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Survivng the waiting.

Dona Kay
Posts: 2
Joined: Nov 2018

Two or three months ago, I just happened to put my hand in the right spot to notice an odd painless bump on my collar bone. Had my yearly physical scheduHled the next week, and I pointed it out to my primary doctor, who poked at it a bit, told me it was probably a reaction to a cat scratch and not to worry. A few weeks after that I got hit with kidney stones, so saw primary doctor again. This time he asked if I minded if a collegue (another resident) sat in on the visit. The other doctor seemed a bit more concerned about the bump. They both left the room and shortly came back with their attending. Who told them I needed a CT scan with contrast as soon as possible, which ended up being the next day. Two lymph nodes in my neck and several smaller lymph nodes concerned the radiologist, who said I needed a biopsy ASAP.

So my doctor said he'd set up a referral for a needle biopsy. I said I'd prefer an excisional biopsy. We argued, he huffed and puffed, but eventually agreed to call his friend, an oncologist and get his opinion. Totally different attitude when he came back in the room. He then referred me for another CT scan, this time including my chest, abdomen and pelvis (which turned up nothing very concerning, just one lymph node in my abdomen that was within normal size, but was bigger than it had been on a CT scan from several years ago because of a nasty case diverticulitis), and an excisional biopsy. They (some adminstrative person) didn't send the surgical group doing the biopsy all the info they needed, which meant I got to wait through the longest weekend of all time.

Got a call from the ENT place that will be doing the biopsy yesterday, and now have a consult about the surgery scheduled for the 26th. Whever it was I spoke to felt the need to tell me that they were booked solid, but were rearranging everything to get the biopsy done ASAP, as it was such a priority. Don't know why. I was just fine with thinking it not that big of a deal.

So now I sit and wait. And even after the biopsy I know there is a unbelievable amount of waiting still ahead, staging, treatment planning, test results, and this will go on for years to come.

I truly suck at waiting. I was one of those kids who always McGuyver'ed my way through the wrapping paper because I couldn't stand not knowing what my Christmas presents were.

My only other symptoms, besides a second lymph node bump showing up on my neck, have been a total loss of appetite, mildly itchy legs, shoulder pain (which I've been blaming on my sewing machine for months) and protienuria (which may not even be a symptom). I'm very much hoping that this all means either nothing at all or that at worst it's stage 1a or 2a Hodgkin's, which probably means just a couple cycles of chemo with side effects that I probably not even notice, right?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3088
Joined: May 2012

Welcome to you, Dona.

As I read your post, I had the feeling that you have had some form of experience with Lymphoma, since you write like someone who has dealt with it long-term.  Like insisting on the excise biopsy, differentiating between "A" and "B" staging, and a few other points.

Lymphoma is virtually never an emergency, and does not necessitate a rush on proceedures. My neighbor was an exception: swollen all over, so badly that he had to sleep upright in a chair, because he could not breath lying down, and the fluid around his neck was beginning to strangle him. I was not that bad, but highly advanced stage III, with huge nodes from the lower neck to pelvic region, and compressing the heart, esophagus, and superior vena cava.  But such cases are extremely uncommon, mostly because people ordinarily will not allow themselves to get in that condition.  And even I had to wait over two months between my initial CT and my first infusion. My hematologist told me that the wait was clinically irelevant. But emotionally it was highly relevant.

Your CT results sound very mild, no cause for panic.  IF it is lymphoma (and it very well might not be) then almost definitely it would involve some chemo. Radiation alone is sometimes used against very incipient cases of Stage 1 disease, but chemo is the norm today. Radiation only has mostly ended as an approach, since studies conclusively show that radiation supplemented with chemo is much more successful than radiation alone.

Your secondary symptoms are just as easily non-lymphatic in cause as lymphatic.  What you know so far does not suggest HL verses NHL, or the opposite; only a biopsy can make that differentiation.

Your doctors are doing things in a plenty timely manner. You will get in to treatment soon enough, if necessary,

max

po18guy
Posts: 934
Joined: Nov 2011

...the biopsy is benign. They very often are. Google is to blame, with many assuming that enlarged lymph nodes must be cancer. Lymph nodes are not cancer detectors. They are more akin to miniature lungs, beathing in and out - expanding and contracting - as our immune system responds to the millions of pathogens which enter the body daily via the air, water and food we eat.

Paul Allen. Had lymphoma. Did not die of lymphoma. He died of sepsis - massive infection when his immune system was incapable of fighting it off. It is a good sign that lymph nodes expand and fight infection, or we would all be gone as quickly as Mr. Allen. Certainly it could be a malignancy, but it seems to be a very slow growing one if it is.

It could be autoimmune. We can test for 75-80 different autoimmune condirions but there are probably thousands of them. We can check for viruses, but only 3,300-5,000 have been identified and described in scrientific journals.

There are millions of unknown viruses. Their effect on the body is also unknown, but each causes an immune response and enlarged lymph nodes.

Another consideration: 20% of Americans (64 milion) are affected by some level of anxiety. Now, that is an epidemic. And, what is worse is that anxiety can actually create 100 of the 150 different symptoms that our bodies are capable of producing. Since you have no prior diagnosis and are well versed in the lymphoma world, is there a chance that some level of anxiety has driven you to research this?

1 in 5 people that you know have some anxiety. More illustrative is that 1 in 5 whom they know is also anxious.

Keep busy with life until the results are back. A very good line of thinking is:  You do not have cancer until a pathology report says you have cancer.

ShadyGuy's picture
ShadyGuy
Posts: 333
Joined: Jan 2017

is not always a bad thing. Anxiety is why you got a second opinion on your diagnosis.  Its what gets you out of the bed it in the morning. Its why your primitive ancestor climbed just a bit higher in the tree and survived. Its why you saved for retirement. Its why you check on your kids when you don’t see them in the playground. Its why you studied all night and passed that test. Its why you lock your car at night. Anxiety needs to be managed. One needs to “keep a grip on it” but anxiety, when recognized and managed, is none the less a survival trait. Don’t feel bad about sometimes being anxious. Just stay in control. I am talking anxiety not fear. People often speak of bravery as an absence of fear while in actual fact bravery is the act of overcoming fear. Without experiencing fear you cannot be brave. There is a regrettable tendency to treat what should be manageable normal experiencing of fear and/or anxiety artificially using drugs. In my opinion not a good thing and can muck up many aspects of your life. Granted there are some out of control cases where it is appropriate. My point is anxiety and fear are natural emotions and not diseases and have a place in life.

As far as dying from lymphoma, the end comes in many ways, usually by lymphoma interfering with some other process or organ. Saying Paul Allen was not killed by lymphoma which induced his sepsis is kinda like like saying my 12 point buck was not killed being shot but instead was killed when struck by a bullet. But of course I am not all knowing. Its just a non professional opinion.

 

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