Hi,
I don't really know how to start this or how to write it so I'm sorry if it becomes all muddled up but I'm really hoping I can connect with people who have been or are in a similar situation.
Aug 23 I started itching all over my body, to the point I was making my self bleed causing scars all over. Small ulcer like spots would appear on my legs arms bum feet fingers just everywhere except my head and face. The drs thought potentially scabies or bed bugs so I was treated for this and nothing worked. I have continued since August to go to the drs regarding this itch that NOTHING takes away I've had antibiotics and creams. Steriod creams, soothing itching creams anti histamines anti fungal just anything and everything they could give me to stop this itch. While this itch is going on I've lost around 9 stone and I'll admit I have not stepped foot in a gym once or done any sort of exercise to do this. My eating habits have changed yes, i have no appetite at all. I have always been over weight starting weight in Feb 23 153kg I am now 98kg. I was weighed in January by gp again on friday the 16th of feb nd in 4 weeks Ive lost about 18lbs. Yet my dr professionaly said 'It's a good thing as you were morbidly obese to begin with' yes I understand that but this is not right. I was getting night sweats really badly but because it was the summer and I'd just had a new contraceptive implant in that it was down to that. I've also not been well in myself I just know something isn't right with my body.
My legs have blueish/purple scarsfrom the ulcers that have healed and the ones that haven't are open/scabbed over until the itching starts and I end up scratching those open and they bleed and hurt more.
Over the last 7 months I have been tested and treated for everything that could possibly cause each of these symptoms individually. I've had blood tests that have came back previously that I have a foliate deficiency and to treat that. Gave me folic acid and although the deficiency in my blood resolved they found that I'd somehow how got high Ferritin which I have no idea how. They don't know why and they haven't really done much to figure out why. They just check my blood and it still always has high ferritin. My other blood markers have been fine as they say. I had a chest xray in Jan and that was clear.
January 24 I noticed a small circular patch of hair starting to disappear on my head. In a few weeks it has gotten worse and infact the hair that remains/growing back in is white and its almost like I have this weird white bald patch of hair. Dr told me Alopecia. Sent me away with a shampoo and lotion.
3rd Feb 24 I noticed a lump just a small lump in my neck where my collar bone is I thought maybe I was just over thinking and left it. Fast forward to the Friday the 16th and I called the dr because it had grown in size and she wanted to see me.
I went in and straight away I knew that this wasn't going to be me being told I was being silly and nothing to worry about. I could tell by her face that she knew what I knew and the only outcome of that appointment was I was being referred to the neck lump clinic in my area under suspicion of cancer. Lymphoma to be exact.
I always had that thought in the back of my head the last 7 months but I didn't want to disregard the drs they know best so pushed for everything to be tested other than this I felt stupid asking a professional to test me for cancer. I'm only 28 and never had a problem at all other than being obese and my gallbladder removed around 6 years ago.
Since Friday the lump has gradually got bigger along with the right side now starting to swell up. I have called my GP yesterday and they basically said I'm really sorry but there's nothing more we can do for you right now and I have to wait for the neck lump clinic to get in touch with me, should be 2 weeks. It feels heavy in my neck and it's uncomfortable. All within a matter of days.
The waiting is driving me mad, I have my friends to support me but I feel so alone.
I feel like I have accepted that this is going to be what I think it is and I know I will be okay. But I guess I'm looking for anyone who's had a similar experience and maybe can talk me through what happens at this clinic. What do I expect? What will they tell me there?
Could this be anything other than lymphoma?
Thank you for taking the time to read this if you have. Any advice or support would be appreciated.
Hi pipoblong and a warm welcome to this corner of the Community although I am sorry to see you jong us........ I am Mike and I help out around our various Lymphoma groups.
I do apologise for not getting back to you sooner but I was out at my daughters and they don't have good broadband - the one disadvantage of living just above Loch Ness.
For context......... I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so do appreciate the challenges of this journey rather well.
You story is not that unusual.......... the Diagnosis of Lymphoma at times is not easy and most GPs will go round the mountain a number of times before they eventually refer folks on for more detailed tests........ and eventually end up with a clear diagnosis, be it Lymphoma or something else.
It sounds like you are going to the ENT (Ear, Nose and Throat) clinic...... This is a normal first step as they are equipped to do some ultrasounds/scans and may take a fine needle biopsy at your appointment........ or they may need to give you a future appointment if a more detailed biopsy is required.
You will not get a diagnosis at this appointment but they 'may' confirm that they need to look further....... the main Diagnosis tools are scans and biopsies.....
The results of these tests will then be reviewed and if Lymphoma is found this will trigger a referral most likely to Hematologist....... the blood cancer specialists.
The fact that you have arrived in this group suggests that you have researched your Symptoms and landed on Lymphoma...... I can understand this...... but these symptoms 'could' relate to other health conditions...... lets see what the tests say.
Lymphoma is complicated as there are over 60 types and sub-types of Lymphoma so 'if' it is identified as being Lymphoma...... other more specific tests would have to be done to identify the type.
Always around to help more or just to chat.
Hi again Gallop2024 let’s look for your husband to get a clear diagnosis and plan on the 17th.
These appointment can be overwhelming at times but do have a look at these 2 links as they will help you get ready for the appointment.
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
Always around to help out.
