GP just before Christmas. She did an examination and told me that it could be anything, but probably nothing sinister as it was tender.
She referred me to the breast clinic and I was seen within a fortnight - mammogram, and told I'd get a phonecall to offer an appointment to see the specialist doctor.

Phone call yesterday, offering an appointment this morning. I assumed I'd be in and out in about 10minutes, nothing to worry about and no further action needed.
Saw the doctor, who told me the mammogram had shown something, so she did a thorough examination and could feel what had been seen.

I was then sent for another mammogram, and then an ultrasound, during which the doctor told me she'd have to take biopsies of my breast and arm pit.
They were done there and then and then my husband was called to see the specialist doctor with me.
I was told that they seem the lump and were worried about it, and had also spotted a thickened lymph node in my arm pit.
Hopefully, results will be back in time for the results meeting next week, so I am booked in to be seen that day.

I broke down in the ultrasound room and again with the doctor at the end - I absolutely was not expecting any of what's happened today.

@Alsoplayspiccolo Sorry to hear this but you are of course welcome to join us. This group is truly supportive. We have all been in that very same situation, with repeated uncertainty at various points. Fully grasp what you are feeling. Fingers crossed it is a false alarm, but if it is not, you will at least soon have a plan to deal with the situation. I am not great at following my own advice, but try to take it one day at a time, one appointment at a time.

@Alsoplayspiccolo "welcome" .. Sorry you find yourself here but we are all a truly supportive lot and we're here to help you through whatever happens next.

I'm sure the hospital will have told you this, but don't Google. At this stage, if you can bare it, I'd recommend not looking at anything at all.

If it is breast cancer, and hopefully bit isn't, there are so many different types of breast cancer, most with excellent outcomes but all with very different treatment plans, so it's really best to wait until they have your biopsy results and understand what the cancer is.

@Alsoplayspiccolo I'm sorry you find yourself here. There are a lot of us who have been through breast cancer, some more than once, so we do really understand how you feel. This is a really good place to get an understanding ear and to ask any questions - some really knowledgeable people here.

Once you get your biopsy results you'll be given a treatment plan and although you then need to get through the treatment it's somehow easier when you know what's ahead.

You mentioned your husband, do you have others within your support network?

@Alsoplayspiccolo I'm so sorry you're in this horrid phase of waiting for results. It's truly the worst. But until the results are in, your can't do anything at all. You could spend this time catastrophising, planning your funeral. Or you could mount the mother of all distraction missions and try to make the time pass more quickly. Realistically, you'll probably do a bit of both?
For the results appointment, try to walk in with an attitude of "knowledge is power", even if you are learning things you'd rather not have found out about. And have all your questions written down - you can make it DH's job to hold your list of questions and note down the answers. Mine feels better when he has a job like that.

Urgh. I know it's not the done thing on Mumsnet, but I'm sending you a big hug.

Thank you, isaxx and TwigTheWonderKid.
No mentioning of what not to do by the clinic, but very good advice - I have terrified myself by referring to Doctor Google for other health worried in the past.

The specialist doctor said she felt it only fair to tell patients what she was looking at, rather than it come as a shock when the results come back, so I'm assuming she means I should expect bad news.

I turned 54 a week ago and have had Crohn's for 14 years; I've always expected to be told I've got bowel cancer...never expected breast cancer.
My sister died of duodenal cancer 5 years ago, 3 months after diagnosis - she never made it past the first round of chemo before she was too sick to be treated.

Thanks SewingBees and KentishMama.
I'm definitely someone who manages better with facts and a plan of action, so I'll try to use this week to prepare for the next bit.
I have some close friends to sound off to, but not really family other than my husband and 2 children (nearly 18 and 20).

@Alsoplayspiccolo welcome and sorry you find yourself here. It’s hard not to Google so you could allow yourself to look at the NHS Choices or Macmillan Cancer support or Breast Cancer Now sites which are all very good and won’t freak you out too much. While I was waiting for a diagnosis I tidied my house and weeded my allotment obsessively. Keeping busy is vital. I also used the Calm app for the insomnia and anxiety.

I had my third annual mammogram today for B cancer no 1 ( first for B cancer no 2) and all went smoothly. Results in 2 weeks. It was disquieting going back there but the radiographer was very kind. I’m not dwelling it because I am prepping for my hip replacement now instead. It will all be fine.

@Alsoplayspiccolo i don’t post very much on this board but am sorry you are going through this. The waiting to find out is a difficult time. I’m a planner and once I knew what was in store that did help. Look after yourself and sending a virtual hug.

Macmillan are great

My postie has just delivered a letter dated last Thursday...informing me that a CT has been booked for this coming Saturday afternoon 🙄 Because no-one ever has anything on their calendar more than a week in advance <sigh> <adds to phone calls to make list>

Still waiting on cardio calling me too - plain old rude to just ignore. Unfortunately for them, I have cancelled the MRI that isn't local & is a pita to get to. Hopefully they'll realise at some point & actually call me 🤷‍♀️

MH people for dd2 have text me though, and are going to call me tomorrow to sort out re-referring dd.

Hi @Alsoplayspiccolo 👋 just adding to the chorus of this thread's bloody brilliant - & don't google! This is the worst part, the hanging about, not knowing if you're coming or going. It feels much better once you have some sort of plan in place - shitty as that plan might be.

Glad to see your mammogram went smoothly @TopOfTheCliff ! How long til your hip replacement?

Thank you all so much for the lovely warm welcome.
I didn't sleep very much last night and have burst into tears periodically throughout today. Taking the dog out for a walk helped a bit.

@Alsoplayspiccolo Your dog is no doubt going to appreciate an extra few walks this week. Just keep putting one foot in front of the other. You've got this.

The useless nurse specialist called me last night. She contradicted herself multiple times during the call, so it was just really pointless. In the end I told her what I'm planning to do to manage the sinus infection type symptoms, and she agreed with my plan. I suppose that's good, although I don't think her disagreement would have made one jot of difference...
She suggested scheduling another MRI to take a closer look at the sinuses before my clinic appointment on 29th. I took a leaf out of @lucysmam 's book and told her she can schedule it for the same day, but I can't travel 5-6 hours twice in the next three weeks when I'm still barely managing to go to the supermarket on my own. Let's see what happens.... I don't know that another MRI is warranted, to be honest. I've had quite a lot of them recently. Hmmmm.

I love the thought that this thread is creating some assertive ( bolshy?) patients who refuse to attend appointments that don’t suit them. We are people with lives to live!
@lucysmam the hip surgery is two weeks away. I am working hard on fitness but haven’t lost much weight. I comfort myself that the fat is turning back into muscle. I’m definitely stronger and have lots more energy. Today I went sailing wrapped up in thermal layers and it was brilliant. My friends knew I hadn’t been out for about 7 months and arranged it as a treat for me.

Go you @KentishMama ! I'm all for putting my health needs first but sometimes all these "you need this appointment today, that one in 3 days then that one in a week" are too much & little thought goes into whether the timing actually suits us or more than one thing could be done at the same time. Add in the cost of petrol for either yourself or the person driving, or bus/taxi fare & it gets pricey too, which no-one considers while merrily filling your diary with £30 ish worth of travel when in reality you could probably cover most of it in one trip costing less than a tenner 🤷‍♀️. No more asking "how high should I jump?" for me - I'm the patient, I'm in charge of what I do and when.

I have <whispers> no appointments scheduled next week! The week after however, is chocka-block with appointments (and some fun stuff for dd1's birthday). But, all sensibly scheduled so close together things are same day rather than bitting and bobbing about. Fingers crossed the Monday's bloods are close enough to the tooth coming out the following week - I have precisely zero free afternoons to tootle to the hospital for them & am not travelling on my own in the dark to go get them done (it's not optional - they're going to have to be close enough unless there is a HUGE problem with them!).

Do you do ok with MRIs @KentishMama ?

I hate them, I'm not easily scared but I freak

Awww lovely friends 😍

Have you tried measuring yourself, you might be shrinking even if the scales aren't changing

I just lose it off my boobs!