Hello and Terrified

Hi Jason,

Sorry you have received this diagnosis. I remember how I felt when I received mine. The waiting fur results is always difficult and worrying. Good that you are getting your PET scan next week. They should be able to come up with a treatment plan after that. There are many different ones available. What were your symptoms that led you to having the biopsies? For me, it was a difficulty with swallowing, a feeling that something was stuck in my throat. I have since been through endoscopy, CT scan, a couple of PET scans, a laparoscopy, chemotherapy and major surgery. The last 11 months have been rather difficult to say the least!! Hope you hear something soon. Whatever the news is, I always felt that knowing was better than not knowing. Good luck. CB

Hello Jason, 

I'm sorry to hear about your diagnosis. My husband went through the same process just 4 weeks ago. His diagnosis was similar, but he has since been told that the cancer is stage 4 and inoperable because of the spread. Everything has moved very fast, with all the NHS staff being wonderful. Today was the start of his first chemo cycle. The next one, in a fortnight, will include immunotherapy with either a trial drug or placebo. There could be up to 12 cycles, depending on how well the treatment is working and if he is tolerating the side effects without too much discomfort.

It's an emotional rollercoaster but we both feel calmer now the treatment has started and have heard some stories of people with a much better outcome than initially indicated. So, we are staying hopeful. 

Sending you strength and optimism.

Hi Cool Blue,

I am sorry to hear what you have been and are going through mate. I have the same symptoms of swallowing and food always getting stuck in my throat, drinking copius amount of water to try and help the food go down. So far I have had a CT scan, a Barium Meal test and today the Endoscopy. TBF what is making it worse is, the ENT consultant who first noticed it, kept telling me it is very sinister, pulling faces and the body language was like she was hiding the truth and new more than what she was telling me. I got the same vibe from the Endoscopy nurse today. Especially when she described the look of it.

Thank you mate, wish you all the best my friend

Thank you, I am sorry to hear about your husband. I really hope it gets better for you both 

feel for you cool blue, just posted about our experience yesterday, keep tuning in to here as i found out yesterday no one had mentioned the next stage after ct pet scan was for a laparoscopy that could see if the little so and so had moved downwards.  use this forum as a check list, wish i had, instead of going by pack i had been given.  keep us updated, have just had a call back from specialist nurse who has cleared some bits up from yesterday, apparantely laparoscopy is done on back of fitting the j food tube which i dont need yet, so confused, just trying to take stock and take a breath, keep us posted, lot of honest feed back on her, and some positives when you really need some help, any questions or updates just let us know, good luck

My husband is still able to eat, just being careful about what and when. The fish and chips last Saturday lunchtime were not a good idea and wrecked the rest of his day and sleep until about 4am. We think it didn't help that he was pretty hungry do didn't chew or take his time as much as he needs to now. Anyway, no need for a stent and no laparoscopy. Hoping it stys that way.

LozzaT, so similar, after having no appetite and weight falling off for ages, and at the time saying again and again to breast oncologist should we check this, told it was effects of radiotherapy for masectomy, just given shakes.  so frustrating that now this new one is on the scene, that now i actually feel flippin starving and like your husband, after a long and mentally draining day at the oncologist appointment, husband had bag of roast chicken crisps, whats the worst that could happen right, well usual, small few bites, yummpy, skip forward 20 minutes, horrible stuck feeling, pain in back and chest, and the lovely amazon blue sick bag earning its keep, so still on the shakes, and soups of course, going to do a mini taster day today, did wonder why when all this diagnosis kicked off was getting calls from wiltshire foods, and lovely pureed food leaflets, understand now, is there any thing that your husband can manage, think i have learnt my lesson on just trying something, usually worse if its been a stressful day for what ever reason, after being ill in my hand bag in a lovely restaurant, only tried a tiny bit of my husbands selection, think the penny is dropping finally but my god you do pay the price, hope its all going well with your husbands treatment x

I typed a reply but a random laughing emoji appeared and I couldn't delete it. So I had to delete the whole message. What I wrote was that you did well to try crisps. Also, different foods go down ok some days and not others. What treatment are you on?

In my experience, weirdly, foods like crisps and crackers went down easily but bread and meat was totally off the menu! I completed my four cycles of FLOT a couple of months ago now and am going for the operation next week. Eating improved immensely after just two chemo sessions and the side effects including nausea , neuropathy and lethargy weren't great but were manageable. My biggest problem was although I could eat pretty much anything I suffered a total lack of appetite and taste which led to a big weight loss. I've now put it all back on (and then some) post chemo courtesy of many Spoons big breakfasts in readiness for the weight I know I will be losing post surgery. Good luck to everyone on this journey

nothing yet, complete shambles at the first oncologist appointment yesterday, told by nurse you wont get surgery, but will get flot, oncologist had down chemo, radiotherapy, and surgery, fed up of being pressured to have food line in, after yesterday being told anothe procedure if it showed cancer we cant treat you, am on my knees literally, mentally, dont know what the hell is going on, went to pals, and as i couldnt sleep last night left message early doors this morning for specialist nurse, got call back, very apologetic, but what that put me and husband through, christ, not coping hence i am down stairs and he went to bed, just not sure if i have it in me to be the strong one, so scared, lonely, terrified, and tired, sure tomorrow will be better, cant be any worse right, some days you just havent got this right,

thank you all xx