Hi, I'm feeing a little overwhelmed at the moment.
I was diagnosed with lung nets in 2011 and had a successful op, monitored until 2015, and given all clear. In 2019, by a fluke, it was discovered i again had lung nets, but now 2 or possibly 3, difficult to tell. I started on Everolimus. There has been continued, if minimal growth between scans. I also started on Lanreotide injections. ((Within 9 months of that diagnosis I found i had breast cancer (not related to the nets) and i again have had surgery.))
At my last appointment i was told that there had been substantial growth between scans and the Everolimus was no longer working as it should. I was told my only course was Targeted Radionuclide Therapy, which is unavailable on the NHS for my condition, and would cost in the region of £90k. Unfortunately I was on my own at the appointment so my head wasn't in the right place. (i did ask about chemo, but was told that it wasn't very effective and side effects weren't worth it.
Surgery has always been ruled out because of the location in the lung) My husband has emailed the consultant with questions I wasn't able to ask, but we've yet to have a response.
At the moment all I can think about is when am i going to die. I accept it is going to happen, but at the moment i feel lost, not knowing what i need to know. My husband isn't sleeping and we're both trying our best to be positive. I don't know where to go or what to do next.
Hi Buffy618875f2,
I'm sure that some of our other Community members will be along to welcome you in soon. In the meantime, may I welcome you to this little corner of the cancer support forums on their behalf.
I'm really sorry to hear that you're feeling so overwhelmed at the moment. Although it's far easier said than done, I hope you will try to be kind to yourself about the way you feel. You have received significant news and it's only natural that this will take some time to digest.
It's good that your husband has been able to contact the consultant so you can both get more clarity. Have you heard anything back yet? If not, you may like to consider chasing this up with your consultant's secretary, or the hospital's central switchboard if you don't have their number.
If you or your husband ever need to just tell someone how you're feeling, please don't hesitate to call our Information and Support Team via our Macmillan Support Line. They can be reached on freephone 0808 808 00 00, and they're open from 8am to 8pm, 7 days a week. They can also help you to find out about what additional support might be available to you, so they're a good first port of call.
If you have any questions about navigating the NHS, treatments, medications, or managing side-effects, you might also like to get in touch with our Cancer Information Nurse Specialists. You can get in touch either by phone on our Support Line (just select their option from the main menu), or by posting your questions on our Ask a Nurse forum.
Don't forget that you're not on your own. Macmillan and the Online Community are here for you both. Just reach out whenever you need us.
All the best,
Matthew
Macmillan Online Community Team
Hi Buffy618875f2 I am so sorry to read your post. You have been through such a lot already and to hear that the Everolimus has stopped working is devastating news for you.
Years ago we were in a similar situation with my mum who had breast cancer, then ovarian cancer. We were told that there was a drug available but it would cost 30 thousand pounds a cycle, and she would need 6 cycles. It’s cruel to be dangled a carrot that you are never going to be able to reach, because we never had that sort of money. Mum did go on to have a couple of trial drugs though which did prolong her life for a while, so maybe that is worth asking your oncologist if there are any trials available in your area.
