Not (yet) diagnosed, wanting more information - questions

Hi again NothingLeftButSmiles this is your post back up on the group but I won’t repeat what I put in your other post in the group.

As for your questions….

Q1 - no idea

Q2 - no idea

Q3 - All Lymphomas originate in the bone marrow and are transported basically anywhere in the body where the immune system reaches.

a and b are very technical medical terms and 99.9% of the people in these groups will not have that understanding…… thus us questions for medical professionals.

Q4 - All pain should be followed up by a medical professional.

Q5 - again talk everything through with your medical professionals.

I have not had polyarthritis/fibromyalgia/lipomas…

Where do you stay NothingLeftButSmiles ?

Complete and total opinion here. I most sincerely believe that you are greatly over-thinking this. The detail you go into shows a serious interest. Consider taking your cue from doctor. If he or she is ambivalent or nonplussed, then take that as a good sign.

Rule to maintain sanity: You do not have cancer until a pathology report on a tissue sample states that you do. A small lesion that is being examined? For reference, I had a skin lesion on my chest which was about 1cm, oddly shaped, brown and black, growing and was itchy. A dermatologist immediately asked "How long have you had this?" He immediately excised it and sent it to pathology. The result: a nevus, a common mole.

We are well advised to live life one day at a time, no matter how active our imaginations may be - and I know whereof I speak. As we age, there is more and more to be concerned with. At some point, we must simply live life, as many folks lose their lives in traffic collision, cardiac events etc. 

Q: Are you anxious by nature? If so, consider asking doctor about the means to moderate this tendency., as you deserve to live in peace. Cancer or not, anxiety cannot help you.

Wise words, po18guy.

It can be very difficult to manage worry and to not start catastrophising. Some people are more prone to it than others. I must admit I naturally struggle to compartmentalise thoughts, so if I'm worried about something, it can sometimes expand to take over my entire thought process.

Some people find that putting all their nervous energy into learning about the cause of their concern is helpful. It can certainly be a useful behaviour in many situations, as knowledge is (usually) a good dispeller of fear.

That said, when the subject comes to medical tests, results, and outcomes, it can be less helpful. There is a risk of spiralling into conjecture when trying to pre-empt any one of a thousand possible outcomes. Analysing symptoms and interpreting what tests are being ordered won't provide a definitive answer. Only dialogue with the assigned medical staff can really do that.

There are some great constructive ways to manage anxiety, so I think asking for help when struggling with worry is never a bad idea.

I agree with Thehighlander: anything you're not sure about, you should always go directly to your qualified medical professionals. They understand that worry and ambiguity can sometimes be overwhelming, so asking them specifically for reassurance/more information is a very valid and likely welcomed request.

 NothingLeftButSmiles, I can recommend asking some of your medical questions over on our Ask a Nurse forum. You can post your questions in a new discussion thread there and a member of our medically qualified Cancer Information Nurse Specialists will be glad to help.

You are very kind. 16 years and four cancers provide a different perspective. However, I am often the odd-man out, an outlier. Years back, I came to the conclusion that to fear death is, to some degree, to fear life, as the two are inseparable. Thus, I focused on conquering that.

Nevertheless, if we run from symptom to symptom, we risk losing what life we have in the search for an often phantom illness. Prior to 2020, the World Health Organisation recognized 68,069 human illnesses and conditions. More have since been added. Staggering.

Our bodies are capable of producing about 150 differing symptoms, from all causes. Thus, by simple math, each symptom may indicate as many as 450 potential illnesses. Preoccupation with illness may lead to the situation quickly spiraling out of control.

Also of note is that the true pandemic today is anxiety. 1:5 today are estimated to suffer from some form of it. That would be 13.5 million in the UK! Covid-19 has only made this worse. We take notice of it in others but may take no notice of it in ourselves.

Should we suspect a bit of anxiety (and who does not?), we can certainly ask our loved ones or workmates. Family especially know and should be candid with us. We are bombarded with information these days, most all of it terrible. I am not certain that we were intended for this level of  unease.

As an antidote, Cognitive Behavioral Therapy is normally drug-free, and can be of great assistance in restoring our peace of mind. What price may we place on that?

Having said all of this, when things are off they are off. Medical authorities should have a look, and we are well advised to take whatever comfort may be found there.   

Peace of mind decreases as anxiety increases.

Thank you. What I really needed. Yesterday, I got my surgical consult bumped up and that eased my mind a lot. I kept reminding myself that it was just some scary words on a piece of paper, but the anxiety kept building (why I searched for forums). It doesn't help that the pain is debilitating and keeping me from sleeping. I'm untreated ADHD, and actually asked for an assessment at last week's wellness visit which kicked off my journey to this forum.

You are sage.

Thank you for helping me through this weekend. You were there when I really needed to hear from someone with some domain knowledge. And you're right about my medical questions. Thank you for trying.

I'm in the US and didn't recognize that this was UK before posting. Showing up at a new patient intake and complaining of diffuse and disparate severe pain symptoms will get your medical record flagged as 'drug seeker' whether you want drugs or not. Being uninsured since getting laid off in 2018, the only access to care I had were places frequented by drug seekers. I appreciate the don't downplay pain sentiment, but the reality on the ground this side of the pond is that insurers are constantly looking for reasons to not payout and new pt intake flagged as possible drug seeker would be far worse than any cancer diagnosis.

Thank you again! More than you know.

Thank you! And you're right. My approach to avoid catastrophizing is to seek out more information. I'm an IT professional who has worked for one of the world's largest retailers. When a customer facing service goes down, I'm trained to start digging for clues and insights fast and to keep coming until not only are customers no longer impacted but the after action report is complete. My untreated ADHD made me very good at that. It doesn't serve me well when scary words show up on a chart. 

Hi again NothingLeftButSmiles and good that you found our conversations helpful.

Yes Macmillan Cancer Support is a UK based cancer support charity and our medical provision is very different from the US…… but it’s worth noting that po18guy is also in the US…. so you may get some ‘your side’ of the pond help from him.

Thank you. Depending on the geographical State of his or her residence, there is certainly a variety of assistance available. I would guess that the customary employee health benefit would allow for addressing any and all levels of anxiety.

I pray not, bur should a world-class cancer center be needed, there is excellent reference to be made there as well. Delighted to help.

For several years, I was a moderator on an international cancer forum which sadly was sacked during Covid. When it was active, I had to be prepared to assist others with  cancer concerns, and anxiety played a huge role in that.

I'm a widower and very familiar with MD Anderson, even know of $10/night rooms to stay in nearby.

So, I went into the new pt wellness exam with a list (in order):

1. ADHD/Anxiety assessment
2. Smoking cessation
3. Nutritionist
4. Physical Therapist to help with pain
5. Surgical consult for what I thought was a lipoma on my spine causing acute sciatica like symptoms

My mom asked about my plan for chemo if needed. I told her my first four specialists after a positive pathology (negative path in my way of thinking) would be (in order) 1-4 from list above.

You couldn't be more correct about my untreated anxiety disorder. :)