Mom diagnosed with lung cancer while I wait for my own appointment to examine swollen lymph nodes

[Samsparadox]

Hello, all! Last year l, I found a single, painless and hard lymph node on the left side of the back of my neck. I had it looked at and was told that it was a reactive node and required no further investigation. Since then, it's stayed the same, but I've had a ton of other symptoms such as extreme fatigue, loss of appetite, and weakness when walking but I just chalked it up to the normal life of a stay at home mom. Stress manifests this way sometimes so I ignored it, until last week. My dad has been inpatient in the cardiovascular ICU since new years, and I've been a lot more stressed than usual, which led to a lot of neck tension and rubbing my neck to try to ease that. While rubbing my neck, I found another lump. This one is much bigger, presumably about the size of a black bean. I tried not to worry about it, but I found myself running my fingers along that area and found a couple more lumps, all in the same grouping of lymph nodes. I believe them to be occipital nodes and posterior cervical nodes. Regardless, I set up an appointment to have these and my other symptoms examined, which is in 3 days. In the meantime, though, my mom disclosed to me that within the last three months, shes been seeing a specialist and has been given the "diagnosis" of lung cancer. I put that in quotations because upon imaging and other scans, they found masses in her lungs and told her that it's more than likely cancerous, then tried to schedule her for a biopsy. She told them she wouldnt do the biopsy and that if she has lung cancer, she doesnt want to know. Shes pretending that if she ignores it, it's not real. I'm just rather distraught. She told me she won't do a biopsy because it doesn't matter what kind of cancer she is dealing with, she will not do chemo or radiation anyway. Both of my parents are dying from different, aggressive diseases and I'm currently waiting to find out if I, too, have a health problem to worry about. I haven't mentioned anything about these enlarged nodes to anyone but my doctor, so really, I just came here to get that off my chest. It feels wrong to complain about my worries to my parents when my parents actually have something to worry about. If anyone has any experience with cancer of the lymph nodes or lymphatic system, and/or lung cancer(s), any "this is my story" type comments or positivity is appreciated. 

[Lolie]

Goodness me you have a lot on your plate.

I have lymphoma and the only way it can conclusively ruled in or out as the cause of your symptoms is with a biopsy, although imaging can certainly suggest that there's a serious problem which needs to be further investigated.

Unfortunately, poking at your lymph glands is likely to further inflame them. Until you can have your symptoms medically evaluated, try to leave them alone so you don't muddy the picture.

[Samsparadox]

Thanks for the advice. I have so much on my plate that I feel as though I'm at a buffet. I'll keep what you said in mind. Did you have classic symptoms of lymphoma? How did you decide you needed to be seen?

[Lolie]

I didn't have the classic B symptoms of lymphoma.

I woke up one morning with really sore, swollen lymph glands on the left side of my neck. I went to see my GP a couple of days later and he prescribed a course of antibiotics.

Over the next week my left tonsil became hugely swollen, although it wasn't painful. I went back to my GP and he prescribed different antibiotics.

Another week on my upper right jaw had become swollen and tender, as had my right maxillary sinus. Given the locations of the pain and swelling, both my GP and myself thought that existing dental issues may be the cause of the problem so he prescribed antibiotic coverage and the plan was to seek an emergency dental care early the following week (this was a Saturday).

During that day the glands on the left side of my neck swelled dramatically and the right hand side of my face went numb so I called the home doctor service. The home doctor sent me to the ED to rule out the possibility of a stroke.

The ED doctor didn't think the problem was dental but when I asked him whether there was a possibility a malignancy was causing the issue he said it wasn't how malignancy usually presents. He gave me imaging requests for a CT scan and an ultrasound.

I didn't have the imaging done until the Thursday as that was the first day there were back to back appointments available for both types of imaging.

I picked up the images on the Friday morning and read the report straight away. It showed masses on my left tonsil and in my right maxillary sinus. I went straight to my GP, who organised for me to have a biopsy done on the following Wednesday followed by a consultation with a MDT on the Friday.

Lymphoma wasn't even the most likely possibility. It was more likely that I had a squamous cell carcinoma which had originated in the sinus and spread or that I had two independent masses. Because they had only biopsied the lymph glands in my neck, even when the result on that came back as lymphoma during my appointment with the MDT, they still didn't know the nature of the sinus mass, so they took a biopsy of that and made a follow up appointment for 10 January.

I had a strange episode on 4 January and ended up in hospital for a couple of days. That's when I found out that both masses were definitely lymphoma and when a very intense pre-chemo workup was started - something which would not have been completed yet had I not become ill.

[Samsparadox]

I'm so sorry that you're going through this. I'm also sorry for asking invasive questions. I'm pretty anxious about seeing my doctor this week, as I went from having one pea sized painless node to having about 5 of them, with the biggest being right at the base of my skull and painful. The others are smaller but they're hard and painless. I'm afraid that if something is wrong, nobody will take me seriously. I sound like a hypochondriac, but I really do feel like something less than ideal is happening in my body. If you dont mind me asking, do you ever struggle with leg weakness? My legs want to give out often, just from walking.

[Lolie]

The questions are fine. I did have an episode of leg weakness a couple of weeks ago but that was caused by my sodium levels dropping critically low after I became dehydrated during a recent heatwave.

Your health anxiety is understandable given your current family circumstances.

Last year I had a colorectal cancer scare following a positive result on one of those faecal blood detection kits which are sent out to those over 50. Confirmation bias kicked in immediately despite the chances of me having CRC being extremely low and it being an extremely treatable form of cancer when detected early.

During that time I discovered a cancer messageboard which had a "worried" section. I was astonished by the sheer number of people who have been convinced by Google that there is no other possible explanation than cancer for the symptoms which are concerning them.

There are many different types of lymphoma, but it can be broadly grouped into indolent (slow growing) and aggressive. Slow growing lymphoma is very often just monitored and no treatment offered unless something changes dramatically. Aggressive lymphomas like mine tend to make themselves known quickly and dramatically.

No-one can tell you that you don't have lymphoma apart from a pathologist who has examined a biopsy. Nothing you've posted suggests that you do, though.

For your own peace of mind, be honest with your doctor about your health anxiety. It will almost certainly escalate if you don't get on top of it quickly.

[Traci-Renee]

Lolie, I’m so sorry you are going through so much, yet you are always there to send a sweet message to my husband and  I.  You are also in my thoughts and prayers.  ❤️🙏🏻

[Lolie]

You're welcome Traci. None of us wants to be on this ride but we're all on it together. Our greatest strength will come from those sharing it with us.

[Traci-Renee]

Lolie,

Amen to that statement!

how are you doing with your treatment?  how are you feeling? Do you have any help?  Please know your in my prayers.  You are such a kind hearted soul.  ❤️

[Lolie]

It's early days yet, but treatment has been fine so far and I'm feeling good. I had enormous relief from the steroids I was given during pre-phase and that has continued since my first infusion.

My children are keeping me supplied with meals and offering help with chores, but so far I haven't needed their help other than during the week between leaving hospital and starting chemo, when I had an insane amount of tests and appointments.

I know that this honeymoon period won't last and that there will inevitably be a few bumps along the way, but I feel blessed to have had such a gentle start to my treatment.