12 Week Scans - Scary Time & Come Around Fast ….

Hi all,

Not sure what I’m expecting, other than I’m feeling very alone & quite isolated. I went back & forth to my gp with swollen joints my ankles knees fingers wrists, my back hurt as did my hips. My gp sent off bloods but I didn’t have any arthritis markers, but they sent a referral for me to be seen at a local hospital, after almost 9 months of waiting & being almost unable to walk, I paid to see a private rheumatologist who diagnosed me with rheumatoid arthritis & explained not every one has markers & those who don’t tend to fair better on treatment. He wrote to my gp & the hospital with his findings. A few days later I had a phone call from the local hospital & an appointment a few days later. They discussed treatment scanned all of my joints & the last thing was a torso X-ray, whilst in the room the radiographer advised she was unsure if my rheumatologist would want another X-ray SSE went away 2 mins later took another X-ray & I was allowed to go home.

The following Monday my mobile rang, it was my rheumatologist not the pharmacy team as expected, they couldn’t start me on the treatment because they thought I could have lung cancer.

I was diagnosed with stage 4 lung cancer May last year, I was going to have surgery to remove the top lobe after radiotherapy, but the final scan of my body was my brain & a tumour was found near my brain stem, so surgery wasn’t an option & I was given 12-18 months to live. I had staging done at the beginning of May & again at the end of May & my cancer had almost doubled in size & was 11.7x9x6 cms.

I had SRS treatment for my brain tumour, then 4days later started 10 rounds of radiotherapy to my right lung, no-one advised how painful it would be as the cancer initially expanded. I was given slow release morphine plus liquid which helped with th pain, but I struggled to sleep for what seemed like weeks.

i had a break of about 4/5 weeks before starting 2 types of chemotherapy plus immunotherapy of which I had 4 rounds. I now have just immunotherapy every 6 weeks for up to another year as long as it holds my cancer at bay & I continue to tolerate it.

My oncologists is of the opinion that my cancer kicked off at the same time as my rheumatoid arthritis 10 months before I was diagnosed. Had I not had to wait so long to be seen for my arthritis I’d not be terminal. In between time just as I started chemotherapy my then partner was not supportive, was unloving totally uncaring, became totally self obsessed or maybe I’d not noticed, told me as soon as I was gone he’d sell  the house we’d chosen together & move, days after I was given my prognosis, he had me in tears so often telling me I was the uncaring & unloving one, when I’d attended almost all appointments alone, so I ended the relationship & have continued my treatment alone with my dog, who’s been my strength & purpose.

i saw my oncologist Friday, my right lung is stable but I have an infection in my left lung, so I’m on antibiotics, results of my brain scans aren’t through yet. The last ones showed another brain tumour, I had more CT’s & MRI’s a new mask made & 2 days later the hospital rang to say the SRS treatment wouldn’t be going ahead because the new brain tumour had shrunk to being almost invisible, so I’m hoping it’ll be the same & not an issue.

I’ve treatment next week as long as my bloods are ok. …

  • Hello Willow-Wizz and welcome to the Cancer Chat forum.

    I'm so sorry to read all that you have been through with your lung cancer diagnosis and your partner. I can't begin to imagine how incredibly difficult, upsetting and challenging these last 18 months have been but I want you to know that the Cancer Chat community are here for you Willow-Wizz and I'm sure some of our members will stop by soon to offer their support and advice.

    It's great to hear your right lung is stable and that the new brain tumour has shrunk to almost nothing. This must have been wonderful news to receive and I'll have my fingers crossed your bloods are o.k so you can continue your treatment next week. If you have any questions or concerns that you'd like to discuss with one of our cancer nurses, you can do so on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very insightful and will do all that they can to help.

    Do keep us updated on your progress when you can Willow-Wizz and remember that we are sending you all our support and will be by your side on every step of this journey.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Thank-you Steph for your reply very much appreciated

    My oncologist rang me Tuesday, to advise on the details from my brain scan the week before & I’m pleased to say that although quite rare, the tumour that was seen on my last 3 monthly scan, then reduced in size is now no longer visible, which means that my oncologist is now happy for me to be able to drive again. I’ve been unable to drive because of the SRS treatment & then a further tumour, since May last year. It’ll give me a little freedom to go where I want when I want, obviously should I have another brain tumour it’ll be revoked again should I require more treatment.

    The rest of my bloods came back ok & I was able to have my treatment last Wednesday, although I am feeling quite jaded which I’m sure I’ll pick up in a couple of days. I’ve signed up to do the Shine10k Night Walk in Manchester next month, so hopefully I’ll be feeling a lot better for then

    I’ll keep you posted on my journey & how the walk goes, thanks again for your support.

     

  • Hi Willow-Wizz  I am sorry to read about how much you have gone through.  The good news is that your brain tumor has shrunk so much as not to be visible and you are able to drive again.  I have metastatic breast cancer with mets in most of my bones with the spine being the most painful.  I was diagnosed last year.  Had cancer 12 years ago.  I have four dogs (and a husband)  but the dogs make me get up and go walking every day.  I find that the exercise helps.  I think you are doing an amazing thing be doing the Shine10k Night Walk, are you taking your dog?  I just wanted to say I am here if you want to chat, you are not alone.  The Macmillan website has a forum called Living with Incurable cancer forum - patients only.  I find this very helpful as there is a thread for daily chat, hobbies, gardening, whatever you want really and we are all in the same boat.  Having palliative treatment.  Big hugs.

    Lee x