Simon99

Thanks again for more help. I will put that to good use. At this stage it feels like i am trying to get through a firewall. I have approached the private hospitals and all of them seem to link back to the NHS. The private consultants all seem to work for the NHS as well as provide private care. My wife and I have a meeting with a private consultant at the Spire Private Hospital Tomorrow evening. The consultants P/A told me earlier that this consultant does work for the NHS too and the Spire Hospital actually adjoins the Southampton General NHS hospital.

Southampton is the Hospital that has already been consulted with by Tracey’s local hospital Melanoma specialist to have her proposal for SRS turned down. Something tells me this wont be an easy ride  tomorrow either. 

I had a call today from a receptionist at the Mount Vernan Hospital which was another private health care lead that I contacted last Thursday. It has taken until today for them to contact me back to say that I would need a referral from a Melanoma consultant in order to connect to a Radio Consultant and that they do not have one. They recommended me to consultants at the Royal Marston hospital which is the hospital that turned down even talking to us last week.

Beginning at this point to feel there is a pattern occurring here. One thing is for sure, no organisation will let you talk directly to a Radio Physician in the UK it can only be done through a specialist cancer consultant. To coin a phrase something sucks here. 

My wife described it perfectly a moment ago. Its not like we are fighting Melanoma any more, its like we are fighting people.

Simon

Bubbles, I feel they have answered many of the specific questions you raise already. From their reports the disease is minimal elsewhere and stable. And they have confirmed no leptomeningeal disease. I asked them is there any there any other reasons for refusing SRS (like proximity of the Tumour to vital areas) and I was told no just the size. 

Multiple people have ruled out surgery due to number of tumours being 4 even the US consulted that I briefly communicated with.

Thanks again guys, I will be contacting Gennesis today.

I would like to talk to my wife’s physician at some point but I fear that at the moment all I am getting from their whole team is an overwhelming response of dont go there when it comes to SRS, full brain or surgery. Full brain I feel maybe I can understand is a tricky one and would question the quality of life aspect after (in my non expert opinion). But I feel there are alternative options from what I have learned from you guys.

At this moment in time it concerns me that if there is a culture of avoiding such treatments under this set of circumstances within our health system then the people who are working within this culture are likely to have adopted a belief that they are correct in their advice and maybe very convincing in their opinions against it if pushed to answer more.

I really want the opertunity to talk with an unbiased radio consultant away from our emmediate consultants in the first instance and then go back to them afterwards. It just fears me that pressure on peoples jobs if they were to go against the systems beliefs could just lead to them wishing only to discuss the negative aspects. I hope that makes some kind of sense. Whilst we understand there are risks we need to have enough information to weigh up the pros and cons. I fear without enough pros coming from my consultant this is going to be a difficult ride.

No information I am receiving is being overlooked and I appreciate the huge amount that Bubbles has shared as well as Barb, Mark and others. The hardest thing for me to run with this quick enough and still spend quality time with my wife without having my head in an Ipad in the that I am with her. 

Will update as things evolve. Fingers crossed sooner than later. 

Yet another knock back on Friday morning, I had an email reply from the Royal Marston Hospital pretty brief and impersonal:

”Dear Mr S Green

I sent all medical paper work, with regards to your wife Tracey Chieza , to consultants – Dr Liam Welsh and also to Dr James Larkin.

All documentation has been reviewed and they have both responded to say that unfortunately there is no treatment we could offer that would be of benefit to your wife.”

This nearly lost my hopes and has certainly knocked them, but I am not prepared to give up. All of your links and experiences have shown that there could be a possibility and 3cm does appear to be where the upper limits are set in everything that I read. As Royal Marston is also linked to NHS then it could be they follow the same protocol which consists of an automated table to form a decision based on survival expectations. I am guessing it could get quite embarrassing for the NHS if private hospitals keep overruling their descions and proceeding with treatment successfully. I am sure there is some human factor in the descision but if she doesn’t qualify then it is the job of the consultant to be certain and have good ground for refusal and they need to be certain of there facts when justifying the decision.

They come across as very certain but I do not understand why their reasons seem very generalised – those reasons being side effects to severe – specifically sickness, headaches and many of the rest of the side effects from the usual menu of side effects that seems to be common to most treatments. They also say that it is not very effective and doesn’t work very well. No one has directly said brain damage to an extent that would effect the patients quality of life to much is the deciding factor. This I would understand as being a justification.

Just to add, the consultant remarked today that she is surprised how quickly Tracey has recovered on the steroids that she has just been put back on. She referred to when she saw Tracey on Tuesday and said you was really ill when I saw you and its good that you are back speaking. I said to the consultant the reason why Tracey had little to say on our Tuesday meeting was from the shock of being told that was it, nothing else could be done. Straight after the meeting Tracey climbed the stairs, walked out of the hospital and said to me I want to go to the pub down the road from the hospital and have a meal. Which is what we did. 

She is effected and fatigued, with headaches and Nausea by this but they are misreading what they are observing in her. She is able to concentrate, talk fine although a little slower than normal and she has the last two days on trot done a few hours book keeping each day which she dose for my business. 

This is the 3 rd occasion since the beginning of diagnosis that the consultants have said they are surprised how quickly she has recovered on steroids following a real low point when there was no Cancer meds underway. It’s as though they dont think she will recover but as soon as they put her on upwards of 6mg of steroids she bounces back within around 3 days. 

Thanks, and yes I agree. Wishing they would entertain SRS but they are so adamant when questioned about this. We have a meeting with the consultant tomorrow about the Keytruda, to sign and get blood tests etc. I feel this should be the time to push for SRS but I know if I do then I will get a heavy expert opinion telling me it is completely a bad idea. 

The Keytruda is only a result of us telling them we want it and it was still met with the consultant saying that she dose not agree that it is worth while. It’s just she cannot refuse this. Rather than put ourselves off SRS by speaking to here further we are going to have to rely on somebody outside such as royal marstone agreeing to take her on. It’s agony and scary waiting for their response but that is all the choice at he moment. I have also emailed another hospital.

I really cant understand why it seems everybody on here is nothing but positive towards SRS and they are so closed book about it. Perhaps bureaucracy, maybe something else. I too have read the Royal Marstone websight and their equipment such as MR Linac or Cyberknife sounds ideal if they agree that Tracey is suitable. 

Below link for MR Linac sounds ideal.

https://www.icr.ac.uk/blogs/science-talk-the-icr-blog/page-details/mr-linac-promises-to-revolutionise-radiotherapy

Just an update guys, feeling a little less low about things today. No ground braking news but we have expressed to Traceys consultant that she wished to go ahead on Keytruda and they are starting her on that tomorrow. She asked if I wanted her to find another Melanoma consultant for us but I said no I would like to seek a private one. It is more the NHS establishment that I feel I am questioning the opinion of than the emediate consultant. 

I have also sent an email to The Royal Marston Hospital detailing Traceys situation and scan reports. Unfortunately you dont just get to phone or email one of the consultants directly as you seem to in the states. So I will have to await a response with fingers crossed. 

Nikki, out of interest what sizes were your larger tumours? Particually the one in the left frontal region.

Thanks for the continued feedback. Yesterday became hard as from the continued reaction of our previous specialists it has scared me that if I convince somebody to do Gamma knife that the side effects could leave my wife in misery with side effects afterwards. I have late last night been looking at the Royal Marstone website and will be contacting them tomorrow. Simon

Wishing for luck to find a consultant with the enthusiasm that you all have to try new things. The thoughts that there may be a chance of paying privately in the Usa is starting to hit a reality check. I cannot get any indication of cost yet but i just read an example of a bone marrow transplant be $350,000 thats scary. The first consultant that i made contact with said he has no idea of cost but it could be prohibitive. Could be back to looking for some enthusiasm in the uk soon. It’s just this large tumour is being indicated that the side effects will be too bad with radion src. All of the patients on here are very encouraging but its this i need from consultants right now. Thanks and it has given me a bit of a boost following a bad day… Simon 

The last comment was a part of our specialists report not an end on matters if anyone is confused by this. It’s been a bit of a day of feeling a bit negative. The first US consultant that we have made contact with has said the large tumour would be treatable but there would be significant side effects since there would be collateral damage from the SRS. Such as severe edema and headaches. 

I am not sure wether these side effects would clear in time. Whats the consensus from people with experience  of this? 

Date
Outcome

31/10/2017
IMAGING: Multiple cerebral and cerebellar mets, 3 of the larger mets have increased in size in a month between CT and MRI.
PLAN: Consider radiotherapy. Too large for SRS. No focal treatment would be recommended.

Apologies that these replies keep doubling. My iPad seems to keep causing this issue and i cannot see a way to edit/ delete.

For interest if it means much to any of you I have just received a copy of the 2 latest reports:

REPORT:
17P0462935 24/10/2017 MRI Head
Comparison made to the CT of 20/09/2017 and those previous.
The left anterior frontal lesion has increased in size to 28 x 26 x 28 mm from 20 x 22 x 24mm in September.
The remainder of the widespread cerebral and cerebellar
metastases show only minimal change in size/are unchanged.
No meningeal disease identified.
Conclusions: The large left anterior frontal lobe lesion
has shown a definite increase in size since September, the
remainder of the widespread lesions are considered stable.

Consultant Radiologist

CLINICAL DETAILS:
Melanoma, multiple sites of metastatic disease, assess
response to treatment
REPORT:
17P0408034 20/09/2017 CT Chest/Abdo/Pelvis/ With Contrast
Comparison is made previous study from 2.5 months ago.

The left upper lobe lung metastasis has reduced in size from
20 x 23-15 x 20 mm. The small left basal lesion is now
almost scar-like. No new focal lung lesion.

Below the diaphragm, normal appearances of the liver,
spleen, pancreas, both kidneys and right adrenal. Stable
appearances of the left adrenal. No pelvic mass or bone
lesion.
The subcutaneous deposit anterior to the right pectoralis
musculature is now linear and scar like. There is a lesion
in the left flank which has enlarged from 3 x 8 to 8 x 9 mm.

Impression: Ongoing response within the lung and skin,
generally stable brain and adrenal metastases. Single
enlarging subcutaneous lesion left flank (see key image).

17P0408033 20/09/2017 CT Head
Comparison is made with previous study from 2.5 months ago.
Overall, appearances of the multiple metastases can be
considered stable.
Occasional lesions show minimal increase/decrease in size –
for example the right parafalcine sign lesion centrally has
reduced in size – currently measures 17 mm in greatest
dimension compared with 21 mm previously, but the superior
right frontal lesion has enlarged – currently measures 15 mm
in greatest dimension compared with 12 mm previously.

Consultant Radiologist

I will be forwarding this along with actual MRI scan to some of the Consultants that have been mentioned to get there opinion. When I asked for them the specialist nurse was really advising against us proceeding with anything and said something to the effect of once the cancer spreads to the brain this overrides all other areas of the body. Your medical people sound much more open minded rather than a closed book. I have to get scans burned to CD from the hospital, does anybody know if this can be emailed by attachment

Simon

For interest if it means much to any of you I have just received a copy of the 2 latest reports:

REPORT:
17P0462935 24/10/2017 MRI Head
Comparison made to the CT of 20/09/2017 and those previous.
The left anterior frontal lesion has increased in size to 28 x 26 x 28 mm from 20 x 22 x 24mm in September.
The remainder of the widespread cerebral and cerebellar
metastases show only minimal change in size/are unchanged.
No meningeal disease identified.
Conclusions: The large left anterior frontal lobe lesion
has shown a definite increase in size since September, the
remainder of the widespread lesions are considered stable.

Consultant Radiologist

CLINICAL DETAILS:
Melanoma, multiple sites of metastatic disease, assess
response to treatment
REPORT:
17P0408034 20/09/2017 CT Chest/Abdo/Pelvis/ With Contrast
Comparison is made previous study from 2.5 months ago.

The left upper lobe lung metastasis has reduced in size from
20 x 23-15 x 20 mm. The small left basal lesion is now
almost scar-like. No new focal lung lesion.

Below the diaphragm, normal appearances of the liver,
spleen, pancreas, both kidneys and right adrenal. Stable
appearances of the left adrenal. No pelvic mass or bone
lesion.
The subcutaneous deposit anterior to the right pectoralis
musculature is now linear and scar like. There is a lesion
in the left flank which has enlarged from 3 x 8 to 8 x 9 mm.

Impression: Ongoing response within the lung and skin,
generally stable brain and adrenal metastases. Single
enlarging subcutaneous lesion left flank (see key image).

17P0408033 20/09/2017 CT Head
Comparison is made with previous study from 2.5 months ago.
Overall, appearances of the multiple metastases can be
considered stable.
Occasional lesions show minimal increase/decrease in size –
for example the right parafalcine sign lesion centrally has
reduced in size – currently measures 17 mm in greatest
dimension compared with 21 mm previously, but the superior
right frontal lesion has enlarged – currently measures 15 mm
in greatest dimension compared with 12 mm previously.

Consultant Radiologist

I will be forwarding this along with actual MRI scan to some of the Consultants that have been mentioned to get there opinion. When I asked for them the specialist nurse was really advising against us proceeding with anything and said something to the effect of once the cancer spreads to the brain this overrides all other areas of the body. Your medical people sound much more open minded rather than a closed book. I have to get scans burned to CD from the hospital, does anybody know if this can be emailed by attachment

Simon