Hi this is my first post , found out i have lung cancer 3 days ago. I went to my DR,late April for joint pain . She arranged for bloods and 2 xrays 1 for my hands and the other for chest i asked her why chest ?you have clubbing nails and this is a sign of lung problems !! never heard of this and i work in a hospital
The blood results confirmed i have rheumatoid arthritis the chest xray showed shadowing
She then put an urgent request to Southmead hospital Bristol for a CTscan early May she told me i would hear between 7 to 10 days 5 weeks later !!!!!! i had a CTscan i was going to work and had not told anyone of my plight until i was told of the outcome from professionals
5 weeks is a long time to make someone wait for a urgent referral and i was so angry
The CT scan confirmed a tumour I made a decision to ask for any other tests to be carried out at another hospital in Bristol
Within less then 2 weeks i had an appointment to have a more detailed CT scan and to meet with a consultant at the Bristol Royal Infirmary
They have arranged a PETscan next week for me at Cheltenham ,Southmead hospital has spent millions on there new building wasted money on art work architecture and landscaping but they make patients wait for urgent care
Right thats my moaning done for today no not yet has anyone worked out how to read that stupid clock in the new Brunel building that also cost millions because i,m dammed if i can
So its looks as though its going to be at least another 2 weeks until i will know if the cancer has travelled and what treatment i will be offered
I finally told my Son and daughter last weekend which was so difficult my son lives in Derby and daughter in Worcester I am separated so no loving husband to give me a hug
I had my first grandchild last year and Derby feels so far away before this happened i would jump on the train and spend a few days spoiling her rotten shes my little precious i love the time we spend together and when i think of her i cant stop crying i,m finding i get tired by lunch time i,m trying to give myself a few tasks per day
i,m 61 before all this i never felt my age but at the moment i feel like a 90 year old and i should be purchasing a shopping trolley
Also been trying to find a group talk meeting where i could talk to other patients that have recovered and know how i am feeling i live in north Bristol
Well ill leave posting now and wait for feed back thanks for reading this post
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hollyboo
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Welcome to health unlocked British Lung Foundation group. You will never feel alone on here. Just wanted to say hello while you wait for members who can give personal feedback
You have had a truly horrendous time. And there is no excuse for the delay over the scan results. You have come to the right place. There are members here with similar problems, and don't worry about moaning. We do moaning here. We have all moaned. We are also good at listening,with lots of e-hugs, and e-tissues. Have you thought about complaining about your treatment? The place to start would with the PALS department at the hospital.
thank you for your kind words at the moment i can only deal with one thing at a time and try and get through the day just keeping things simple because my concentrations levels are not good i keep a note pad to remind me of things i have to do , things i should try to do and things i may like to do for me so i set myself a few targets every day and tap myself on the back if i achieve them but finding this web site has given me another little world and i,m so thankful to everyone
hi and welcome hollybooo! i am so sorry to hear what you are goi g through. unfortunately, up here in Canada we can have the same long waits for tests. it is so very hard on a patient who is waiting and worrying. you say you are very tired and unfocused! i believe most of this is due to the wait for more answers and plans. try not to take on any new "must do" responsibilities. if you can, just do what helps you feel a bit better. if the floor needs mopping, tell your fairy godmother to grab the witch's broom!! wishing you good luck and peace!
I'm just letting you know that you are not alone here. There are lots of lovely people to help and support you. The nurses on the phone are fantastic too and they are very happy to help and advise. More importantly they listen.
You are in shock! I know how that feels. Everything is so hard to take onboard.
I'm sending you are very big hug to show we do care xx
Hello hollyboo and welcome to this great forum. You have been treated very badly and my heart goes out to you. I really hope you get better treatment now and wish you well. Xxxx
You're going through a dreadful time and not having much confidence in your medical treatment must make you feel so vulnerable. I've found this forum is of great help and you will get that help here too. The very best of luck at your next appointment. Lilian xxxxxxxx
yes i think its the waiting thats putting a toll on me
Hi Hollyboo
Sorry to hear about the awful time you're having. Hope they don't leave you waiting for treatment. It's so hard keeping that smile on your face but somehow you must. This is a great group and so far I've found everyone really kind and helpful, I'm sure you will too. Take care and keep posting to help get things out in the open rather than suffering in silence
Hello Hollyboo, keep your head up. First off, I have 'been there and done that' , at age 60. The PET scan essentially is a CAT scan but with a special dye inserted that shows up in the actual scan . Basically where cancer is will show up vividly in colors . Assuming it is cancer, they next will likely do a bronchoscopy to get a tissue sample. If the sample is cancerous, they will review potential treatment plans with you at that time . I have so far, knock on wood, beaten the odds and am still kicking! Basically, keep your dobber up and a smile in your heart. And importantly, don't jump to conclusions , and instead take it one day at a time. Please feel free to contact me if I can be of assistance. Best Wishes & Kindest Regards, judg69
thank you i have had a biopsy and it confirmed non small cell my second ct scan was on my vital organs this appeared to be ok so a bit confused what the pet scan will show
Hollyboo, PET Scan will better delineate the size and extent of the cancer. Again , contact me if I can answer any questions. In the meantime , light a fire under the rear ends of NHS. It is absolutely wrong to make a cancer patient wait for tests critical to Dr's developing an informed action plan. I am very serious, get on the phone in am , or better yet speak to the Brass at NHS in person and raise Hell! Kindest Regards,judg69
Hi hollyboo.....it saddens me for the way you have been treated....if you ever want to sound off, come on here because this is where you will find all of your friends in this fantastic group....ROOTING FOR YOU! Take care and Stay safe.
i have asked my ex if he will drive me up to Derby the week after my PETscan prior to hearing my results
Although we don,t communicate much he has agreed , my son is in the process of moving house and i would dearly love to visit them when are settled in so god willing i will be going on the 26th of this month and stay for 1 night happier days !!
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So sorry to hear this hollyboo and welcome to the site. Don't forget these days more patients than ever are living with cancer and treatments are getting better and better over time. I wish you all the best and also send you big hugs. xxx
So sorry you have been having this problem with Southmead as I go there too. On the whole I am pleased with the care when I get it but sometimes they are very slow. I had to phone for letters which I had still not received after 4 months, but on the other hand I had an echocardiogram on August Bank Holiday Saturday last year. I have now been transferred to the Heart Institute at the BRI and have been told that I need cardiac catheterisation to confirm pulmonary hypertension, and will have it within 6 months, so I hope things go more quickly for you. Good luck
This is for Carnival567 They told me in my hospital I should be looking at 6 weeks for my cardiac catheterisation? Or maybe we both missheard and it will be 6 weeks befoe we know when it will be?
For Offcut, thanks for reply. I'm certainly hoping it will be quicker than that, likewise ambulatory oxygen assessment. At the moment I feel as though I am waiting, waiting, and nothing happens. Once this week is over I shall get on to BRI about post consultation report and then GP. It is very hard remaining cheerful is it not, my husband is wittering about his back surgery etc, convinced he will be paralysed, my daughter-in-law is expecting her baby in a month and I don't want to put worries on her or my son, especially as her mother died of lung cancer only six months after Konrad was born. This forum is a lifeline. Perhaps you are right about waiting time and he did say six weeks, but I don't think so. Blessings xx
Sorry to read your sad news if the done biopsy the should of done DNA test to see what the dealing with DON'T forget to ask and best treatment unless patients ask these questions nothing will change.
Hope all works out well and Taylor good treatment that works for you.
Hello and welcome to the group. I'm so very sorry that you're going through such a tough time and have been treated so poorly. Wishing you the very best of luck with your future treatment. Ill be thinking of you. XXX
Welcome to the site Hollyboo, sorry to hear it is not good news that brought you to the site. You definately should not have waited five weeks, I just got a cancer test done within around ten days, however our city does have one of the best units in the UK. My test was clear by the way. Sorry that is not the case for you, glad it is moving along now though the quicker it is treated the higher chance of survival in the case of lung cancer. Hopefully someone will be along soon who can advise you about group talks in Bristol, beleive the do have a cancer backup group there, so hope you find the details soon. Best Wishesand do take care xx
Sorry to hear your news - it can be so scary. However, there is so much hope so keep on fighting & being positive. 9 years ago I had right kidney and lobe of left lung removed because of cancer. All still well (fingers crossed) so no reason you shouldn't watch your lovely granddaughter grow up. Please keep us updated. Hugs and all best wishes x
had news early this morning my son his wife and my precious grandaughter are driving down today staying 1 night so lots of things to do today they will be in Bristol 3pm so i can pace myself in preparation for when they arrive my mood has been so up lifted its a dry sunny day so i can sit and watch her playing in the garden
Hi - So very sorry for your sad news. I can suggest an alternative to a shopping trolley! Get a toy boy to do it for you. Hopefully that will take your mind off all the other things you have to deal with. You are never too old.
Hello hollyboo and welcome. So glad you are here but not why you are here. I too have Rheumatoid Arthritis and a lung disease because of it.
I am quite shocked that you had to wait so long for the scan. I can well understand your anger. Anyone would be angry. What is the course of action now?
I am sure your children are also extremely upset. Living away from parents is very difficult.
I hope you are getting the urgent treatment you need. This forum is great for support and giving support. Hoping to hear from you again soon. sending a big hug.
my first CT SCAN report was a 23mm tumour on upper right lung and a 10mm on upper left lung there is a ? mark on the left spot whether this is a cancer as they only took a biopsy from the bigger one on my right
the report was Adenocarcinoma
My 2nd CTscan focused on my lower chest areas ,all my vital organs , they report there was no evidence of cancer
next is a Pet scan next thursday
i have had a lung function test and that was ok and thats all i know at the moment so who knows im just in a bit of a haze
Now then, now then. That grand daughter of yours needs you to guide her, love her and importantly spoil her rotten!
I understand the shock, worry and the unknown but do not not go see her as before. She will miss you and trust me any little one help a tired grandparent feel better.
I hope the outcome is as positive as it can be for you.
Smile, you are loved by that little one and your family.
i thought i would post this before i go to bed which will be very soon as i am all done in but in a good way because i have been playing with Robyn (granddaughter) in the garden ,took a slow stroll to my local park with my family and my 2 westies and have just finish clearing up and putting things away
How quick this weekend has gone by and how i didnt think of my illness for most of that time but here i am again
So tomorrow is another day , and i look forward to hearing from you my friends
Dear Hollyboo Please hang on in there I was diagnosed with Non Small Cell Lung Cancer on my right lung in 2000 after a late diagnosis due to a clerical error! But that's another story in itself I had my right lung removed 02.10.2000 and I'm still here. I was diagnosed with COPD in 1996 My first 12 years was as if I had nothing was wrong with me but since a very bad infection that I got while I was in hospital for an outpatients appointment in 2012..... my lung function has declined but it's nothing to do with the Ca diagnosis From July 2016 I've been on the Active Lung Transplant List at Harefield Hospital so I'm still hanging on in there!!!!! I got a call for a transplant in January this year but the donated lung (I'm only having a single lung transplant) failed to pass all it's tests for transplant.
I believe I know the worry you're going through I know everyone around you is devastated When I didn't know what was going to happen - only that I had lung cancer - a friend said to me, "Nothing's set in stone" That meant so much to me. It was such a comfort. I hope it can be for you, dear Hollyboo "Nothing's set in stone"
Big big hugs and I'll be thinking of you very often and wishing you all the best - the very best
I do not know how you feel as we are all so different but the the best thing is to get angry with the cancer and not let it take you down. Easier said than done I know. There are great advances of treatment now so make sure you specialist is clued up with what’s out there.
Different cancer but my Mother ,Father and eldest son all had leukaemia My son has had a transplant and doing okay. My parents were not so lucky but had good lives and lived to 84 and 94 years.
I have multi-conditions and that has its own problems of departments not talking to each other!
I have lung cancer which has spead to my neck. I had chem and raidiotherpy and scan every three months. I have had numerous problems with appts for scans. Sending appt after consultant appt. Just useless. I had radio they on whole head as a preventative then more chemo. I am still have scans every 3 months but have fight to get them to include my neck. I met Clinical nurse for first time about month ago I have had cancer for over 2 years. If I phone them for help always answer phone. I thought they were to support me but have not felt support at all. I would like to find a group to talk. I live near kingswood bristol. Good luck to you!
Im going through same journey as you at the moment
After having a cough for a few months and loosing 3 stone in weight .i finally after spending weekend in bed thinking id got flu went to the drs on monday 30th oct 2017 ..id lost my mum to aggressive lung cancer in april this year and put weight loss and general fatigue down to stress and grief ..the dr listened to my chest andcreffered me for an 7tgeny xray following day ..31st oct.. i went for xray and was left eaiting to be told if i was ok to leave forcwhat seemed liked ages..the radiologist eventually came to see me in my cubicle and said you must see your gp today i asked why what have you found .and she said i cant tell but but its very important you see him today ..
I went to gp same day was told id got a large tumout on right lung and some infection ..was given strong antibiotics and told i was being referred to specialist ..3 days later i saw a specialist who showed me my xray ..a 4 cm tumour he said size of a golf ball..i then went from his office to be introduced to my macmillian nurse who is lovely ..i then was taken for breathing test and a ct scan and last friday had a broncopsy with a tissue biopsy and a wash biopsy ..an update phonecall from specialist yesterday after the mdt meeting and a pet scan booked in stoke on monday
Ive been told im looking at surgery to remove the tumour very soon ..as havent had prtscan till monday next week i dont know if its spread or what stage it is ..consquently scared but Nhs have been amazing i live in Telford shropshire and they have pushed out all yhe stops for me and krpt me informed along the way
I've been reading these posts from a few months ago, and find myself unexpectedly in a very similar position today, other than the hospital being in the other side of the country.
I’m 62 female & I found out I had lung cancer in May of 2017.I’m new to this site & only this site regarding my cancer. Mine was found during an mri of spine because of back pain. They told me I had a mad on lung so then I called my old onocologist & she set up pet scan & sure enough lung cancer. I would of never of found out if I didn’t get mri. I’ve been radiation & 2 different chemistry then they put me on Imunitherapy chemo & my tumors grew. 2 of them . Now I’ll be doing a different chemo on 21 of June for 3 hrs. Every 3 weeks until we do another pet scan. So I’m going to do the treatment & see if it helps but meanwhile I want to start CBC oil this time around. The dr. Told me I can refuse treatment & I guess just wait till I die. I’m not giving up on this fight. I’ve been thru too much to give up. Does anyone used cod oil & how are you now?
Hi Hollyboo hope you are doing ok. Ive came on here as ive had a cough for months. Eventually went to my Docs and was referred for lung test. They sent me for CT Scans. They said i have a small nodule on my lower right lung but weren't worried. Went back 6mths for another to check if it had grown but thankfully had not. They sent me for a Pet CT Scan as they didnt know what it was. Ive now had a letter 1 wk after Pet Scan to see a Dr at The Respiratory Dept. Imbstarting to worry a bit now about results. Would they not just send a letter saying they are not worried if it was ok. Mind is working overtime. Thankfully ive not had to wait long. It will be 2wks since scan xx
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