Lymphoma diagnosis this week

Hi CBear and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis.

I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade T-Cell Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well…… and to encourage you I turned 68 last Nov and am living a great life.

As you don’t have the ‘exact’ type of Lymphoma you may want to stick to this discussion at the moment.

There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below but joining a group without knowing the exact type my confuse you more

Hodgkin's Lymphoma

General Non Hodgkin's Lymphoma

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

Mantel Cell Lymphoma

T-cell lymphomas

These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

When you are ready to join a group first click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

You can also scroll through other members posts and click “Reply” to get involved.

As you are not sure as to the type you have I am happy to support you on this discussion but I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.

((hugs))

As for staging….  Staging in Lymphoma is indeed rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation and

3) How long your treatment needs to be.

As for going forward and getting clear information these links may help you get as much information as possible 

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Any questions just ask ((hugs))

Very similar to you. All a big shock as was feeling well apart from cough and I found an enlarged lymph node in neck. Age  47. Waiting to be transferred to haemotology consultant a week on Tuesday to find out more. Feel like I’ve lost weight immediately following diagnosis. 

Hi again Doris77 …… I think that most people, once they receive a Lymohoma diagnosis start to look more closely at all the ‘things’ that happen to their bodies and it is easy to immediately relate these to the Symptoms of Lymphoma….. some can be….. but stress can also have a significant effect on our bodies and wellbeing ((hugs))

Hello CBear

My son has cancer of the thymus gland, which is the gland that lies under the collarbone. Initially they thought it was lymphoma, but the biopsy showed it was thymus cancer. Only one and a half people in a million get it. They found it because they found a mass on his chest when doing a scan for something else. He is being treated with 5 rounds of chemo at 3 week intervals so as to shrink it sufficiently to permit surgery. When found it was 5 cm in diameter. It occurred to me that you might be in a similar position. If yours should turn out to be thymus cancer then there is a thymus cancer forum on here. However there are very few posts as it is so rare. You are welcome to get in touch with me if it should turn out to be thymus as there is so little medical experience of that.

Tannith

Hi CBear,

I am new here too and in a very similar situation.

I went to AAU just under two weeks ago with chest infection symptoms.

I had bloods, X-ray, two CT scans with contrast over a period of two days and was diagnosed with lymphoma. NOT what I was expecting!

I have since had a fine needle with ultrasound biopsy, just above the collarbone, right side and waiting results.

Like you, health anxiety is through the roof. The waiting and not knowing is really difficult.

My understanding re grading is more about treatment. Depending on which type, treatment will either aim to control or get rid. Even stage 4 can respond really well so that’s reassuring.

Try to be kind to yourself, do things that you love to distract. I hope you have someone with you for support during your biopsy and further tests. I was on my own both days and it was extremely challenging on all levels and lots of information to take in, would have been good to have a second pair of ears

Sending positive vibes your way. Best wishes

Hi KitKat17 and a warm welcome to you.

You can see our various Lymphoma groups in my reply to CBear so if you know the exact type of Lymphoma you have do join the group for your type.

I will keep an eye open for you in the groups.

 KitKat17 My main symptom is a bad cough and my swollen glands in my neck hurt. What are yours? Did they give you any medication? I’m wondering if they give steroids to help. Are you working still? CBear  how about your symptoms and work? Also, I’ve got bupa cover but everyone says stick with nhs. Thoughts? 

Hi Doris77