Scared about the unknown
August 21, 2017 at 12:58 pm #14101AnonymousInactive
In the middle of July I found a swollen lymph node in my groin area. Making sure it was nothing, I went to the doctor the next day to get it checked out. 2 ultrasounds, 1 biopsy and 1 month later, turns out there were malicious cells in the lymph node pointing towards melanoma. The doctor then checked my entire body and found nothing that points to a primary tumor. Her best guess was a pinpoint sized dot under my toe nail. It has been about 2 days and I am currently waiting to see a specialist.
In a nutshell I’m scared. I am in my early 30s, with a wife and 2 young kids who are the joys of my life. I have told my wife a thousand times that I cannot wait to watch them grow up and get married and get to meet my grandkids. I am trying to stay positive but there are so many thoughts and emotions running through my head. Right now, it seems like waiting is the hardest part.
I don’t know what I’m really looking for by posting here. I guess really just positive thoughts and advice on how to get through the unknown parts.
August 21, 2017 at 2:16 pm #14102Annette CyrParticipant
I am so sorry you are having to go through this – but you are not alone. And there are many people diagnosed in their 20 and 30s that do well – hopefully you have caught it early. Fear is an absolutely normal response to a potential or real diagnosis. I know personally what goes through the mind with all of the unknowns. And yes, waiting is really tough – perhaps the hardest, as you don’t know what, if anything you are dealing with. Firstly – so smart of you to have it checked – often people leave it and hope it goes away. A swollen lymph node can be a number of things – but certainly happy to see they are trying to rule out melanoma. It is not that unusual to have an unknown primary. But I am not sure by your posting if you have said they have confirmed melanoma? If so, have they confirmed the type of melanoma? The most common type of melanoma is cutaneous melanoma. Other types are more commonly found in areas such as under the nail bed, which is rarer. Important to know which type you are dealing with. I would suggest you ask for a copy of the pathology report for your records – it should also mention what type of melanoma it is.
So what have they said are the next steps? Once diagnosed, you generally would be looking at surgery to remove. But may be that you will have some initial scans – like a CT and MRI and sometimes a PET scan to determine if they can detect any further spread of the disease. If no further spread is detected, they would likely look at removal of the node and perhaps a further removal of nodes in that area to remove any other potential remaining cancer. After that, they generally look at staging of the disease to determine if there is a need for further treatment using available therapies or even a clinical trial. However, first steps first. I know it will be a bit of a roller-coaster for you. We have a great booklet on line that you can download or you can send me an email request and I can send to you (firstname.lastname@example.org). Also, to let you know, we do have a peer support program if you need it down the road (or now) to talk with another patient who has been through treatment and can help you along the way. Let us know how we can help.
– Annette – MNC
August 21, 2017 at 4:10 pm #14103AnonymousInactive
Thanks for the reply Annette!
So what I was told by my physician was that the biopsy results show that it is probably melanoma but since the biopsy only shows a snapshot of cells, they cannot confirm it. They are currently treating it as melanoma though.
Between me posting and following up on this forum, I got a call from my physician saying that they have me booked in to see a dermatology specialist 2 weeks from now (which I’m not sure I should over analyze because my file was originally marked “Urgent”). After I asked them the one thousand questions I had about this appointment they said this appointment is just a sit down and talk appointment that will tell me everything I need to know and how we plan to move forwards with MRIs, CT scans, surgeries, etc.
This will probably be a very long 2 weeks.
August 21, 2017 at 5:04 pm #14110Annette CyrParticipant
Hi Matt – have sent you out the booklet and hoping it provides some useful information. You should try to write down some of your questions in advance or your appointment. Also ask for a copy of the pathology and start a file of your medical information, so it is always at hand. Two weeks is a long time to wait, but actually is pretty good for what we typically see. Hang in there and try to distract yourself. Don’t read to much into the diagnosis yet, as you have incomplete information, so some of what you read may not apply to you and may just contribute to your stress. We can certainly be a resource for you as you go along.
- You must be logged in to reply to this topic.
- Important Survey for Basal Cell Carcinoma Patients
- Connect with our online community
- Virtual Melanoma Patient Support Group
- Libtay (cemiplimab) Receives Positive Recommendation from the pan-Canadian Oncology Drug Review Expert Review Committee for the Treatment of Metastatic Cutaneous Squamous Cell Carcinoma
- Concerned with questions seeking advice