I posted this, apparently, initially in the wrong place, so copy/pasting it here:
Hi. I've had a bit of an achy neck for a while but thought nothing of it, as I've had something like that off and on for years - I normally spend a lot of time in front of the computer as part of my job, and as a general hobby/passtime. I'm perimenopausal and over the last couple of months have had increasing aches and pains so eventually bit the bullet and went to the docs to ask for HRT. I got patches just under 2 months ago. Around a month ago I was getting increasing pain in my upper left leg, went to the docs, got an x-ray, they concluded that it was probably a groin strain. In the meantime, I'd also developed an increasing ache in my right arm and around my neck, and tweaked my back on the right hand side. Mentioned this to the doc at the time who referred me to a back clinic.
Last weekend (12th September), I just couldn't cope with the pain any more and rang 111 who initially arranged for an ambulance (I think because they heard neck and arm pain, with tingling fingers). Not long after I got a call back from what I assume was a paramedic, who cancelled the ambulance but said she'd got me booked in for an appointment at Same Day Emergency Care at my local hospital for 5pm.
Went along - they had no record of the appointment, but did see me. Over the course of several hours they took lots of bloods and an x-ray of my neck. They said they were a little concerned about the results of the x-ray but needed to get blood tests back - sent me home at just after 8pm with a prescription for orimorph (having given me a dose to get me through to when we could pick up the prescription) and an appointment to go back on the Tuesday.
Tuesday resulted in a lot of waiting around and what I think was a CT scan.
We were then told that they had found a tumour in my breast - 1.5 mm in size, and that they believed that was primary, which had spread to C5 and C6 of my spine (she mentioned "lytic lesion"). We were told that we would be getting an appointment to be seen by a specialist within 2 weeks.
I now have an appointment for the 6th October (3 weeks after initial diagnosis).
I have gone from taking paracetamol for pain to it ramping up to the point where I'm on gapapentin three times a day, 10mg slow release morphine capsules twice a day and 2.5ml oramorph (initially they said 4 times a day but when they put my on the slow release ones, they said for breakthrough pain, so I'm not sure how often I can take that).
Usually by around midday I'm feeling okay - a bit spaced out but in a lot less pain, but by the evening it seems to start wearing off. Last night (or rather, this morning around 2.30am) it felt like everything had worn off, I'd taken all the medication to the limits of what I'd been told, and the only thing left was paracetamol, so I took some of that. Eventually I got back to sleep and actually woke feeling not too bad this morning, so I'm hoping it's starting to build up a bit now.
But everything seems to be feeling worse. The pain is worse, the numbness, weakness in my arm and tingling is getting noticeably worse and my back - although the sharp pain has gone, I'm getting random aches in new locations.
I've done some research and seen both the doom and gloom and the more optimistic info, but am just really looking for any advice. For example the morphine seems to have gotten me very much bunged up. I'm normally very regular. I don't feel bunged up, but there has been nothing for a week (doc gave me some laxatives and I've taken the last three nights with no movement).
I have a friend in the NHS who advised me to ask for a prescription costs exemption form and, whilst waiting for that, special forms in order to claim the costs back - which no-one else during this process and since my diagnosis has told me about - in fact everyone I asked (hospital, doctors, pharmacy) all seemed very confused initially about it. And I'm wondering what else I should know?
I'm also rather confused how breast cancer is classed as the primary, when the tumour is so small, yet the damage to my spine (which is apparently then compressing the nerve to my arm) seems so much more.
Hi Stumpy
That sounds horrible and an awful lot to take in at once. It may need more scans and tests before you can get a full diagnosis. The priority will be to find a way of reducing the cancer in your spine and its impact. It’s really scary to find you have secondary spread from a small tumour you didn’t even know you had. I was also probably metastatic on diagnosis, although it wasn’t realised until about 4 months later when I needed a scan for another reason. Liver metastasis in my case, spread through blood from a small tumour because the cancer in my breast had formed on a blood vessel and invaded it. These things are pretty random and rather unlucky.
i can’t offer any help on how to go about getting help with prescription costs but suggest you give our information and support advisers a call on the number below. On the constipation issue, whenever I have needed a period of opioid pain relief, I have found taking a senokot tablet before bed, and using the maximum number of either Movicol or Laxido sachets a day seems to work. You can ease down the number of sachets a day once it’s started behaving.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
Prunes are great too. During chemo I used to buy the tins (trying to avoid the ones with syrup) and have them for breakfast with yogurt.
The prescription process sounds awful. I am lucky enough to be old enough that my prescriptions are free. It’s a good thing as the list seems to get ever longer.
A lot of people live with stage 4 breast cancer for a very long time. Obviously there’s quite a range of levels of spread, and also of course multiple types of breast cancer and therefore different treatment paths. I don’t know if you know yet what receptors (if any) your cancer has, but if you have oestrogen receptive cancer (the most common type) there are lots of treatments. Mine is triple negative which is a bit tricker, but even so I live well and have been metastatic since 2022.
We have another group on the forum for people living with incurable cancer. The primary cancers vary but fundamentally we are in the same boat. Come and join us there if/when you feel able to do so. You will be surprised by the number of people who are thriving and living much longer than they thought possible. We all go through a phase of feeling we have been handed a death sentence but it’s not like that for many.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
