Prostate cancer Grade 4 and now this! Could someone help please….

Hi Moonstone1234 and a warm welcome to this corner of the Community although I am always sorry to see folks joining and sorry to hear about your husbands NHL diagnosis on top of his ongoing Prostate journey.

I am Mike and I help out around our various Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different from your husbands I do appreciate the challenges of this journey rather well.

So the first very important observation is that this looks like one of the many Low-grade non-Hodgkin lymphomas. These are slow growing and depending on the type and stage he may not need immediate treatment….. if it was a High Grade fast growing NHLs he would need treatment quickly.

People can be put into Active Monitoring (Watch and Wait) and treatment held back until a condition develops to the point that treatment would be most effective. My type of NHL is very rare and although I had maintenance treatment it took over 14 years before I needed full treatment (you can see my story at the bottom).

Lymphoma can’t be cut out as this is a blood cancer…. but bulky areas can be removed especially where organs are involved but then needs to have follow treatments like chemo, targeted therapies, Radiotherapy…..

You will initially find this all very confusing as there are over 60 different types of Lymphoma and even the words Marginal Zone has a few different types.

Extranodal marginal zone lymphoma (also called MALT lymphoma)

Splenic marginal zone lymphoma

Lymphoplasmacytic Lymphoma (LPL)

I am assuming the next stop (appointment) is seeing a Haematologist?…… 

There may well need to be more tests done in his biopsy to get ‘the’ clear diagnosis and the scan will be needed to check for any other presentation areas of his Lymphoma (Lymphoma can go anywhere in the body but it’s one in the same thing where ever it goes) and will help in Staging him but unlike his Prostate a high stage number in  lymphoma is not seen as a prognosis tool as it is used to 1) identify where in his body it’s presenting 2) what is the best treatment/no treatment option for his presentation and 3) if treatment is required how long it should last for…… remember I was stage 4a in late 2013 but I have been in remission for a number of years living a great life.

As for your Australia trip this is a question for his Haematologist and unfortunately for his travel insurance company.

I have given you a lot of information so do get back to me and I will try and help more.

Thank you for replying so quickly.  We are with Insurancewith and they are happy to cover the PC because it’s stable.  This is something new and I suspect we will be waiting a good few weeks for a scan and diagnosis.  The Dr mentioned chemo but was very vague.  Husband is well and still working, doing gardening etc.  He is late 50’s.

Yes, the notes say haematology is the next step.  I am wondering if perhaps treatment if any can wait until we come back.  We are very very keen to go but not without insurance although potentially we could go with this excluded.  

We did ask the Doctor regarding our trip and he said maybe.  I guess it’s a wait and see.  Will we be on the 2 week cancer pathway I wonder too.  

Hi again. so the Doctor he was seen by will refer him across to Heamatology and as there has been a ‘part’ diagnosis this ‘should’ speed things up……. as for the 2 weeks pathway…. who knows at the moment and you need to understand that Heamatology Units are one of the busiest departments in a Hospital more so as Lymphoma alone is the UKs 5th most common cancer types.

The scan will most likely have to be done and reported on before the Haematologist will see him but again this is not for certain….. this was what happened with me when I was transferred  from Oncology to Heamatology……. but I started treatment the same day U meet my Haematologist….. but my condition had time to develop significantly.

You are going to have to learn a completely new cancer language and questions you need to ask the Haematologist will be slightly different but this link will help you start to understand Questions to ask your medical team about Lymphoma

Low grade NHLs are seen as being incredible but treatable and people will live long and full lives along with their NHL.

We have been told this is the next stage (see below).What does it mean?

Testing for a t(11;18) translocation and MYD88 variant

Sorry no real idea, but each type of NHL will have pointers/signs to look for to confirm a diagnosis.

My biopsy’s we’re sent to specialist labs resulting in the results taking rather a long time

I hope that all turns out well. What they mention is a search for particular genetic mutations in the prostate cells. Cancer is simply mutated normal cells which grow at an abnormal rate. They appear identical to normal cells beneath a microscope, so testing at the molecular level is needed to determine just which type of mutation is involved in the cells. 11,18 and MYD88 are simply two different mutations they look for to help them decide on a strategy to deal with it. 11,18 means that those two numbered genes have been switched about for some unknown reason. Cancers, in one regard, are as individual as each one of us and it appears that the team is digging deeply so as to offer the best therapy to fit the particular mutation.

Thank you both.  At the bottom of the summary it says ‘low grade lamda restricted marginal zone lymph asmcytic’.The rest of it is cut off in the photo I took. They did say that the first polyp they took 3 weeks ago was very likely to be the same as the second and the quotes I am using relate to the first polyp.

So is it a low grade lymphoma and could be a wait and see? What I am trying to get to is will a Doctor likely approve travel and agree that treatment can start after our Australia trip.  We arrive back 10 June.  Honestly won’t hold anyone to anything.  I just want to try and process this.

What would a full body scan do?

Husband is well.  Back to work tomorrow and feels fine.  

BTW - we would never go without travel insurance or against medical advice.

Honestly, this is all a stab in the dark and a lot if’s and but’s.

First the full body scan is looking for any other areas where his Lymphoma may be presentation as there could be areas that have not been picked up yet and with this information they will stage him…… could the scan trigger treatment?…. well it could if something is found,

If this is a Low Grade NHL and it looks like it is and he is getting on with life and no treatment is immediately required he may well be put on Active Monitoring and the Consultant may well say he is ‘fit to travel’ (for insurance purposes this needs to be recorded in his notes)….. but when you declare his Lymphoma to his Travel Insurance company I am not sure what they will say.

If you have no clear diagnosis and plan when you call the insurance they do tend to be very black and white with how they respond….. not helpful I hear you say but there is no logic to what these insurance companies do and say.

When I was on active monitoring I got cover no problem, went to the US and Central America but once I started treatment nothing, no cover……. then it took 3 years after my last treatment to be able to get cover again…… insurers look for 2 years in remission but it took a year for me to get to that point after my last treatments.

But just recently I was checking cover for this summer and as I am over 5 years out from treatment the word ‘cured’ come up and my lymphoma does not need covered …… but my Lymphoma is incurable - all very complicated 

Thank you for responding.  I know it’s stabbing around in the dark. All I have is a photo of the notes and of course the scan will show what it shows. You cannot rush the NHS to give a diagnosis and even if we went privately I don’t think it would move much more quickly.  I know quite a lot about private medical insurance but for husbands PC and medication we are NHS.  I also think the NHS for all it’s issues are OK for cancer. 

I have had a few NHS bumps on my 23+ years of treatment but I am eternally grateful for the amazing work they have done and to get me to where I am today.

Unfortunately when it comes to Heamatology and Blood Cancers (NHS and Private) the journey to a clear diagnosis and treatment is full of complications and it is ever so frustrating.