Hi everyone
I’m new on here. Nearly 3 weeks ago, I had a biopsy due to suspected prostate cancer. Last week I was told there Was no carcinoma present, but due to there Being Some Small lymphocytes Identified there is a suspicion of lymphoma.
I have been told my biopsied bits Have been sent to the lymphoma Specialist in Bristol for genetic molecular testing.
I am told lymphoma of the prostate is very rare, but I can’t help Worrying.
I can’t feel any Lymph nodes. I do sweat a bit at night and probably drench the sheets about once a month. I do like energy and fuel tired more but I’m thinking this could be down to inflammation for a different reason. My main thinking for this is that from time to time my Prostate which is enlarged Seems to get worse at the same time as all my old injuries Flare up (inside knee pain mcl football injury, de quervains on both wrists, sticking jaw, ache in old groin hernia site.
They are going to Arrange a CT scan whilst were it the lymphoma results.
The thing I don’t get is that red that lymphocytes are often found in the prostate so I’m confused why they link it to lymphoma. Could it be an auto immune disorder instead?
Welcome to our support forum @ButtonPhobic and thanks for having the courage to post so honestly.
You show what complex individuals we all are.
My trick is to write down all my questions and if I would like a 2nd opinion or referral to another specialism. I might request a multi disciplinary team meeting.
No question is off limits or not valid. I ask for answers in a language I can understand.
Perhaps you might want to wait till you get the result of the proposed CT Scan.
If you would like to speak to the Blood Cancer UK support nurses they are on 0808 2080 888
Be very kind and look after yourself and please do keep posting
Hi @ButtonPhobic.
It must be a very worrying time and understandably, you have lots of questions. It’s really important that you write all of those questions down ready for your next appointment.
It’s sounds like the team are being very thorough which is good. Hopefully you won’t have to wait too long for an answer.
In the meantime, look after yourself. It’s hard waiting.
Hi @ButtonPhobic,
Thanks for your post. Its understandable that you’re feeling worried. The not knowing while you wait for any appointment and results is very difficult.
Lymphoma of the prostate is very rare, it sounds like your hospital team are doing a thorough investigation for you with specialist testing and further scans. In regards to your question about lymphocytes and lymphoma. Lymphoma is a type of blood cancer that affects the immune system. It specifically affects white blood cells called lymphocytes, which are an important part of your immune system. Without all your medical details and information, we are unable to comment on what it might be but hopefully you will get answers very soon.
Like @Nichola75 and @Erica have suggested , it is a good idea to write down all your questions and concerns so that you can discuss with your team when you see them.
If it would be helpful to talk this through in more detail, please do not hesitant to get in touch with our nursing support team on 0808 2080 888. We would be very happy to support you.
Look after yourself and please let us know how you get on.
Kind regards
Fiona (support services nurse)
Just an update….
I have had a CT scan that I’ve been told found everything normal except a 2cm nodule on my adrenal gland. I was basically told that the scan results indicated no metastasis. The MRI showed the lymph nodes around the prostate are unaffected and the effected lesion thats grown from 2cm to 4cm in four years is contained within the prostate capsule and the bony elements around it are ok.
hopefully I will know the outcome in a weeks time but just wondered what peoples thoughts of my prospects are. I haven’t lost weight I don’t get fevers or have a skin rash. I’m able to walk for two hours but I do get the occasional night drench where I have to change the sheets sometimes it’s just a head sweat and I have to turn the pillow over but about 60% of the time I’m dry. I’ve also had night sweats on and off for about 10 yrs. i am a stressed type person!
I’d be interested to know which types of lymphoma are less likely based on this update as at the moment I think it could be anything!
Oh @ButtonPhobic thanks for the update and what a question.
Perhaps your medical team have not given you more information because they are awaiting your appointment in a weeks time when they will have all the information they need to make a diagnosis and the way forward clearer.
This time will give you the opportunity to write down all your fears, questions and practicalities for your appointment and make sure that you understand the responses.
Please do let us know how you get on and take lots of special care of yourself, waiting and not knowing seems never ending
HI @ButtonPhobic,
Thank you for the update and letting us know.
I am sorry you have not been given much information as yet and that you are still waiting for answers. Molecular testing results can often take some time to come back. Please can I ask if you have been seen by a haematology team or has this information been given to you by the team who were investigating your prostate?
There are two main types of Lymphoma. Non-Hodgkin lymphoma and Hodgkin Lymphoma. I have enclosed a link to our general information on lymphoma which you may find helpful. It discusses the different types of Lymphoma in more detail Lymphoma . Unfortunately, we cannot comment personally on what type of lymphoma you are less likely to have but hopefully your questions will be answered next week.
Waiting for test results is always such a difficult and worrying time. I hope you have lots of support around you and you are looking after yourself. Many people find the most helpful thing is to talk to someone. Please know we are here to help and support you so do keep posting and as I mentioned before, you are very welcome to contact our nursing support team.
Take care
Fiona (support services nurse)
Just thought I’d put an update on here. Had a phone call on Monday from Urology cancer nurse specialist who told me that I had extranodal marginal zone lymphoma. From my CT scan and MRI it’s looking like it’s contained within the prostate but and I’m new to this so I’m guessing I think I will be asked, when I have my first haematology appointment, to have a PET scan and maybe a bone marrow biopsy to check and confirm that It isn’t anywhere else. Although I do have a nodule of about 1 inch on my adrenal gland.
It feels like my old life arranged from 0 to 58 and now I’m about to start a new type of life. Keep seeing lots of reminders from my old life and it feels like a type of grief. But I think the hardest part is cuddling and taking care of my little grandchildren.
It feels a bit like a bad dream at the moment and I’m in the centre of it. However, my prostate symptoms have limited my life quite a bit for the last few years. So I guess any treatment might relieve those and enable me to live more of a life for awhile.
Hi @ButtonPhobic thanks so much for the update, all your thoughts and emotions seem very natural to me.
When I was diagnosed I felt in a weird bubble with the world going on as usual around me.
Yes, it is like grief as well, all those losses real and perceived.
Look after yourself and please do keep posting how your tests and appointments go and more importantly how you are.
Thank you, Erica. That’s reassuring to hear. The bubble and energy feels so real.
I’ve got questions to ask and not sure who I can ask. I’m also aware that I should wait until I see the haematologist. But that there might not be enough time to ask all those questions when I do. I guess the first question is where is The best place to ask all those funny little things that crop up in your head. For example, at the moment I’ve had a heavy chest cold for about two weeks. The whole family has and it’s affected them similar to me. But I had hives, which I do sometimes get but something new is dry prickly feeling skin when clothes or sheets are pressed up against it.. So I’m wondering, is this a normal malt lymphoma thing or not?
Another question is whether I will need a bone marrow biopsy. Since my prostate biopsy five weeks ago, I’ve had strange achy shoulders and top arms. You can guess how my brain is thinking regarding this.
And a third question and sorry this is the last one and I’m guessing the answer to all of these will be we’re all individual or I need to wait and see. Is in relation to my armpit and chest area. About three weeks ago, after I found out it could be lymphoma, But about a week before I came down with my chest cold, I’ve started to have On Aches And a sense of fullness and both armpits moving into my chest. I can’t fill any lymph nodes. The question I would like to ask is when you have malt lymphoma and have a heavy virus is this normal? Maybe because the lymph glands are fighting the virus?
These are the sort of questions on my mind and unfortunately because of the type of person I am and need to know I spend my nights trolling the Internet. Whereas knowing where to go for Answers to these type of questions would mean I may stop once I have some answers and get back to doing the things I used to enjoy.
Thank you again, Erica for responding and sorry this has been a long read.
Oh @ButtonPhobic don’'t worry about the length of your post.
I think when I was newly diagnosed ever ache or pain/lump or bump and I panicked.
Luckily it was before the internet really took off and all the, sometimes unreliable information, was out there.
Perhaps make a list of your symptoms from this post and ask your haematologist when you see them, I believe in being pleasantly assertive.
Have you got a specialist nurse that you can ask?
Others might be able to help with their experiences.
The Blood Cancer UK support line is there for you on 0808 2080 888
Be ever so kind to yourself and perhaps spending your nights on the internet might not be the best thing to do.
Look after yourself and please do let us know how you get on.
Thank you Erica. Haven’t got a specialist nurse yet. Only diagnosed Monday I suppose!
I’ve found a few helpful things on the Facebook page thats helped.
Dear @ButtonPhobic,
Thank you for the update. I am really sorry to hear about your diagnosis of extranodal marginal zone lymphoma. This is also known as MALT Lymphoma. I suspect the urology nurse was unable to tell you very much when they rang which makes it very difficult for you having to wait until you are seen by the haematologist to have your questions answered. I have enclosed a link here to some information on MALT lymphoma from our colleagues at Lymphoma Action which you may find helpful Lymphoma Action MALT Lymphoma.
In regards to your questions, I would recommend seeing your GP if you are coughing up any sputum or have a temperature with your chest cold. Lymphoma can impair your immune system and you may need some antibiotics. Your lymph glands can enlarge when you are unwell or have a virus but the haematology team will assess all of this.
It is possible that you may need a bone marrow biopsy although having lymphoma in the bone marrow is rare in MALT lymphoma. The haematology team will decide when they see you and this normally gets booked in shortly after your appointment. They will explain what other tests you may require.
I know its easy for me to say but please try not to google too much and try to limit your google searches to reliable sources of information such as Blood Cancer UK and Lymphoma Action. Be gentle on yourself and give yourself time to adjust to your diagnosis. Finding out you have blood cancer is a life-changing event. So if at any time you’re find you’re struggling emotionally, it’s completely understandable
We are all here for you and if it would be helpful to talk things through, please do not hesitant to call our haematology nursing support line on 0808 2080 888.
Take care
Fiona (support services nurse)
Thank you ever so much Fiona, thats all so appreciated. I’ve put that number in my phone contacts and will look up that link.