Hi, I’m new here. Diagnosed December 2021 with stage 3 distant scc hpv a/c.
my initial oncologist gave me a 18-36 month. Palliative care
I changed my oncologist as the initial one delivered the news in such a hopeless way.
the radiation worked great, the tumour shrunk from 6cm to 0.8mm, there is still decease in the area, they said my lymph nodes, groin, thorax are clear too, I have a meta sis somewhere to the lower rib cage are that he been described as ‘bad luck’ no guarantee to get rid. Said def not curable.
a mass blow to my life at that point, I’m 45 married for 20yr with a 17yr old daughter and 20yr old step daughter.
my outlook up until chemo started was really good. I was positive and getting on with things really. To a degree.
Since chemo (carboplatin and paxa) my moods has been so low. I can’t stop crying uncontrolby
i think I’ve done a lot to help myself too;
stopped smoking
no caffiene
mire fruit and veg
bottles water
less alcohol
alkaline my body
Has anyone had the same or similar diagnosis and prognosis and had positive outcome long term?
thanks
in advance
Hi Cherry2004 and a warm welcome to our group. I am so sorry to hear of all you've been through and prognosis. It's little wonder that you feel as you do, there is so much for you to cope with. On the positive side I see you're doing all you can to stay healthy.
Congratulations of giving up smoking! This must have been so hard to do considering what's happening with you right now.
In relation to how you are feeing, I am wondering if you would feel able to confide in your GP? It may be beneficial to have a chat and see what he/she recommends. There is of course the option of anti-depressants and anti-anxiety medication which your GP will be able to advise on.
Additionally, your treating team at the hospital could refer you to an Oncological Counsellor. It can help enormously to speak with someone who is specialised in this area and who you can offload to and who can help with techniques for stress control and so on.
You can also call the Macmillan Support Services for emotional support. Most services are open 8am to 8pm, 7 days a week, it's free to call on 0808 808 00 00. I know that others have spoken very highly of the support they have received from the support line. Finally, there is a group on the Macmillan site for those who have been given a prognosis such as yours. If you like, I can send you the link to the group. Bev x
Hello Cherry, I am so sorry you are feeling so low, and that is hardly surprising after the prognosis you have been given. I don't know much about your secondaries, however the oncologist treating me was one of the worldwide team whose research changed the way in which anal squamous cell cancer is treated to the carbo/taxol regime. She has been treating many people, including one woman who is classed as incurable but who is getting on with life with regular chemo and has been for the last ten years with the cancer kept under control. This gave me some hope in the very dark days after my diagnosis. Bev has given some excellent advice about counselling and medication for your depression; I couldn't have coped without the anti-depressants my doctor prescribed for me, please think about seeing your doctor and getting some help. Sometimes if you are deeply depressed it can be difficult to even make the move to see your doctor but medication can make such a positive difference. And well done for all the things you have done to improve your health. x
Hi Cherry,
It's a tough diagnosis, and such a credit to you that you took it with such fortitude. I'm not surprised that chemo crashed you- it's SO hard. Don't try to tough it out! You're such a young woman, and with our without a complete clean bill of health, you've got so much time ahead! Ask your doctors for meds for the depression, and get thee to a support group and counseling.
I'm in awe of how much you've done already to take care of your body. You're amazing.
Tears make sense when you think of what you've been through and how much you've done, but give yourself the gift of treating the very natural depression just as extensively as you've gone after the cancer.
You'll see your grandkids yet!
Thank you for your kind words and motivation. I had made the call to the doctor.
a little awkward she asked if I was ‘ok’, ‘no!’ My reply followed by floods and floods of tears. She sat and stared at me and asked ‘do you feel like you want to commit suicide’ ‘no!’ I said and sobbed uncontrollably. Here I shall prescribe these - it does get worse before it gets better!’
I took 4 days worth and not sure if I liked them. I’m not sure.
I do have a councelling session next week with the cancer specialist one through the team at NHS.
I am so glad I found this page, I am on a few on Facebook but a lot of that is from America.
again, thank you
Hi,
wow, thank you for your kind words, this IS an inspiration story.
are there any details of this ‘bev’ is she on YouTube or any other?
I feel better today and I have actioned to get things sorted, not a great way to be living and I am lucky enough to have friends and family around me.
Hi
thank you for your information. I think I replied to another post about ‘bev’ could I ask the same question to you do you have more details about ‘bev’? So I can have a look at her information?
the replies you have all sent have been really comforting to read.
I think 'Bev' is 1in1500 who first replied to you. I have found the article, and I know that the lady she mentioned in the article isn't the only one that she is treating. This is the article. https://www.cancerbrc.org/news-events/news/royal-marsden-trial-leads-practice-changing-milestone-advanced-anal-cancer
I was looking for other oncologists to get a second opinion but she filled me with confidence and when I found out her level of expertise I stayed put! She didn't promise miracles, she was just very positive and bullish about treatment and took time to really explain everything to me.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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