I think I have lymphoma
Discussion
Very glad to hear about the remission- that's fantastic news!
Have been reading this thread recently and have found it very useful without being too terrifying! Just had the same preliminary diagnosis of Hodgkin's Lymphoma but as I presented quite differently- initially with chest pain- so thought I'd post in case anyone else is similar to me and finds this.
38yo male, never smoked, barely drunk since uni, pretty fit until 6 months before this started then house renovations/ birth of first child took their toll and exercising dog 60m/day about it! Work as a vet but statistically we don't have an increased risk of cancer (just being booted!).
Had chest pain in October, monitored for afternoon then as getting worse looked at 111 website- who suggested phoning ambulance- so I reluctantly rang GP. Seen in 30mins, nothing obvious but if don't improve go to A & E. A & E did full bloods including for heart damage and pulmonary embolism, chest X ray and ecg. All ok. Told wierd virus most likely and sent home.
Chest pain reduced on Ibuprofen but still on and off quite sore next few weeks then intermittent. Caught a nasty cough off a friend's child (I've come to realise that they are basically biological warfare factories) in mid November and this was bad at the time and only slowly improved by after Christmas. But several other friends had it and had it persist this long- talk of whooping cough making a comeback (vaccination only lasts 10 years apparently).
January getting ready for putting lots of people up for daughter's christening, just coughing 10mins first thing in morning, chest pains very occasional. Caught another bug off friend's child at christening and got one bug after another (tonsillitis then flu like etc) and just coughing a lot of the time.
Went to the doctors, bloods and a sputum sample and a course of antibiotics. Bloods reasonable but borderline anaemic and similarly borderline raised inflammatory markers, whooping cough negative. Chest X ray and more bloods. Caught flu like bug right before saw doctor and ended up missing a day of work (fortunately into weekend).
X ray monday, managed a half day at work then flu took full hold and off work for rest of week and some of next. Had a brief look at the X ray and remember thinking humans are wierd, the mediastium (cavity containing heart/ oesophagus/ windpipe between lungs) looked wide.
X ray results the next Monday- shadow on the mediastium. Then the NHS shifted into overdrive in a way I didn't know that it could, CT scan next evening, results next evening- enlarged lymph nodes but mass in my mediastium 8 (
First biopsy Friday- endoscopic camera into lungs, ultrasound to find a lymph node then stick a smallish needle into it. Made the cough a lot worse but sedation and local made it better than you'd think! But just normal lymph node when came back.
Felt rubbish over weekend but managed to work the 4 days up until the next biopsy on the Friday (2 weeks paid sick leave for next 12 months now exhausted)
2nd biopsy CT-guided (basically a 3D X ray) lung biopsy. Not pleasant- they want you awake so if they hit something they shouldn't have you immediately tell them- but walk in park to reaction just post biopsy. This felt like multiple stab wounds over much of chest and back! Suspect that related to initially presenting problem and mass pushing on nerves in my chest. Sent consultant radiographer white as a sheet- he'd done over 500 and never had an issue like this, think he'd thought he'd killed me initially. Repeated CT ok and x rays ok, pain slowly improved. After a week biopsy inconclusive- most likely hodgkins lymphoma but need- you guessed it- another biopsy to be sure. But huge relief as differental diagnoses a lot worse!
Cough worsened a lot after biopsy and had a complication that stopped me taking ibuprofen and similar. Suddenly realised how sh*te I felt without, cough now keeping me up a lot of the night. Anyone who has a cough with lymphoma I'd recommend a big bean bag to get you half upright and acupuncture- only things that have been any help for me.
So swapped to haematology consultant for monday and possible bone marrow biopsy (I'm told things have moved on and they hurt less than the old fashioned way I've done them) and key hole surgery into mediastium to get another biopsy sample later in the week. At least that's under a general anaesthetic!
As has been said just trying to keep positive, having a six month old and a very supportive wife very helpful in this respect but aware we're in for a battle but one I'm determined to win. Afraid that ended up a bit linger than I anticipated!
Have been reading this thread recently and have found it very useful without being too terrifying! Just had the same preliminary diagnosis of Hodgkin's Lymphoma but as I presented quite differently- initially with chest pain- so thought I'd post in case anyone else is similar to me and finds this.
38yo male, never smoked, barely drunk since uni, pretty fit until 6 months before this started then house renovations/ birth of first child took their toll and exercising dog 60m/day about it! Work as a vet but statistically we don't have an increased risk of cancer (just being booted!).
Had chest pain in October, monitored for afternoon then as getting worse looked at 111 website- who suggested phoning ambulance- so I reluctantly rang GP. Seen in 30mins, nothing obvious but if don't improve go to A & E. A & E did full bloods including for heart damage and pulmonary embolism, chest X ray and ecg. All ok. Told wierd virus most likely and sent home.
Chest pain reduced on Ibuprofen but still on and off quite sore next few weeks then intermittent. Caught a nasty cough off a friend's child (I've come to realise that they are basically biological warfare factories) in mid November and this was bad at the time and only slowly improved by after Christmas. But several other friends had it and had it persist this long- talk of whooping cough making a comeback (vaccination only lasts 10 years apparently).
January getting ready for putting lots of people up for daughter's christening, just coughing 10mins first thing in morning, chest pains very occasional. Caught another bug off friend's child at christening and got one bug after another (tonsillitis then flu like etc) and just coughing a lot of the time.
Went to the doctors, bloods and a sputum sample and a course of antibiotics. Bloods reasonable but borderline anaemic and similarly borderline raised inflammatory markers, whooping cough negative. Chest X ray and more bloods. Caught flu like bug right before saw doctor and ended up missing a day of work (fortunately into weekend).
X ray monday, managed a half day at work then flu took full hold and off work for rest of week and some of next. Had a brief look at the X ray and remember thinking humans are wierd, the mediastium (cavity containing heart/ oesophagus/ windpipe between lungs) looked wide.
X ray results the next Monday- shadow on the mediastium. Then the NHS shifted into overdrive in a way I didn't know that it could, CT scan next evening, results next evening- enlarged lymph nodes but mass in my mediastium 8 (
First biopsy Friday- endoscopic camera into lungs, ultrasound to find a lymph node then stick a smallish needle into it. Made the cough a lot worse but sedation and local made it better than you'd think! But just normal lymph node when came back.
Felt rubbish over weekend but managed to work the 4 days up until the next biopsy on the Friday (2 weeks paid sick leave for next 12 months now exhausted)
2nd biopsy CT-guided (basically a 3D X ray) lung biopsy. Not pleasant- they want you awake so if they hit something they shouldn't have you immediately tell them- but walk in park to reaction just post biopsy. This felt like multiple stab wounds over much of chest and back! Suspect that related to initially presenting problem and mass pushing on nerves in my chest. Sent consultant radiographer white as a sheet- he'd done over 500 and never had an issue like this, think he'd thought he'd killed me initially. Repeated CT ok and x rays ok, pain slowly improved. After a week biopsy inconclusive- most likely hodgkins lymphoma but need- you guessed it- another biopsy to be sure. But huge relief as differental diagnoses a lot worse!
Cough worsened a lot after biopsy and had a complication that stopped me taking ibuprofen and similar. Suddenly realised how sh*te I felt without, cough now keeping me up a lot of the night. Anyone who has a cough with lymphoma I'd recommend a big bean bag to get you half upright and acupuncture- only things that have been any help for me.
So swapped to haematology consultant for monday and possible bone marrow biopsy (I'm told things have moved on and they hurt less than the old fashioned way I've done them) and key hole surgery into mediastium to get another biopsy sample later in the week. At least that's under a general anaesthetic!
As has been said just trying to keep positive, having a six month old and a very supportive wife very helpful in this respect but aware we're in for a battle but one I'm determined to win. Afraid that ended up a bit linger than I anticipated!
mclwanB have you had a diagnosis officially? Normally the bone marrow test is if you have a wonky white cell count? I'm wondering if you might have the same condition I have NLPHL Lymphoma? Mine is asymptomatic but apparently its quite hard to diagnose even for the lab. I had two biopsies one was an actual enlarged lymph node the other was an underarm biopsy after I lit the CT-PET machine up but second one was negative.
I've been on wait and wait for 2 years but am on guard for night sweats/weight loss etc
anyway I feel for you my second biopsy which was 2 week post diagnosis (on Christmas eve 2014) happed on the same day my wife gave birth to twins! Trying time but just crack on with it and do what needs to be done.
I've been on wait and wait for 2 years but am on guard for night sweats/weight loss etc
anyway I feel for you my second biopsy which was 2 week post diagnosis (on Christmas eve 2014) happed on the same day my wife gave birth to twins! Trying time but just crack on with it and do what needs to be done.
Provisional diagnosis Fridaypassion- they can see abnormal lymphocytes that look like Hodgkins lymphoma but they ran out of tissue to do all the stains is how I understand it.
Respiratory consultant said the haematology consultant might want to do bone marrow but normal haematology/ cells suggests to me too that they probably won't. Hoping that this doctor's strike- which I am wholeheartedly behind them for- doesn't delay diagnosis or treatment too badly.
One last question- since I got the diagnosis of the mediastinal/lung masses I am SO cross every time that I see someone smoking that I physicality have to stop myself going over and telling them off! Is that just me or a common reaction?
Respiratory consultant said the haematology consultant might want to do bone marrow but normal haematology/ cells suggests to me too that they probably won't. Hoping that this doctor's strike- which I am wholeheartedly behind them for- doesn't delay diagnosis or treatment too badly.
One last question- since I got the diagnosis of the mediastinal/lung masses I am SO cross every time that I see someone smoking that I physicality have to stop myself going over and telling them off! Is that just me or a common reaction?
I think if your whole cells are OK you should get away without the bone marrow. I've not had that done I was dreading it but am told it's not necessary. Treatment will vary I know other folks on the lymphoma forum with NLPHL have been put straight on chemo but they are happy to let me be for now.
Hodgekins as far as I know isn't particularly linked with smoking. You could get mad but where do you stop? People eating ham sandwiches? Biscuits? The whole world is toxic which is why this disease is so prevalent I think.
Hodgekins as far as I know isn't particularly linked with smoking. You could get mad but where do you stop? People eating ham sandwiches? Biscuits? The whole world is toxic which is why this disease is so prevalent I think.
mclwanB, if you want a chat let me know and I will give you my phone number. There is also a group on Facebook for it.
I hope this post hasn't scared you too much
Like you I never smoked in my life and before this was cycling 150 - 200 miles a week. I think the trigger for mine was a really heavy cold in October 2014, sent my white blood cells haywire.
Mine started with a cough, sounds exactly like yours, the cause was a tumour the size of a fist in my lungs. But after 1 session of ABVD chemo the cough had stopped.
Quote '' ultrasound to find a lymph node then stick a smallish needle into it'' sounds like a needle biopsy on a lymph node, you will probably need a full biopsy, ie remove a lymph node to check if you have Hodgkins or Non Hodgkins, as you said its under full anaesthetic, but doesn't really hurt, just kept in overnight for observation, its all to do with the cell type, as I'm sure you know from Googling.
What hospital are you at? Kings have been great for me, its just been a year of free drugs and hospital visits.
I hope this post hasn't scared you too much
Like you I never smoked in my life and before this was cycling 150 - 200 miles a week. I think the trigger for mine was a really heavy cold in October 2014, sent my white blood cells haywire.
Mine started with a cough, sounds exactly like yours, the cause was a tumour the size of a fist in my lungs. But after 1 session of ABVD chemo the cough had stopped.
Quote '' ultrasound to find a lymph node then stick a smallish needle into it'' sounds like a needle biopsy on a lymph node, you will probably need a full biopsy, ie remove a lymph node to check if you have Hodgkins or Non Hodgkins, as you said its under full anaesthetic, but doesn't really hurt, just kept in overnight for observation, its all to do with the cell type, as I'm sure you know from Googling.
What hospital are you at? Kings have been great for me, its just been a year of free drugs and hospital visits.
Edited by audikentman on Sunday 6th March 15:07
Thanks Audikentman, much appreciated. I actually have found the thread to be very reassuring in general. When you initially think you've been diagnosed with primary lung cancer you feel like celebrating anything else!
To be honest the whole smoking thing probably results from the query over primary lung cancer and is probably nothing new- just the severe chronic lack of sleep has reduced my patience!
I've had 2 biopsies so far- fine needle of a lymphnode and a core biopsy of the mass in the lung. Booked in for a keyhole biopsy of the mass itself in the mediastinum next week Didn't realise that you had a chest mass- you didn't have any chest pain, did you?
I'm in Shropshire so Telford/ Shrewsbury and now Stoke, for keyhole biopsy as so specialist, quite likely trips into Birmingham soon too for PET amd possibly chemo. Going to get very familiar with the local hospital facilities!
To be honest the whole smoking thing probably results from the query over primary lung cancer and is probably nothing new- just the severe chronic lack of sleep has reduced my patience!
I've had 2 biopsies so far- fine needle of a lymphnode and a core biopsy of the mass in the lung. Booked in for a keyhole biopsy of the mass itself in the mediastinum next week Didn't realise that you had a chest mass- you didn't have any chest pain, did you?
I'm in Shropshire so Telford/ Shrewsbury and now Stoke, for keyhole biopsy as so specialist, quite likely trips into Birmingham soon too for PET amd possibly chemo. Going to get very familiar with the local hospital facilities!
mclwanB said:
Thanks Audikentman, much appreciated. I actually have found the thread to be very reassuring in general. When you initially think you've been diagnosed with primary lung cancer you feel like celebrating anything else!
To be honest the whole smoking thing probably results from the query over primary lung cancer and is probably nothing new- just the severe chronic lack of sleep has reduced my patience!
I've had 2 biopsies so far- fine needle of a lymphnode and a core biopsy of the mass in the lung. Booked in for a keyhole biopsy of the mass itself in the mediastinum next week Didn't realise that you had a chest mass- you didn't have any chest pain, did you?
I'm in Shropshire so Telford/ Shrewsbury and now Stoke, for keyhole biopsy as so specialist, quite likely trips into Birmingham soon too for PET amd possibly chemo. Going to get very familiar with the local hospital facilities!
Really mean it if you want to talk at anytime let me know or if you are on Facebook look here To be honest the whole smoking thing probably results from the query over primary lung cancer and is probably nothing new- just the severe chronic lack of sleep has reduced my patience!
I've had 2 biopsies so far- fine needle of a lymphnode and a core biopsy of the mass in the lung. Booked in for a keyhole biopsy of the mass itself in the mediastinum next week Didn't realise that you had a chest mass- you didn't have any chest pain, did you?
I'm in Shropshire so Telford/ Shrewsbury and now Stoke, for keyhole biopsy as so specialist, quite likely trips into Birmingham soon too for PET amd possibly chemo. Going to get very familiar with the local hospital facilities!
https://www.facebook.com/groups/22423098653/
I thought I may have had mesothelioma. before I worked on the railway I worked in garage workshops when there was asbestos in brake linings and clutches, my uncle died of it so was actually relived to have H.L although its not the best thing to get the outlook is better than mesothelioma.
Also had terrible night sweats, at the time I thought it was either the cough/cold or I was having nightmares, I know it sounds weird, lol.
I had needle biopsy, and a full biopsy, both in my neck and a lot of blood tests, didn't need a bone marrow sample, although I know some people who have. I've seen the results and my white cell count was mental, no doubt being a vet you know far more about blood tests than me.
The PET scan showed far more tumours than I thought I had (I was certain I had 3, under my ear, top of my shoulder and armpit, all L.H.S) never knew a thing about the mass in my chest, no chest pain at all, although when I went for a bike ride I kept saying to friends I couldn't breath, felt like a belt was being tightened on my chest, not surprising really, the PET scan also showed the lymph glands on my R.H.S were also 'active'
Don't Google too much though you will scare yourself, and Google says everything is cancer, although with me it was 100% accurate
Edited by audikentman on Sunday 6th March 16:55
audikentman said:
Really mean it if you want to talk at anytime let me know or if you are on Facebook look here
https://www.facebook.com/groups/22423098653/
Thanks Audi that's much appreciated. Think I just need to get the diagnosis first- it might still be something else. Once I have I'd greatly appreciate a chat. https://www.facebook.com/groups/22423098653/
Edited by audikentman on Sunday 6th March 16:55
As regards Facebook groups that's great in principle but it's a closed group- not very secure- so if I'm in the position of needing a new job in the future (employers being understanding atm fortunately but who knows what the future holds) and my profession is very small and not known for adherence to equal opportunities policies! There are some closed forums and I will have a look at these once I know which ones to look at.
Saw haematology consultant today- seems very good/nice (has the department named after him which is probably a good sign) chemo booked on apro for a couple of weeks and 1st sperm banked... which was wierd! Anybody in a similar situation I'd advise trying to get this done as early as possible- they want three-four samples 3+ days apart and it's going to be a rush before chemo with PET scans (which no one seems to know if it's a problem with sperm) and the general anaesthetic biopsy somewhere in there.
Good to hear you sounding positive, thats part of the battle, also eating healthy. I bought a nutri ninja thingy, during the treatment when I could face food it meant I could sip on a blend of fruits that helped me get my 5 a day, also I made up a nice batch of minestrone soup with is another good booster, cut down on friend food, I was just going pescatarian (started off my N.Y.Resolution) and I've just kept it going.
I was really surprised how good the NHS were, this was my 1st dealings with them on this level in 50 years and I think they are great, from my Gp who 1st saw there was something wrong, to the specialists who treated me.
I forgot to mention the sperm banking. I was asked and said 'No thanks' I've dodged the bullet for almost 50 years I don't want to start now'.
Then at a follow up appointment last Thursday I was warned that I may still be fertile and if I didn't want children I still need to take precautions. It all seems bit of a blur looking back, as others warned me at the start, I think I was told what I had and then within 2 weeks I was having my 1st session of ABVD chemo. The expression you will hear (if you do have H.L) is 'tough but doable'.
1 good thing about cancer, not that there are many, are free prescriptions and cancer is a disability so it helps from the perspective of employment law. My company at a local level were great, I get 6 months full sick pay which really helped, although I don't think I could have done my job on all the drugs I was taking, also by being at home it helped to keep me away from anyone who was ill.
Thanks for the advice.
Nutrimatics were on offer last week and have been eating a helluva lot more fruit and veg. Hopefully it will help balance the codeine.
Second the hurrah for the NHS- they've been brilliant over this. A bit scarily so!
Fortunately I have been paying a fortune for income protection since I qualified so we just need to get over this month- which we can- & then we're ok. Very flexible in coming back assuming work can be.
Thanks for the advice re work and disability- I'm actually married to an ex lawyer so she'd found out all the relevant info. Are you back at work full time now?
Nutrimatics were on offer last week and have been eating a helluva lot more fruit and veg. Hopefully it will help balance the codeine.
Second the hurrah for the NHS- they've been brilliant over this. A bit scarily so!
Fortunately I have been paying a fortune for income protection since I qualified so we just need to get over this month- which we can- & then we're ok. Very flexible in coming back assuming work can be.
Thanks for the advice re work and disability- I'm actually married to an ex lawyer so she'd found out all the relevant info. Are you back at work full time now?
In terms of being positive supportive wife and six month old are great reasons, have a supportive family- miles away, unfortunately- and some great friends. I haven't actually had much of the "why me" except for that night I thought I had primary lung cancer and I was looking at my daughter and thinking that she'd never know me. After the realisation that it's lymphoma I've been very relieved and stayed that way. It's just random chance and I thank God I was born now and not 40 years ago when the outlook was grim.
I could also be positive because I ended up being off school and pretty isolated between the ages of 12-17 with what turned out to be a really odd type of sleep apnoea- I have experience of being pretty ill. I'm resigned to it but it doesn't mean that I will not fight it hard. Some fairly aggressive medical procedures were done during that and with the knowledge I have from my job Ive a pretty good idea of what Im in for. Hopefully the cough will clear up early in the chemo and the secondary back /sleep problems will become managable.
Friend suggested reading Viktor E Frankel's "Man's search for meaning"- a great psychologist and the story of how he stayed positive in a concentration camp despite terrible treatment and went on to found a new schools of psychiatry- logotherapy. Very uplifting. Going to have a fair bit of time for audiobooks I think. ..
I could also be positive because I ended up being off school and pretty isolated between the ages of 12-17 with what turned out to be a really odd type of sleep apnoea- I have experience of being pretty ill. I'm resigned to it but it doesn't mean that I will not fight it hard. Some fairly aggressive medical procedures were done during that and with the knowledge I have from my job Ive a pretty good idea of what Im in for. Hopefully the cough will clear up early in the chemo and the secondary back /sleep problems will become managable.
Friend suggested reading Viktor E Frankel's "Man's search for meaning"- a great psychologist and the story of how he stayed positive in a concentration camp despite terrible treatment and went on to found a new schools of psychiatry- logotherapy. Very uplifting. Going to have a fair bit of time for audiobooks I think. ..
mclwanB said:
Thanks for the advice.
Nutrimatics were on offer last week and have been eating a helluva lot more fruit and veg. Hopefully it will help balance the codeine.
I also lost the taste for certain foods and drinks. No more builders tea used to have 10+ cups a day, green tea now. Nutrimatics were on offer last week and have been eating a helluva lot more fruit and veg. Hopefully it will help balance the codeine.
mclwanB said:
Second the hurrah for the NHS- they've been brilliant over this. A bit scarily so!
Yeap the really step up when you need them, take all the drugs, advice and phone numbers that are offered to you.mclwanB said:
Fortunately I have been paying a fortune for income protection since I qualified so we just need to get over this month- which we can- & then we're ok. Very flexible in coming back assuming work can be.
You will get over this month and the next year, and come out the other side thinking Wtf was that!mclwanB said:
Thanks for the advice re work and disability- I'm actually married to an ex lawyer so she'd found out all the relevant info. Are you back at work full time now?
Could be handy with your wife, you never know what will happen. Yes I'm back at work, been on light duties since my chemo finished, I then went away to Turkey for some convalescence (paid for by a benevolent fund I pay into) then came back, pretty much did nothing except book on and go home, then during my radiotherapy work let me come in book on and go for treatment. December I was away in South Africa for a month (which was booked up before I even go ill) then this year so far the company doctor has kept me on light duties, with 2 other drivers (1 had throat cancer and 1 had Non Hodgkins Lymphoma) training other staff up.mclwanB said:
In terms of being positive supportive wife and six month old are great reasons, have a supportive family- miles away, unfortunately- and some great friends. I haven't actually had much of the "why me" except for that night I thought I had primary lung cancer and I was looking at my daughter and thinking that she'd never know me. After the realisation that it's lymphoma I've been very relieved and stayed that way. It's just random chance and I thank God I was born now and not 40 years ago when the outlook was grim.
Sounds a good enough reason to me to stay positive. Same situation as you was almost a relief to be told I had Hodgkins Lymphoma and not mesothelioma which I feared.The outlook is good now, and improving all the time, with plenty of different drug combinations if the 1st 1 doesn't work. My 1st blood test was 16th Febuary 2015 was told I was in remission 12th Febuary 2016, my last day at work properly was March 28th 2015, I'm away from 11th March for 2 weeks and strangely I have a company medical on March 28th 1 year to the day where I think I will be put on a phased return to work.
If I can give you 1 piece of advice it will be, don't worry (too much) its going to be ok.
Daytime Tv, Ebooks will be your friend and I started doing Lego and Airfix models when I had the energy.
Was hoping to have some positive news by now but it doesn't seem that I'm that 'lucky'!
After singing the praises of the NHS am unfortunately no longer doing so strongly. Had appointment with surgical consultant at the hospital with the specialist cardiothorac clinic, told before appointment that surgery would be day after but was not. Left in limbo-chased and got haematology consultant to chase, eventually got a slot Wednesday before last. Post op told mediastinoscopy only was performed, possibly because of the issue with intensive care beds I've discovered. Told on Monday all normal tissue, need to have another ga to have the more invasive VATS biopsy, no indication of when that is planned despite haematology consultant chasing up multiple times this week- left in limbo again, rather than starting chemo today now there's a definite shadow of doubt cast over the previous provisional Hodgkins lymphoma diagnosis. Could still be or could be something worse or just different. Wife seriously struggling with being left in limbo with no diagnosis and the possibility of a phone call to come in at short notice to drive to a hospital an hour and a half away for surgery with all the logistics that entails with a 7month old.
Have contacts that could get me in to an alternative hospital locally but the incredibly antiquated way notes are dealt with in the NHS would mean this would probably delay surgery further and their itu is probably similarly full. Bizarre for a vet- we'd have all notes imaging and tests emailed off the same day. Similarly BUPA would have a similar delay with the added complication that only 2 BUPA hospitals have intensive care facilities (which shouldn't be needed but need to be in place in case they are). All the medical professionals I have spoken to- including the friends- agree that there is nothing else to be done really, McMillan agreed with that assessment. I dont suspect that anyone has a brainwave?
Am in the system for counselling for us but no time frame for that either. My wife is just very stressed about the lack of diagnosis and therefore prognosis and no timeframe for getting one. Still breastfeeding sbo she's really unconvinced about happy pills. She is convinced that the delay will give the tumour more time to grow/ spread and reduce the outcome significantly. I can't say that definitely isn't the case but hopefully not!
Moral of the story is you have to chase, chase and chase and call in favours sometimes with the NHS. And even then it might be a slow process even with an urgent condition like cancer. It's a real symptom of how the whole institution is being ruined by successive poor government handling.
After singing the praises of the NHS am unfortunately no longer doing so strongly. Had appointment with surgical consultant at the hospital with the specialist cardiothorac clinic, told before appointment that surgery would be day after but was not. Left in limbo-chased and got haematology consultant to chase, eventually got a slot Wednesday before last. Post op told mediastinoscopy only was performed, possibly because of the issue with intensive care beds I've discovered. Told on Monday all normal tissue, need to have another ga to have the more invasive VATS biopsy, no indication of when that is planned despite haematology consultant chasing up multiple times this week- left in limbo again, rather than starting chemo today now there's a definite shadow of doubt cast over the previous provisional Hodgkins lymphoma diagnosis. Could still be or could be something worse or just different. Wife seriously struggling with being left in limbo with no diagnosis and the possibility of a phone call to come in at short notice to drive to a hospital an hour and a half away for surgery with all the logistics that entails with a 7month old.
Have contacts that could get me in to an alternative hospital locally but the incredibly antiquated way notes are dealt with in the NHS would mean this would probably delay surgery further and their itu is probably similarly full. Bizarre for a vet- we'd have all notes imaging and tests emailed off the same day. Similarly BUPA would have a similar delay with the added complication that only 2 BUPA hospitals have intensive care facilities (which shouldn't be needed but need to be in place in case they are). All the medical professionals I have spoken to- including the friends- agree that there is nothing else to be done really, McMillan agreed with that assessment. I dont suspect that anyone has a brainwave?
Am in the system for counselling for us but no time frame for that either. My wife is just very stressed about the lack of diagnosis and therefore prognosis and no timeframe for getting one. Still breastfeeding sbo she's really unconvinced about happy pills. She is convinced that the delay will give the tumour more time to grow/ spread and reduce the outcome significantly. I can't say that definitely isn't the case but hopefully not!
Moral of the story is you have to chase, chase and chase and call in favours sometimes with the NHS. And even then it might be a slow process even with an urgent condition like cancer. It's a real symptom of how the whole institution is being ruined by successive poor government handling.
Edited by mclwanB on Thursday 24th March 22:00
Edited by mclwanB on Saturday 9th April 14:41
I have just today had a definite (if not detailed) diagnosis- definitely Classical Hodgkin's Lymphoma. Having the full details- stage etc- on Monday. I'm assuming from the difficulties in diagnosis it is early stage.
It's an immense relief- out of the possible differential diagnoses of the invasive mass I've known I have in my chest for the last 8 weeks it is has by far the best prognosis. It may seem bizarre but we're going out to dinner tonight to celebrate!
I'm going to go into a fair amount of detail in case someone else in the same situation finds this and needs to know how to play the system to get a diagnosis. If anyone is in the same situation PM me if they want some advice.
Since the last post we chased and also got the haematology consultant to chase the surgery team at the specialist centre and got a letter sent on the Thursday for the surgery on easter Saturday to come in the following Tuesday- Royal Mail must've been affected by all the prayer I know has been going on!
Rang on the Tuesday and had a long discussion as to whether there was a bed but managed (after 6hrs of back and forth calls and generally reminding them this was urgent) to get admitted on the Wednesday for surgery the same day. Stayed over in a hotel night before in case of mishaps- could not afford to miss.
Went down at 330pm to be told by the specialist that he was planning on just removing some different lymph nodes during the VATS surgery (as had been done during the mediastinoscopy and these nodes had been normal) and possibly a sample of the mass itself. I was so shocked I could not initially say anything but asked the nurse to call him back to see me before I went down. I explained quite how important getting a diagnosis was at this stage both for physical (in particular I have been demonstrating progressing heart signs due to tumour related compression on the great vessels) and psychological reasons. If this biopsy was negative repeat VATS surgery would need to be left at least 4 weeks by which time I'd have become very stressed, my wife wouldn't have coped and potentially neither would my heart!
I'd been left off nonsteroidal painkillers preoperatively and had been in so much tumour related chest pain I'd had been given multiple oxycodone (more potent than morphine) doses so I might not have been that good at understanding what was said. However the surgeon said post op he got 6-7 good samples from the mass itself so that will have contributed to getting the result.
If anyone younger who is moderately fit and doesn't smoke is down to have VATS surgery I'd say that recovery hopefully won't take as long as suggested. I am 9 days post and the surgery related pain is minimal and I'm hoping to be allowed to drive and lift weights up to my 7month old when I'm seen by the surgical consultant next week. For reference it is often 12 weeks for some older/less fit individuals before they are mostly recovered. Tbh I didn't have half a lung removed like some people having the surgery and I am still on oxycodone/paracetamol/increased dose ibuprofen for the severe (when uncontrolled) pain caused by the mass compressing nerves in my chest/back.
I am well aware that chemotherapy isn't going to be a walk in the park but knowing a diagnosis and particularly prognosis is great if unreal. I now know that it will hurt and be very unpleasant but the stats- as well as my unwavering determination- are that I will beat it!
It's an immense relief- out of the possible differential diagnoses of the invasive mass I've known I have in my chest for the last 8 weeks it is has by far the best prognosis. It may seem bizarre but we're going out to dinner tonight to celebrate!
I'm going to go into a fair amount of detail in case someone else in the same situation finds this and needs to know how to play the system to get a diagnosis. If anyone is in the same situation PM me if they want some advice.
Since the last post we chased and also got the haematology consultant to chase the surgery team at the specialist centre and got a letter sent on the Thursday for the surgery on easter Saturday to come in the following Tuesday- Royal Mail must've been affected by all the prayer I know has been going on!
Rang on the Tuesday and had a long discussion as to whether there was a bed but managed (after 6hrs of back and forth calls and generally reminding them this was urgent) to get admitted on the Wednesday for surgery the same day. Stayed over in a hotel night before in case of mishaps- could not afford to miss.
Went down at 330pm to be told by the specialist that he was planning on just removing some different lymph nodes during the VATS surgery (as had been done during the mediastinoscopy and these nodes had been normal) and possibly a sample of the mass itself. I was so shocked I could not initially say anything but asked the nurse to call him back to see me before I went down. I explained quite how important getting a diagnosis was at this stage both for physical (in particular I have been demonstrating progressing heart signs due to tumour related compression on the great vessels) and psychological reasons. If this biopsy was negative repeat VATS surgery would need to be left at least 4 weeks by which time I'd have become very stressed, my wife wouldn't have coped and potentially neither would my heart!
I'd been left off nonsteroidal painkillers preoperatively and had been in so much tumour related chest pain I'd had been given multiple oxycodone (more potent than morphine) doses so I might not have been that good at understanding what was said. However the surgeon said post op he got 6-7 good samples from the mass itself so that will have contributed to getting the result.
If anyone younger who is moderately fit and doesn't smoke is down to have VATS surgery I'd say that recovery hopefully won't take as long as suggested. I am 9 days post and the surgery related pain is minimal and I'm hoping to be allowed to drive and lift weights up to my 7month old when I'm seen by the surgical consultant next week. For reference it is often 12 weeks for some older/less fit individuals before they are mostly recovered. Tbh I didn't have half a lung removed like some people having the surgery and I am still on oxycodone/paracetamol/increased dose ibuprofen for the severe (when uncontrolled) pain caused by the mass compressing nerves in my chest/back.
I am well aware that chemotherapy isn't going to be a walk in the park but knowing a diagnosis and particularly prognosis is great if unreal. I now know that it will hurt and be very unpleasant but the stats- as well as my unwavering determination- are that I will beat it!
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Glad you finally got the result you was strangely hoping for.
Try not to dwell on it too much and enjoy the weekend, you have a tough few months ahead but remember its going to be all-right and you wont die.
I will be in touch
Glad you finally got the result you was strangely hoping for.
Try not to dwell on it too much and enjoy the weekend, you have a tough few months ahead but remember its going to be all-right and you wont die.
I will be in touch
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