my dad was diagnosed with cancer of the larynx in september 2008. they told us it was a small T1 tumor and said 20 sessions of radiotherapy would give him a 95% chance of being cured. he finished the 20 sessions late november, and continued to go downhill from then on. he was in hospital on christmas day, and continued to be in and out of hospital even for his birthday in feb this year. he had a second biopsy at this time. they told us the cancer had got bigger, the radiotherapy had failed. a week later he had an emergency laryngectomy (and neck dissection?) we were told this was his only hope. his laryngectomy was on the 3rd of march 2009. two weeks later we received the biopsy results, and all sat in a room whilst his ENT surgeon went on about how he had actually had three tumors removed, one of which was paper thin to his artery, it had also affected his lymph nodes and buried into his thyroid which they removed too. but he went on to tell us that our dad's cancer was ALL GONE. we couldn't really believe it. over the following weeks we had to prise information out of them as we still weren't completely sure of what they had told us, not believing it. his ENT doc then told us he was to have 6 further weeks of radiotherapy IN CASE there were any remaining cells on the artery. his oncologist then told us there ARE cells, and that he MUST have radiotherapy. so we spent these past couple of months pursuading dad to go through with the radiotherapy, he tried to have it but he couldn't lie down for long enough to finish simulator images for the planning. he was sent back to his oncologist to see if he could have it done sitting up??? we never thought he could, and they didn't even talk to us about it. they went on to withdraw the radiotherapy saying "the window of opportunity has passed" ???! my mum and myself and brother questioned them on several different occasions about other options, further treatments such as brachytherapy, cyber knife, drug treatments, chemo etc etc as we had tried to research it ourselves. but they would not discuss these options with us, simply discarding them and saying there is no other treatment bar radiotherapy (which at 11 weeks post op they said he can no longer have). during these meetings they had also mentioned that if dad's cancer did come back they'd give him chemo to keep it under control. on tuesday of last week we asked for his prognosis as we were entirely unsure where we stood now, having had the treatment option withdrawn. his oncologist gave us two to three months... tuesday of this week (yesterday) my mum and dad went to see his ENT doc for swallowing difficulties, and they were taken by surprise when told the following (written down in a notepad by my mum as she was too in shock to take it in and respond, wasn't sure she had heard right but dad confirmed this was what they'd said):

- radiotherapy, his surgeon seems to think this is still an option
- BUT it's not going to happen
- oncologist thinks tumor is already coming back
- but they said they will not look anymore to see if it is progressing BECAUSE dad didn't have the further radiotherapy?!!!!!???!
- no radiotherapy so they have withdrawn all further treatment and further surgery, including the chemo they offered us, the only thing they will do now is give him drugs for pain relief when it comes to the end


we are desperate for help, we are awaiting an appointment at the royal marsdens for a second opinion, but we are afraid they will treat us in the same way and not discuss anything with us. we feel there must be something that can be done (as has been confirmed by dad's oncologist/surgeon but we are being denied this?!). we can't understand what is going on, my dad is 44 years old and i am the eldest of his 8 children, i am 21 this year and my youngest sister is just 4 months old, he hasn't had the opportunity to enjoy any of her life as he has been too ill. we simply want someone to be honest with us, and give us the answers we need to aid us in our fight to keep our dad alive.

thanks for taking the time to read, please don't hesitate to give us your advice or help with anything as my mum spends hours trawling the internet not even knowing what she is looking for, just knowing that someone out there must know something that can help us. Frowner

edit - forgot to mention that we were also recently told that actually his cancer was just a big mass wrapped around his artery ??
Original Post
Hannah, what a mess of a situation! I would have to tell you to go to another ENT Doctor and start again! Get a second opinion and a third and a fourth until you find someone who is willing to help you! I know your healthcare system (insurance, etc.) is different there then here in the united states, but there must be other doctor's that you can see about this.

It really makes me mad hearing about what's happening to your father. My own doctors (ent, radiologist, onocologist, etc.) were wonderful and are always there for me.

I've never heard of a Doctor refusing treatment to a patient just because the patient decided against one course of treatment. The Doctor's are suppose to work with you on your treatment plan!

Good luck!!!!! I hope you find a wonderful doctor for your father and that things work out for him! Keep in touch with all of us, Cricket
Hi Hannah
Do not stop hastling these people. You must take the offenseive - get their phone numbers (their secreataries/ departments and whatever you can) and keep ringing - do not wait for letters - ring - do not wait for anything - pester them.
I am sure they are doing their very best and are wonderful doctors - but patients at the end of the day are just names on lists - just numbers - and are easily forgotten/ sidelined. This is not a criticism of the doctors - it is just the way it is. Take the offensive and keep ringing them until someone agrees to see you/ talk to you/ refers you on or whatever - and even then don't sit and wait start hastling the next person on the list!
I am speaking from experience and my wife has rung around for me on MANY MANY occassions. You feel a bit pushy and they will tell you you are being but hey this is life and death we are talking about so who cares what they say!

Very best of luck

Tony
Hi Hannah

I am really sorry for the crap that your family has been going through.

I understand your concern about going to the Royal Marsden, but I urge you to keep the appointment. Take with you all of the notes and documentation you have; if you can get a copy of his your dad's hospital chart that'd be great. From what I've read on this site, Royal Marsden is very good; I just hope that your dad's current doctors haven't mucked about too long for them to do anything for him.

Take Tony's advice--don't give up. Don't wait for the docs to get back to you. Do whatever you have to, just don't think that you're pestering or bothering anyone you talk to--it's their job to help you.

Your situation actually has an unfortunately familiar ring to me. Back in the early '60's my paternal grandfather broke his leg. During a doctor visit he complained of a sore throat. The doctor reportedly said "what are you here for? Your leg or your throat." His was a pretty fast cancer; we lost him a few days after my sister (his first grandchild) was born. I truly hope that this turns out better for your family.

Julia
Dear Hannah,

I am so sorry to read about the terrible trauma that you and your family have been through. I totally agree with Tony, pursue the appointment with the Marsden and don't be frightened to phone around and hassle to get an appointment quick.

I still think taht you deserve a coherent explanation from the team that has been treating your father about what exactly has happened and why. He should have received more support when he went into get the second lot of radio and felt he could not lie down for the planning session.

My experience has been that although the inidvidual doctors and nurses etc at the NHS are great the coordination of treatment leaves much to be desired and patients are likely to see several different oncologists and memebers of surgical teams who sometimes have quite different opinions on treatments. This makes it very difficult for lay people patients and family who are already worried and frightened to really understand what is going on - their options etc. I have only recently learned that there should be an oncology nurse specialist to coordinate care and to help patients and families understand and seek more support during treatment. I would thus advise you to try your dad'd hospital and find out whether there is such a person and demand to see them for some answers. You may also like to call PALs patient advisory liaison service and ask them to help you negotiate with the hospital. I would call them and read through your above post and ask them to help you get clearer answers.

When I was at the end of my tether I called my PALS office and explained our situation and they agreed that we had cause to complain and offered to step in and help very quickly. I think the number below maybe your nearest service, but if not try the hospital switchboard.

Good luck and tell us how you get on.

Cathy

Phone: 0116 258 3100
Write to: PALS Office
Glenfield Hospital
Groby Road
Leicester, LE3 9QP
thank you all for your support and advice, it is appreciated. i'm glad we aren't the only ones who feel that this is unacceptable, and we will not give up.

we still have not had the appointment for royal marsdens come through, but we have on recommendation booked an appointment with our nearest bupa clinic which is this coming wednesday. as they won't have dad's notes, and as the hospital should not have had any contact with these doctors, we are hoping to get an honest and completely individual opinion on my dad's case, we are just keeping our fingers crossed that they will assist us in finding a private treatment that is available, before it is too late.

on a better note, my mum got in contact with some people who support patients (outside of the hospital and loros etc) and dad has now been provided with an electric hospital type bed at home and is sleeping better. also they are putting in a stair lift and a bath lift for him very soon.

i will keep you all posted on what comes of the appointment on wednesday Smiler fingers crossed Confused
Dear Hannah ,I agree with the rest of the forum ,this is a total mess and not enough information for you to understand or deal with .Communication needs to be addressed quickly here .In reading your post the only sense I can make from them offering RT and then taking it back is the window of RT which has been withdrawn could be to do with the fact of where the tumour is positioned or attached ,which you said was around the artery .This can be a huge problem as more RT can cause the artery to Blow which can be life threating and deemed a risk not worh taking ,the reason I am saying this is because my husbands cancer came back and we were sent to Royal Marsden for 6 weeks for a second lot of RT but of IMRT types because my husband had 35 confromal plus Chemo alongside previously as his first agressive treatment .They found by accident a few years later while doing salvage clear up that some more cells had grown same place underneath but were small.Royal Marsden was only place who could do this type with the IMRTas at that time Scotland didnt have it.The surgical approach gamma knife and brachytherapy etc were discussed but scans etc showed they were not an option because his carotid artery is involved.He had to travel down for the set ups and computer simulator and mask etc as we were told this had to be done quickly because they did not want any more growth in area around artery so I think sometimes time when it is a second recurrence it can be an issue .I was also made aware if a patient has had recent surgery and time still a bit soon after this they will not proceed with RT because once again it can cause more problems with healing and tissue which has been surgically removed leaves area tender and prone to heamorrage so there can also be an issue with this .

The problem with the palliative chemo is that in some cases they will not do this unless a biopsy is done first and again due to a patients location and previous surgical or RT damage this can be a problem also .We are currenty awaiting news of this but were told by our ENT specialist he was not happy to do biopsy as he was concerned about this artery and also haemorraging from original area which is in a poor state becuase of so much RT and his tumour is wrapping around it.I think maybe this may seem be confusing now ,but the real point is there have been too many opinions given and not enough explanation of what and why tratment plans have been offered and then been recinded .

It is impossible to accept what is going on here and the lack of communication you are receiving needs to be addressed so I would follow the guide lines and phone numbers given to you by the forum memebers and try and get an appointment sorted out .Bupa I am sure will be excellent but if they have not got your fathers notes, again will take time but I am sure they can get them faxed and they may start from beginning to build up their own diagnosis and prognosis .

Unfortunately when things involve a surgeon ,oncologist and an Ent specialist it seems to take even more time for them to get together and liase over the best treatment plan and options safely available. If a patient has now reached the stage of curative treatment not being an option palliative treatment in the form of chemo can in certain cases be deemed to be more life threatning and not beneficial.If this is the situation pain and symptom control management has to be set up for you and you should have been talked through this clearly .This on many occasions can give longer life and better quality rather than continuimg with more health deterioating treatment which will ultimately cause more ill health and poorer quality of life with no cure or benefit ,so the fine line of which planning to implement in your dads case has obviously become a situation with too many opinions and not enough explanation and definatley no help or liason set up for you which is appaling .

This situation of cancer returning agressively post 2 sets of treatment is what we have experienced lately and sadly have to accept but have been told and retold and everything explained .I know for our part we went through anger and not really taking everything in properly regardless of them trying to explain clearly and has taken some time to understand which they have done and are being very caring and have set things up for us. So when you go to see them or Bupa please write everything down in clear bullet headings so you don't leave remebering something else you have forgotten. Your family and your dad need to be assured of what and who is going to be your life line and help when issues arise and you need better pain and symptom management.Although they have fired time lines at you they are not God and with good care and management a lot of people are still here telling their story and having a life .We asked how long Paul may have and were told that with good care and management they did not know and also at this point could not even say what other problems may arise, would depend on growth path of tumour and would address each sympton and help manage things as they occur .When we left the last catch up consultation Paul's parting words were about the man who was in the newspaper who was told he had but a few months and placed a bet with a bookies for the following year and has been in to collect his money and has now placed another one for next year so sometimes they are not best placed to ascertain someones life span in weeks and months.

Hope I have not confused you. will be thinking about you and your family.Let us know how things progress .

Bell.
sorry i have not updated you all yet, and thanks for all of your advice and suggestions. i will give you a quick overview of what went on...

we had a meeting at spires (bupa) and the doctor suggested electron beam therapy so that he could sit up a bit (as he had a problem with lying down).
we also had our meeting at royal marsdens on tuesday of this week. we were seen by chris(?) nutting. he was very honest with us, which is all we wanted. he said there is nothing that can be done by anyone to make any significant different to the quality of my dad's life, or the quantity. he discussed with us several things and explained why they would be of no use, chemo etc. of course we were very upset, sort of disappointed after we've been led to believe there was something out there, but also grateful that someone finally gave us their honest opinion. they also told us that in their opinion the bupa doctor advised electron beam so as we didn't go home empty handed as this was a 200pound 40 minute appointment, and to avoid the hospital as much as possible as it would be wasting time...
and after all of that our hospital (leics royal) rang us twice today to ask if dad was coming to planning for electron beam therapy next week... to which my mum replied no, he is not..!!

i just came on to ask a quick question - dad's been prescribed Lorazepam and i believe he is using it for pain aswell as anxiety. he's only been taking it for a few days, 3 a day. in the past few days his face, lips, neck area have swollen up to be huge - we have read that this may be an allergic reaction to the Lorazepam - can anyone confirm this or give an opinion? he is very worried about the swelling, as are we.
Hello Hannah, I am sorry to hear the news ,like everyone on the forum we did hope there would be a more positive prognosis.Dr Chris Nutting is top of tree regarding cancer in this area and that was who my husband saw last year when we travelled to London for a second battle with this dreaded disease.

Regarding the Lorazapam it is certainly possible it may be causing a reaction with swelling but sometimes it can also be due to an infection in area even under skin or elsewhere . This needs to be checked out. I would phone your GP or if you have a liason nurse through hospice etc promptly, as swelling around face and neck needs to be addressed .They can advise over phone or I would most certainly think pay a house call .Hope you have already phoned and had someone out to see your dad .It is never a good idea to stop medication prescribed until you have been told to do so by doctor .

Hannah it is such a difficult time and it is important to have the relevant phone numbers handy for either GP or hospice .A good talk with you dads GP now would help set up things you may need and also give you the extra support when unusual symptoms appear .

I am sure this is all underway .We have found the pain control team from our local hospice the best and they work closely with our own GP. which means they come out once a week to just check all is ok and if anything needs addressed or changed they phone our GP and get scripts etc organized .If we have any other worries I phone our doctor and then he phones us back and either comes out or advises what needs to be done .

This is such a minefield to navigate to have the best care for your dad .

Please keep us updated.We are sadly in a similar position and being able to lift the phone at anytime to get immediate help or explanations is so important .

Thinking of you ,
Bell .
thank you, bell.

we did feel like he was the best, if ever i were to come across anyone in this situation in my lifetime i would say go straight to royal marsdens and see what they can do... but it is too late for regrets or could have beens.

as for last night, we called the out of hours doctors service and he said it was fine because dad was having no breathing difficulties as a result of it (around 3am). at 6am dad woke us up with a note "help, 999", he was tight and i think he felt he couldn't breathe. the paramedic came and injected adrenaline, gave him steroids and piriton. he was taken in and they gave him more of the same and observed him for 4 hours before sending him home with steroids and piriton. the swelling decreased greatly, he is still puffy/swollen but nothing compared to what it was, and we know to expect this as a result of the op anyway.

to be honest we have no support as a family, or even for dad. i'm the eldest (20) of 8 children, my youngest sister is 5 months old. we have a loros nurse who is thoroughly useless, she visits from time to time and is no help whatsoever, she just talks about medication but doesn't end up in any different place to where she started from. there's a nurse who pops in every week or so but even they failed to turn up this week when arranged to come on friday. a few weeks back we had people in who arranged dad a hospital bed for home, a stair lift, bed lift and bath lift. we thought they were doing well as it turned up a couple of days later, but still no stair lift - have a feeling by the time it arrives dad will no longer be with us.

it feels like there is nobody there to guide us through or advise us with anything useful. speaking for myself i am very scared about what is going to happen, and how soon it is going to happen. i know my mum is too. how we see it is that if he survives long enough he will be in a state with an open sort of tumor?? and if he doesn't then his tumor will suffocate his artery and i can't begin to imagine what that will be like.... if anyone has help on what to expect or what to think etc it would be really helpful...

we received a letter from royal marsdens today, i will type it up onto here in a bit.


-- copy of letter sent from royal marsdens to dad's gp

Thank you for referring this gentleman to Dr Nutting and who Dr Nutting and I saw today. He was accompanied by his wife, eldest daughter and brother. We saw him without any formal details of his treatment to date.

Mr Brown first presented with a 4-month history of hoarseness in September 2008. After several courses of antibiotics he was referred to the ENT service where a biopsy showed a T1 malignancy. We haven't seen any histology reports. In September 2008 he was referred to Dr S at Leicester Royal Infirmary and was offered radical radiotherapy in 20 fractions, which he finished on the 20th November 2008. Subsequently he had ongoing problems with a cough productive of bloody sputum and lumps of tissue and had several inpatient admissions. In February 2009 he underwent a EUA and CT scan and was told that the tumor had got bigger and invaded local structures. On the 3rd March he underwent salvage laryngectomy. Tumor was presented on the carotid, invading the thyroid and had metastasized to regional lymph nodes. He saw Dr S to consider post-operative radiotherapy but this was not felt to be feasible. He subsequently saw a different oncologist in the private sector who raised the possibility of electron therapy, but this has not been taken any further. They have read about Cyber Knife treatment and various experimental drug options.

Mr Brown is a 44 year old who has a 45-pack-year history of smoking roll-up cigarettes and consequently has emphysema that renders him oxygen dependent (i have to point out here that this is not the case, he isn't oxygen dependent was given the oxygen as a safety blanket for his panic attacks when returning home from a hospital stay) and frequently house-bound. He also has a history of what sounds like osteo-arthritis in multiple joints.

He takes a variety of daily medications, but swallows only small amounts of fluid each day. He requires help with washing, dressing and daily care (must also point out here that this is not totally true, it is only in the past couple of weeks he's needed assistance with day to day things like medication and bathing). He has 8 childrenl the youngest of whom is under 2.

Examination revealed extensive tumor throughout the neck. He was short of breath and required oxygen therapy. His performance status we estimate at 3.

Dr Nutting explained to Mr Brown that further radiotherapy would not offer significant palliation or prolongation of life and unacceptable levels of toxicity. He feels that on balance the same applies to chemotherapy and that any drug treatment we were to offer here would be similar to that, which he would be offered in Leicester in the first instance. We therefore have no treatment options to offer him. I understand that he has already been referred local to occupational health and palliative care services and it seems appropriate that symptom control is conducted largely in the community for as long as possible. I have not arranged to see Mr Brown at the Royal Marsden Hospital again. I am sorry that we have not been able to offer him any active treatment options.


does anyone know what the performance status is?? there are a few things in this letter that are not strictly correct concerning my dad, which worries me as it seems they have put him down as being almost incapable of anything, or maybe i am just not seeing it...
Hannah you need help now from people who deal with terminal patients on a day to day basis,i would strongly recommend that you ask your gp to refer your dad to the palliative care team and phone macmillan or marie curie .You cannot do this alone and theses people are wonderful,caring and support the whole family.

love liz
Hello Hannah ,I understand how upsetting and vulnerable you feel at moment. been experiencing this also .As cookey says you now need to get a support team set up immediatiely .The care you have been currently receiving is not doing this for you .Bring your GP in immediaitely as he can set up a proper palliative care team service where you have a daily person to liase with ,the hospice or Macmillan team is best ,you could even phone Macmillan nurses in your area yourself .If the palliative care team have let youdown discuss this with him.But would definately start with your GP and be firm !!.

Have read the letter and I assume the performance status is a measure of what they feel your dads general health and his daily capabilities are ,a bit like when you go to accident and emergency they give a number of 1 to 10 to prioritise who needs attention first .

He has been clear about your dads diagnosis and future prognosis .Sometimes they do get things a bit wrong but in many cases people in the position are entitled to DLA, disabled allowance and if applying for this the patients daily health care needs to be clearly explained. with your dads situation he is now under the clause "special case" and can be processed quickly should you wish to take advantage of this .It is an entitlement that is avcailable to everyone in this position and can help with extra care and bills etc .This letter would be needed to ascertain your dads condition and also what amount of care he needs and may need and Dr Nutting should have also been sent to your doctor .

This is also something that should have been explained to you .Paul was told all this when he was diagnosed with recurrence and sadly the recent situation we have found ourselves in .We are alright reagrds finances and getting all the help we require but it is helpful to know that this is available and can be of help .

Unfortunately they can't be clear as to how things will progress and don't explain too much as it can cause fear and expectation of something that may not happen ,this is why you need to have someone at the other end of the phone who is totally aware of your dads circumstances .We have asked this question as what to expect on numerous occasions now,and do not get any answers they say they can not be clear and we need to deal with things as they arise.Unfortunately symptoms need to be managed on a daily basis .

Please get this reviewed with your doctor so you have a number to phone day or night with the proper people who have your dads notes and can be of better assistance .

Let us know how you get on Hannah .

Thinking about you .

Love Bell.
Dear Hannah,

I am so sorry to hear your news, but glad Liz and Bell have been able to offer you such useful practical advice about getting the support that you and your family need.

I just wanted to drop in to say that it sounds as if you are doing a brilliant job supporting your dad and mum in the most difficult of situations. Make sure you take care of yourself and find some time to see your friends.

Warmly,

Cathy
thank you liz, bell and cathy - all of your help is very much appreciated.

at the moment we are trying to find out about macmillan in our area - we haven't had our district nurse in for over a week now, mum has rang up today and apparently one of them is on holiday and one is ill... mum did get our gp's mobile phone number this morning in case anything does happen and we need someone who is aware of the situation urgently, but this is just temporary until we have someone better to rely on for this help. we are also trying to find out if our district nurses would be able to change dad's feed tube when necessary to as to cut out the trip to the hospital? we have all pretty much decided that it is best if we have minimal contact with the hospital now, as long as we can find the people to come and help us.

cathy - that performance status ranking thing really helped, mum thought it may be a scale of 1 - 10 and dad was at the very low end, and although being at 3 isn't great either we feel it is better than we'd previously thought!

i believe dad is already under the 'special case' thing, or in the process of. mum's trying to find out about the macmillan grants at the moment (another thing we need district nurse for!!) because we've been doing/planning days out, and there are a lot of us including our family friends who have been very supportive too.

it seems that the people who have experienced this to the extreme where they have lost a person close to them don't talk about it - before dad had his laryngectomy we met a couple who talked of the laryngee club and they said they hadn't known anyone who hadn't survived after the laryngectomy, but after reading through threads on here it's clear that there are lots of people who don't survive... i wonder whether they don't tell you so as to make you go through with it, or whether it's something people just don't want to talk about. i feel as though i want to help people who are going through this situation, i want to tell them from our experience what to expect as far as we know, because i wish that i'd have known what could/might happen right from the start and i think it's a shame that the hospitals aren't completely honest with you, even at this point, unless you drag yourself round the country trying to find the truth.





i do have a question - we've been to the seaside on sunday, we're going to a country park on sunday, the zoo on tuesday etc. but one thing my dad loves is drayton manor (a theme park) and we're sort of planning this but we're very worried about if this kind of thing is ok? will he be allowed on the rides, or even only certain ones? eg. do you think he'll be allowed on a rollercoaster? and another thing we worry about which may just be our minds going into overdrive - if dad does for example go on a rollercoaster, could this cause him problems where the tumor growing around the artery is concerned? speed it up?? cause it to rupture?

thanks everyone, kind wishes to all of you and yours,
Hannah

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