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New to Share? Come and say hello!

FormerMember over 16 years ago

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Whether you’re here to talk to others, join a group, ask questions or just listen, everyone is here to offer emotional and practical support to help you with your cancer journey.

We know it can sometimes be confusing when you first arrive, with lots of forums and groups to choose from. So this thread is to welcome you, make friends and help you find your way around the site. Whether you are a patient, family member, friend or a carer, feel free to post any thoughts or questions here and other Share users will be happy to help you navigate around the site and find what you are looking for.

FormerMember over 15 years ago

Thanks for all your answers and links- they have been really helpful : )

Porkie- My consultant at the hospital thinks it is most likely secondary given my age and other symptoms so I am booked in for an ultrasound on the 7th August to check out my kidneys as he feels the issue may be being caused by renal cysts, because there is still the possibility of it being primary he has also booked me in for a bone marrow biopsy and further blood tests so hopefully these will give me clearer answers as to what is going on.

Am still feeling worried about what the next couple of weeks are going to bring but at least I will be going into my tests and appointments knowing exactly what they are looking for and what the treatment will be depending on it being primary or secondary polycythemia.

thanks again

Michelle.

FormerMember over 15 years ago

Hi Michelle

Hope your tests come back o.k and it's nothing sinister! at least you're in the pipe line and it's amazing what they can discover and treat these days. Very frightening when you don't know what they may reveal but remember there's a lot of people on here who've been there got the t shirt and who can hopefully offer you support whatever the outcome. Let us know how you get on. xx

FormerMember over 15 years ago

Hi, my name is Claire, 36 and on June 29th we were told that Mum has stage 4 Oesophageal cancer that had spread into the top of her stomach, the lmyph nodes around her stomach, she has a couple of spots of it in a space next to her stomach, a lymph node in her neck and lymph nodes in her arm pit. I spoke to Mum's nurse privatly and was told that Mum had months - a year to live. I was devestated (and still am of course) but as she seemed so well. I thought that maybe we would be lucky and she would have more time. I should mention that my Mum has Kidney Disease as well.

She is starting Radiotherapy next Tuesday to try and reduce the tumors in her gullet so that she can at least eat. At the moment she can only manage porridge and rice pudding so is having special shakes to give her everything she needs. But, she has lost so much weight and I now know she's not been having enough of her shakes as well (she had the Ensure ones - totally disgusting!) but luckily they advised Mum to try the Nestle Build Up drinks which she does like. Was only advised of this yesterday and only given a couple of samples so will be getting her some from the chemist.

I've just spoken to her and she said she's not feeling well today, she's only had 1 shake and she's having bowel problems. She's been having bowel problems for a couple of weeks, one day she is running to the toilet and then a couple of days can't 'go' at all. She is complaining of pain under her breasts which is obviously the cancer. She's more tired, unable to stand for a long period of time and although is quite happy and chatty most of the time she seems to be able to do less and less recently.

It would be great to hear from people in a similar position. I am the kind of person that needs to know everything and so far I have been to every appointment she's had, I will be taking her to all her Radiotherapy appointments and I see her or speak to her most days. I am researching as much as I can and in fact had diagnosed Mum before we were even told - lol. But I got a shock when they said stage 4!!

Mum is only 60 and at 36 with 4 children I can't bear the thought of losing my Mum :-(

Thanks for 'listening'

Dollface (Claire)

FormerMember over 15 years ago

Hi, I am new to this site. My Dad has just been diagnosed with lung cancer at 67. He has not been given any indication if it is Small cell lung cancer or non small cell lung cancer. At first the consultant said that it was operable and to have radiotherapy but after a PET scan, we were told today that due to my dad's irregular heartbeat, it would be dangerous to operate and that they believe that the best way forward is radiotherapy and chemotherapy. I have looked around on the internet regarding this subject and have found this site to be very helpful. There are lots of questions that I would like to ask but I just wanted to stop by and say hello.

Cooky Wales (sharon)

moomy over 15 years ago

Hello, Claire and hello, Sharon, thank you for coming to a place where you will hopefully find help galore, but anyway, a great place for support on your journey. It is a rocky one, any cancer gives ups and downs.....you might find it helpful trying the 'tag' for your particular cancer, (on the left of your screens ) and join in on one of them that you find, at any rate, do read and find out if one could help you, feel free to join in one one that feels most relevant.

With parents being ill, it often takes minds off the disease by getting their help to make a memory box, old photos, letters, mementoes, write down all the older person's memories......they too will get pleasure at helping get these done for the next generation, its something I didn't and regret, I do remember some of the stories but not all, and it does lose something in the re-telling.

I'm sorry to reply to you both in the one message, but as you both have parents with this wretched unforgiving disease, I thought you might not mind.......my very best wishes to you both, do keep posting....

Moomy

FormerMember over 15 years ago

Hi

I am a newbie so hope I don't make a mess of this post

4 weeks ago my Great Auntie who is 86 was taken into hospital as her GP wasn't happy with some blood test results, also she had been passing blood

Anyway, we knew that she was frail and had had a couple of falls over the last few years. She was moved into a residential home appx 5/6 years ago

Soooo, she was in hospital, tests being done, no they couldn't find what was wrong other than dementia. After a week, they were going to discharge her, but for some reason we haven't been told, they decided to do another full body scan. It found she had HUGE tumours on her bowel, liver (which is now non-functioning) and possibly have cancer in her bones. Nothing could be done. She has been getting worse over the last 2 weeks and has been told she has appx 6 weeks left

She was moved yesterday to a nursing home. She was sedated for the move but responded to my mums voice. Today she is totally unresponsive.

I have never had to live through a close relative, going through this awful illness and we are all finding it very hard. My parents are shattered as their whole lives have now been put on hold. They are my Great Aunties next of kin as she has no other family apart from my elderly grandfather (her brother)

Sorry for rambling, but thats us and our story
Hugs
Beckie X

FormerMember over 15 years ago

dear beckie
So sorry to hear about your great auntie, but welcome to 'Share' anyway. It's always a shock to receive news like this, especially when it is terminal and the timescale is so short.
You will receive a lot of support from the people on this site, as many of us have been, or are still going, through the same thng.
My advice to you and your mum and dad is to make the most of the time that you have left wth Auntie. Sit with her, talk , reminisce, laugh, cry together; hold her hand and tell her what she means to you. don't be too worried if she appears to be unresponsive; hearing is the most enduring of the senses and she will still be able to hear you even if she can't join in. She will know she is loved, and believe me you will never regret it, hard though it is.
I wish you all the best on your journey.
Please keep posting
Sue x

FormerMember over 15 years ago

hi becky im tooo new to the site a lot of what people are telling you is good. ive had the the big op last year and lymph nodes out had chemo but bac at work stay strong for yourself and all the family. we are all with you sending positve vibes and strong feelings of support and love.
bevelle

FormerMember over 15 years ago

Thank you both for the warm welcome.
Its such a strange time at the moment...........I have two children, one with special needs so I am sooooooooo busy, yet I am always on edge that the phone could ring at any second with the news. I am now at the stage that every time the phone does ring, I feel sick in the pit of my stomach.
To make matters worse, I am off on holiday next friday for a week. My husband and myself are taking the children to the isle of wight. I was beginning to get worried that if anything happens in this coming week, I wouldn't be home for Auntie Joyces funeral...........my parents have assured me that IF it does come to that, nothing would happen until i return.

Hugs to you all
Beckie X

FormerMember over 15 years ago

welcome to all newbies on site, dont be scared to post!!!! we are all friends here, we share the same reason we are here! its good to talk to someone, jackie x

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