Just diagnosed with lymphoma - scared.

Hi MorningLightMountain 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 Thehighlander and I help out around our Lymphoma groups. I was diagnosed way back in 1999 with a rare, incurable Low Grade skin Non Hodgkin’s Lymphoma so I understand this journey rather well.

Yes your symptoms are classic Lymphoma symptoms....... but I only ever had a small rash on my back so one size does not fit all. Your mental fog, confusion, fatigue........ may well be related to your Lymphoma but I would suspect that this is also all down to the stress of this.

Yes there are over 60 types and subtypes of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below. So once you know the actual type you can join the best group.

Hodgkin's Lymphoma (HL)

General Non Hodgkin's Lymphoma (NHL) 

Follicular Lymphoma (NHL)

Diffuse Large B-Cell Lymphoma (NHL)

Mantel Cell Lymphoma (NHL)

CLL, SLL, HCL

The treatments across the various type of Lymphoma can actually be rather different so even if you know if its HL or NHL that would help connect you in with others.

If you'd like to connect in with a group click on the Green (Bold) link I have created above. Then once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.

Do not do random google searches...... it will scare you. The Lymphoma Action website is excellent. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and support platforms.

These links may be helpful at the moment as you navigate you diagnosis.

Diagnosis of Lymphoma

Staging

Questions to ask your medical team about Lymphoma

Happy to chat on this thread until you know more about your diagnosis....... from the outset you do need to 'get' that Lymphoma is very treatable with great results...... and should not be seen in the same light as most other 'solid' tumour cancers....... blood cancers are completely different to the point that a stage 4 diagnosis is nothing like the poor prognosis of a stage 4 diagnosis in say liver, lung, breast, bowel cancers.

((hugs))

Hello Mike and thank you so much for the warm welcome and the recourses in the links above - I shall have a look at them and I will start posting on the relevant forum once I know which kind of lymphoma I have.

I've also found a new lump on my neck which is mildly painful - I assume this is, again, a "normal" symptom of this evil disease, correct? That means it must be spreading as my CT scan results (which were from 3 weeks ago) only showed inflamation of my lymphatic system below the diaphragm.

This has been a really tough road for me, mainly just to get a diagnosis. I first noticed symptoms back in May (losing weight but massive bloating, tiredness, low appetite). I thought it was some kind of bowel disorder like Chron's. I had to fight just to get my GP to see me face-to-face and examine my stomach. That took 2 weeks off my referral. Then they told me to come pick up some stool tests without telling me that one of them was to test for cancer - I only found that out upon googling it. They all came back negative, though. 

Eventually I went to A+E because I was sick of being fobbed off by my GP. They, too, suspected bowel or digestive issues and I was sent for a colonoscopy and a CT scan. It took over 3 weeks for me to know what my CT scan results said. And I had to undergo two colonoscopies because - get this - my first one was mislabelled and they could not tell if mine was cancerous or the other person's.

Turns out I had a lump the size of a strawberry in my caecum - but it was soft unlike a normal bowel tumour. Again indicating lymphoma. I have been in the dark through most of this journey. I've had to fight just to get a nurse or doctor to tell me what's going on. There have been countless delays and I still feel largely in the dark as they all seem to think I need my information sugar-coated.

So from the start of symptoms presenting and contacting my GP, it has taken nearly 3 months to get a diagnosis and I still most likely will have weeks to wait until I start treatment. 

I have been going downhill rapidly this past week and am terrified time is running out, yet there seems to be no urgency whatsoever with my care. I just hope I have time and that it still can be treated.

Thank you for letting me vent here, I have been very lonely indeed going through this.

Hi again MorningLightMountain, this part of the journey can at times be very long and results in a lot of stress.

Your diagnosis story is very familiar for Lymphoma. Even although my very renowned consultant was 99% sure as to the type of NHL I had it did take him a full year, 6 separate biopsies and 2 CT Scans to get the proof....... but the wait made no difference to outcomes.

As your body is dealing with your lymphoma your Lymphatic-System is working overtime holding your Lymphoma at bay....... so lumps and bumps appearing and indeed disappearing can be normal....... But this happens in our bodies all the time - cancer or not as the Lymphatic-System is our bodies safety valves where infections are dealt with resulting in our Lymph Nodes getting raised..... but yes this could be a sign of progression...... remember that as this is a blood / lymphatic / bone marrow cancer...... it can move anywhere in your body.

Lymphoma is the fifth most common type of cancer in the UK (after breast, lung, colon and prostate cancers) but most people don't know anything about it. Lymphoma at times can be very difficult to diagnose and like yourself, people are investigated for other illnesses or cancer and Lymphoma is found by accident. Many people live for years not knowing they have Lymphoma until it's picked up because of tests for other conditions.

You do need to be prepared for the possibility that you will be put on Active Monitoring (Watch and Wait) this will depend on the type of Lymphoma, where it's presenting and how aggressive it is.

There are many levels of Treatment for lymphoma so some Lymphoma types may require a number of different levels of treatment. Lymphoma can not be surgically removed..... although surgery can be used where there is risk to life but then this must be followed up by the standard Lymphoma Treatments.

There are windows when some types of Low-grade non-Hodgkin lymphomas can be effectively treated..... Low Grade is incurable so is seen as a chronic condition that will have various treatments over many years.

But if you have a High-grade non-Hodgkin lymphoma or Hodgkin's Lymphoma these tend to be more aggressive and treatment starts relatively early........ but these types are treated to cure...... all very confusing.

You will see from my profile (hit my community name) that it actually took over 14 years before I had to have big gun treatments as although my type of skin NHL was rare and hard to treat it did not rise to stage 4 for many years.

This may sound so illogical, but you refer to this as an 'evil disease'....... in time you will slowly come to understand that compared to many many other cancers, Lymphomas on the whole fall into the 'good' side of the the evil disease list.

 Keep your questions coming as knowledge is power.

Thank you again for all that info - I appreciate it greatly. I'm going away for the weekend and shall properly reply when I am back. Just know that I am grateful for all your help and advice! 

Enjoy your weekend away…. there are going to be many more to enjoy in the years to come