My gut feeling says that my cancer has spread, since I missed symptoms I am afraid I missed other things too. Has anyone here has treatment for stage 4? And any other advice or tips or anything would be greatly appreciated! Thank you all so much, grateful
Felling of dread and feel that it’s likely stage 4 since I’ve missed signs. Looking for advice, maybe inspiration and plans for treatment in this stage if anyone had experience.
Hello Ewagirl, so glad you found us on here. Personally I didn’t have stage 4 but know that there are some members on here that did or have. Understandably you are in a position where you don’t know where you are at and the imagination will be on high alert and you end up super stressed. Have you a doctor you can speak to or a specialist nurse. I don’t know by your thread if you have actually been diagnosed or having symptoms that can trigger thoughts of anal cancer. Before I was diagnosed I was experiencing some anal itching and very occasionally I would see a little blood but didn’t see any lumps or bumps and after googling thought my life was over nut now coming up four years post treatment in June life is great. Hopefully someone with a bit more experience on stage four will help you. Take care
I have been diagnosed squamous not staging but it literally came as a surprise tp everyone so I just feel that it’s been lingering and I didn’t kneo. I’m so glad you’re doing great so encouraging!
I was stage 4 at diagnosis and just had my three-year (clear) checkup. I will tell you absolutely everything in my experience, but please please wait until you meet with your team. I don't want to send you down a rabbit-hole investigating everything (absolutely no criticism, I have done it) before you know. For what it's worth, my only symptoms were skinny poos and feeling a bit tired. And every surveillance scan I have, I am an absolute bag of nerves and experience the dread you are going through right now. I have aches, pains, twinges and changes that I am utterly convinced is the return of cancer, and every meeting I have the oncologist says your scans are just fine.
It is the most stressful time waiting around before the final diagnosis and we all remember it vividly. I am more than willing to tell you about my treatment but my dog is sitting cross-legged so it will have to wait until I get back!
I had many investigations before they finally identified which cancer - the tumour was submucosal and in the rectum. I had had a CT scan so they knew there was a mass, but sigmoidoscopies and biopsies were inconclusive. I then had a biopsy taken under GA and in the same week a CT-guided biopsy taken through my back. When I eventually saw the oncologist she told me that they had identified squamous cell cancer in the rectum, some pelvic lymph nodes and a spot on the lung. She explained that I would be started on six cycles of chemotherapy, carboplatin/paclitaxol, one cycle consisted of three weekly doses and then two weeks off, so six months in total. This systemic chemotherapy was to shrink all the cancer and prevent further spread. I had a scan half-way through to make sure the chemo was working.
I tolerated this very well apart from a couple of hiccups, and then had a couple of months off and as I had had a good response they went ahead with the standard Nigro protocol in February. I was worried about the gap but was told I need a break after six months chemo. That treatment ended mid-March and a week later I had the first lung ablation and then a second (there was a another suspicious area that they treated for good measure).
Then I had the first scan three months later, I didn't even ask if it was clear, we were on a ferry to Spain for a long holiday the following week!
But I very much hope that all this information is totally unnecessary - I cannot stress enough how the mind goes into overdrive when diagnosed with cancer but before knowing the extent or the treatment plan - I was in this bubble of absolute terror and once treatment started - even with a stage four diagnosis, I started to feel some hope. I still have black moments, always around scan time, but the rest of the time I am getting on with my life - a slightly different life but one that I love, nonetheless!
So whatever your diagnosis, we are all here to support you along the way.
Wow! You are strong and brave! Thank you so so so much for sharing this and so glad to hear how you are and that it worked! Thank you and thank you for the inspiration!!
Ewagirl, I really wasn't brave, I had no choice! I came back to edit my post because I thought I might have totally alarmed you and I wanted to reassure you that the anticipation of having all these procedures was far far worse than actually having them done. The only pain I really had was after one of my lung ablations when I had a pneumothorax but they were very quick to really dose me up with morphine. That and cannulas, I have tiny deep veins!
I had an external lump for a good year before i went to the doctors (I thought it was a cyst) and then they misdiagnosed me, so from that doctors appointment to diagnosis it was 6 months. Once I was diagnosed I looked at the symptoms and I checked all the boxes but nothing I would have gone to the doctors about as apart from being tired which I put to not going to bed early enough all the others were just now and again so you just think it's nothing, I did anyway. I was diagnosed T2 N1. What I'm trying to say is just because you missed things doesn't mean the worst. I get at your point in your journey your mind goes into overdrive with all sorts of scenarios, I know its easier said than done but try and keep busy with things you enjoy to take your mind of things. Even if your gut is right your doctors will have a plan, Irene75359 is proof of that. Sending hugs. Xx
You are in the terrifying position of having had the diagnosis but without the full information. It’s absolutely understandable that this is the time when the mind runs riot and jumps to worst case scenarios.
I will echo what some others have said. For many of us, it took a long time to get to the point of diagnosis, months or even years for some. The important thing is that you’ve got there and will soon start treatment and have a plan and a team to support you through.
Mine was T2N1 so I don’t have experience of stage 4 but I can see that the lovely Irene has shared her journey. There are many of here on the ‘other side’ of treatment but I know that I definitely felt like you in the early days and remember how frightening it was.
I did have a full response to treatment despite convincing myself that it wouldn’t work for me!
I hope you get some more information and a clear plan soon. Meanwhile we’re all here for you.
That's great news that things are starting to move for you.
Once you have had the scans you might have a wait for the results, so don't let that worry you - your team get together to look at the results and discuss the best treatment plan for you, so although you might feel a bit anxious waiting, you can be sure they are preparing and setting things up for you.
Once you have your dates, you will feel much more positive and in control. It can be quite tough on your body but is usually really effective, as you can read from others posts.
