My doctor suspects lymphoma/alcohol pain

Hi Milliejane

And welcome to a place you never wanted to find.

Yes, there are some folk who have the alcohol pain, it’s not that high a percentage of HL diagnosed patients, but for those who have this, it seems a reliable way of ensuring the lymphoma has gone, if that makes sense? 

I hope that you find a definitive reason for the symptoms and begin some treatment very soon, it’s normally highly successful. 

Hugs xxx

Hi Milliejane.

Alcohol pain was one of my symptoms, though not how my Hodgkins was discovered. I am not much of a drinker so when I came to have my occasional drink last summer and had the pain come on, I thought it was heartburn, as mine was more centrally located (in what was later revealed to be a mediastinal mass). Given that I drink rarely anyway I just cut out drinking entirely and carried on with my life till the autumn, when I 'caught' a cough that would not quit. When I got to the GP we discovered my heart was doing very unwelcome things, and I was having palpitations. I had just got them to refer me to cardiology at the hospital, only for 24 hours later to have a heart crisis and end up in A&E. There we had the all important chest x-Ray. So I am very glad you are having that done! 

It revealed a mediastinal mass that was 21cm wide, taking up almost the full width of my chest, very centred on the left, crushing my left lung and irritating my heart (that explained the cardiac issues) and gave me a pericardial infusion. I don't share all this to scare you. In fact, while I am not at the end of my story, I am well on my way to a very happy ending. My second PET scan nearly 6 weeks ago showed a 90% reduction in my cancer (the mediastinal mass was now dead and just shrunken scar tissue, the two lymph nodes it affected are now healthy again), and my repeated chest x-ray last week shows normal lungs and heart, and an incredibly reduced mass which is now a small lump of scar tissue that is no longer hurting me. I am a few weeks away from my next PET scan, and everyone fully expects that to show the very last cancer cells that the mass left behind in my left lung to also have been eradicated. 

So, from someone who had a truly enormous cancer in her chest, if it is Hodgkin's, there is much hope. And yes, after my first cycle of chemo or so, the alcohol pain was gone. And I did enjoy a few drinks freely to celebrate :) I can't now on my current chemo, but like I say, not much of a drinker ;) so I don't miss it. 

Lots of sympathy and support from me, and countless others on this forum. You are very welcome here and please do reach out and ask questions. People here will do their best to help you in any way they can. 

Hello 

Your blood tests should be abnormal if you have HL .... best of luck with those. 

Regards diagnosis it can all depend on where the HL is .. a pet scan is normally done within a week or so and that will pick it up but I'm my case it was only in my chest at the time so I had to have major surgery to get a biopsy to confirm the type of cancer it is so in my case that extended the final diagnosis by a month or so. 

But try to remember HL is very very treatable it will be a long journey but one that has so much hope at the end of it nowadays. 

Hope all goes well 

Darren 

well the doctor said he didn't see anything alarming on my results but also said he consulted with an oncologist who confirmed that pain with alcohol is a symptom but that unless there are any other symptoms to not worry about it, the oncologist mentioned swollen nodes, itchiness etc, but when i mentioned i had a swollen node under my jaw the regular doctor didn't seem concerned because that one doesn't hurt with alcohol, and has been there for awhile at the same size, and then he said that it was up to me, he could give me a referral or i could just try to stop worrying about it and move on. he admitted he wasn't familiar with any of this and that is why he gave me the option. everything I've read says that not all the nodes hurt with alcohol and that most HL nodes are hard and move around, which is what this one does. i dont know what to think, do CT scans detect better than regular X-rays?? i just don't know how to make the decision between pursuing this or not, but with everything I've read about pain with alcohol being a "pathagnomic" symptom it freaks me out

If it were me and I had a GP willing to refer, I would take the referral. You are worried and scared, and he's willing to support you. Though by far the best diagnostic tool aside from a PET scan is biopsy. For example, my x Ray showed my mass so they knew I very likely had a lymphoma, but not which one. I had two needle biopsies of my mass and one of my affected lymph nodes. The lymph node gave by far the best tissue sample and gave me my diagnosis. Knowing all this now it's what I would be pushing for, as i doubt they'd go as far as a PET scan without being certain it is cancer. CT scans can be useful and give more information yes, if there is more to see than those nodes, and get an accurate size of the nodes too. Certainly couldn't hurt.

A CT scan would them if it lymphoma or not but it wouldn't tell them what type .... it baffles me that when it's a worry for the person and if there is a slightest doubt it could be cancer that they don't just do a CT scan anyway to be sure. 

Hope you get it sorted 

Darren 

Hodgkin’s is rarely diagnosed by blood tests, particularly standard tests, and not that often by a fine needle aspiration. A CT scan will be valuable as it does show abnormality, and when daughter was in the early stages of her long illness (she’s ok now!) CT scans were the only type available.

An excision biopsy of a node is the best way for a definitive diagnosis, and an easily palpable neck node can be removed in day surgery.

Hope you get answers soon

Hugs xxx

I personally would push for referral, I had normal blood results at diagnosis, and that was with 9cm mass in my chest! You will just worry otherwise, hopefully all will be fine

Hi MilliJane,

If I were you I would absolutely demand a referal, I found a lump on my collar bone in November, blood tests and chest xray completely normal, my doc wasn't concerned as I had no symptoms at all, I demanded with my doc that he refer me, I then ended up with a ENT specialist who found there were 3 or more lumps, also my Dr sent me for an ultrasound scan, they did needle biopsies during this , and also sent me for CT scan the same day, the needle biopsies didn't show anything, but the ENT specialist was convinced it was lymphoma from the CT scan results, Then had to have the lymph node removed for a biopsy, after all this I was confirmed as having Hodgkin lymphoma, Then handed over to a haemotologist who sent me for a pet scan, this is used for staging the disease, I'm a stage 2a, Dr say that  treatments for lymphoma are around 90% successful , started mine 10 days ago , the chemo is hard going but I'm very optimistic for the future.

Best wishes

Clivo

Thank you all for your replies. I was debating back and forth for a few days but then yesterday I fainted at work because it felt like I couldn’t get a deep breath and I had sharp pain with every breath radiating up into my collarbone from my chest. I left a message with my doctor and am waiting for a call back. I had told myself that the chest X-rays should’ve shown things to explain the chest pain so I’m glad to hear your info