Hi so I hope I’m aloud to post this here but I just wanted to share my experience so far and ask a few questions. Other people’s experiences would also be grateful.
So I went on holiday in February where I noticed a mass like bump in my tummy just under my rib so I called the doctor who said everything’s fine and then I left it. 3 weeks ago I then noticed that a mole on my groin started to change so I went to see a doctor who examined me. In her findings she said that my mole looks absolutely fine but she is very concerned about multiple swollen lymph nodes in my groin and a grape sized swelling in my lymph node in my neck the same side as the mass I can feel in my tummy. She then asked me questions about other symptoms I may have so which then we discovered that I had been suffering with night sweats, sudden temperature changes during the day, back and body aches, random burning itchy scalp that lasts a few seconds then goes again, unintended weight lose, lose of appetite, fatigue, sudden bloating and feeling full after consuming even a small amount of liquids or food. So she took bloods and referred me to a haematologist. Yesterday I had my appointment with the haematologist and she said that my bloods have shown that I am anaemic. (Which to my understanding can be another symptom of lymphoma, please do correct me if I am wrong. So then she took more bloods and sent me down for a chest X-ray and said she will refer me for a CT pet scan within 10 days. I then asked how soon I will get my X-ray results and said she that she would look at them this afternoon (yesterday) however didn’t tell me when she would call if the results were bad just said that she would. As yesterday was obviously a Friday and we now have a weekend and bank holiday Monday in other people’s experience would a doctor with bad news wait until after the weekend to call you with bad results? Or would they just call me Friday to let me know. She did say she’s wouldn’t call if my results was okay but I can’t help but think she may be putting it off for a few days.
She also went on to reassure me that people with lymphoma have a good chance of beating it and hasn’t mentioned anything else I could have wrong with me. She also was asking a lot about my 2 children and asked if I wanted anymore to which I replied I wouldn’t say no but maybe not right now. She then told me that people with lymphoma can become infertile and I may not be able to have anymore. I feel like the doctors know that it is lymphoma we are dealing with but there not giving to much away.
I am totally convinced that I have lymphoma that may have even spread. All my symptoms point to that and I know something is wrong.
Hi ,
you’ve done all the right things in getting to a doctor when you knew something isn’t right, and of course they are right in referring you.
And yes, it’s fine to post here, though of course nobody on line can sort out your diagnosis! The haematologist will most likely be waiting for better information about your scan to phone you or even see you again if needed. There are specialists who will review the scans and they are part of a big team who will be reviewing all results and help the haematologist to decide the best way forward for you.
I know a wait at this stage is really frustrating and worrying, but is usual so that treatment can be properly tailored for you.
please do keep posting, here to help ‘virtually’ hold your hand as you go through this.
Hugs xxx
Moomy
Hello and welcome to the Online Community but always sorry to see folks finding us.
I am Mike and I am dropping in past from our Non Hodgkin's lymphoma Group just to say hi.
So sorry that you find yourself on the Lymphoma Rollercoaster but we all understand the position you find yourself at the moment. These early days of test and what if's is hard but once more information is found things will calm down.
Good that you had a quick referral and appointment with a Haematologist as this will move things along now. Did the Haematologist actually say Hodgkin's Lymphoma or was it Lymphoma as there is many types of Lymphoma. An initial check up and X-ray will not 'type' this so until a CT scan is done and a biopsy this is all goes work. Have a look at this link to Lymphoma Action as it explore the diagnosis process.
As to you not getting a phone call yesterday - who actually knows. But would the X-ray enough to worry you?..... it is about the CT. I have had the phone call the following day with "get in now" so best not to overthink these things at the moment.
Yes, Lymphoma is very treatable and the treatments are do-able. I was diagnosed with my rare type of NHL way back in 1999! I was told "incurable but treatable and see it as a chronic illness but you will never see remission"..... fast forward to September 2016 I was told remission - result.
We are around to help you navigate this journey wherever it takes you.
Do ask your questions and we will help where we can.
((hugs)) from the Highlands.
Whatever cancer throws your way, we’re right there with you.
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