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Waiting on test results, AGAIN, 22 years of this is getting old already, lol

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Sigh. I wrote about it before so won't bother you with the details but tests came back 'borderline' regarding one componant of urine tests - metanephron numbers, so did a 48 hour urine collection test and took it into the hospital for the lab yesterday. Now the wait for results.

I am a 22 year survivor of NHL for those of you who don't know me, the cancer was cured years ago but have been living with major side effects from treatments ever since. Don't usually worry about recurrance at all but when I get new symptoms like now I'm not stupid either - even with the chemobrain. lol.

Back aches bad enough to need a hot waterbottle and I know different types of back pain cause I have back pain for two different health issues and on morphine for it but this is a different pain and guess where - yup around the kidneys and lower back. Talked to the kidney cancer group and symptoms match but then again not jumping to conclusions as some of them are symptoms of other stuff it could be too.

Worried. Just generally not feeling well either which is another concern. Waiting too for another test for another issue that will probably need exploratory surgery - terrific, just what I need - NOT.

Waiting waiting waiting waiting. After 22 years of it on and off just getting a little sick of it. Sorry for barfing this all up on you but I know most of you don't mind and can relate. Something feels different about this test and these symptoms - you know that feeling 'this is different'.

Oh well, no choice but to wait and pray and hope. I am not above begging either and am doing that too. Stupid 'waiting' thang.

Hope all of you are better today than yesterday but not half as good as you will be tomorrow.

Blessings, Bluerose

terato's picture
terato
Posts: 384
Joined: Apr 2002

Bluerose,

Try not to psyche yourself into believing you have tumor growth, like I used to do! I began receiving above "normal" markers for Teratoma a few years following treatment, assuming that every headache, backache, and bloody stool was evidence that "the shark was back in the water". However, despite MRIs, ultrasounds, CT scans, and X-rays, no evidence of tumor was ever discovered. A specialist in male cancers informed me that some men trend higher than "normal" markers without cancer recurrence.

All my symptoms were found to be due to other less dangerous health issues, but they sure seemed like "cancer" because I had talked myself into believing they were. It has been nearly 30 years for me and my markers are still rising and falling like the stock market! If you ever watch "House", you know that a symptom can have several causes, most of which are easily treated.

Love, Courage, and Peace of Mind!

Rick

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for your comments.

I don't think I am psyching myself out really, just worried because of the symptoms that are presenting are new and also that the test results were borderline so something is going on perhaps UNLESS the lab screwed up (which recently I visited) and yikes - scarey things going on with them I can tell you - all kinds of erroneous things they thought about my samples and would have gone ahead with if I hadn't cleared it up on the spot. Really made me wonder how many diagnosies are false.

Anywho I don't worry about cancer coming back but if there are NEW symptoms and constant pain where there was none before and it has been getting worse I have to wonder. I think we would be lieing to say it doesn't cross our minds when new symptoms arise. Also the way the specialist left the message on my phone 'results are borderline so I need you to retest' and not even say what was borderline - had to drag that out of the nurse - it just all was poorly executed so my trust level is down too.

But interesting to hear that markers aren't always indicative of cancer, actually the thing I am really worried about is treatments if it turns out to be the cancer as I have been beaten down by treatments of the past.

The only reason I post this kind of post about the 'waiting' part of the cancer journey and wondering is because I really feel that oftentimes people are afraid to talk about the times when they aren't super positive and feel like they are being wusses and all but we all have those times and I like to show people on this board that it's okay to have those doubtful days and worries. They will pass I know, one way or another with results.

The waiting game for results is such a huge part of the cancer journey as you well know.

Thanks for the post though, I didn't realize that about markers. Much appreciated. You don't know anything about metanephron do you? I have googled it but wondered if you had any first hand info on that part of the urine tests?

Blessings, Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I think what is behind this big worry is all that I said too but also that the first 2 times I had a diagnosis and all the treatment I was married and had help at home but if anything big happens again I will have to go it on my own at home. That scares me. I will be able to get in a certain amount of help but not overnight help and so it comes up in thought even without symptoms now and again, like for in the future with just plain aging and all that might bring with all the side effects I deal with now.

Stresswise it's easier on my own but with no family close at all and friends off in other parts of the country it's fine when you are independant and a phone call is all you need once in awhile from a friend but if I am in bed alot or need to have help here that's going to be tricky.

I have found that I am quite creative when it comes to helping myself though, I am sure you all have found that, so I'm sure I can make it work but the thought of something big thrown at me now that might limit my ability to care for myself kind of sucks. It just crosses my mind now and then with new symptoms, I don't dwell on it at all.

Also I feel my options narrowing for treatments because I have doubtlessly used up all the rads my body can take for a lifetime now and with my heart issues chemos are going to be hard on me if possible at all. Because I had to have a pacemaker implanted 6 years or so ago for the heart arythmia probably caused by one of my chemo drugs I can't have an MRI for them to check things either. They are stingy with the PET Scans here for some reason but that seems to be my only option for having a really good look. It's just a whole lot more complicated now for me. But hey, this too shall pass? Right? Someone say right? lol

Later all,
Bluerose

terato's picture
terato
Posts: 384
Joined: Apr 2002

will also pass, though painfully!

Love, Courage, and Peace of Mind!

Rick

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

For sure. Sigh. Take care. Bluerose

Noellesmom
Posts: 1273
Joined: Aug 2010

I will pray you get good results from all this testing, find there is no need for exploratory surgery, but, most of all, I will pray for God's grace to see you through these things with the positive outlook you must have had to successfully make it through these years gone by.

Hugs, Bluerose.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I didn't realize that if you make a mistake and post twice you can't delete the whole post in edit. Rats. Sorry about this folks.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

oops repeated post.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am really a positive person but not stupid either and when I see new symptoms that aren't going away but getting worse and results coming back wonky one has to worry to some degree - who wouldn't.

As i mentioned to Rick I think it's important to air our feelings bad or good because so many people hide their downtimes because they feel they have to be brave all the time and sometimes we just arent and need to be able to share that too and be validated.

Thanks for your prayers and kind words. The surgery is not negotiable though but it can be reduced to just a D&C for biopsy but it's the anaesthetic I am worried about as I have alot of after effects of treatments and one internal specialist said no to general anaethesia for me now. He wants me to have an epidural instead - yikes. I can no way be awake for a procedure, too much invasive surgery in the past and tests so I am a little traumatized and have to be put out just for a tooth extraction. That is the other test I have to wait for. I am hoping that if I go in for that test then the endocrinlogist can follow the gynecologist and have a look around for what is bugging me in her field of expertise. I feel like I am falling apart all at once, have done fairly well for a long time now so I guess it's inevitable with all the treatments I have had.

Anywho thanks again for the kind words. Hope you are doing alright. Blessings, Bluerose

3Mana
Posts: 829
Joined: Aug 2010

Hi Bluerose,
You wanted someone to say right so I said it, okay? Gosh sorry you have to go through this waiting game again. You sound like such a nice person who doesn't deserve all the crap you've gone through. Try to think positive! I'm sure after 22 years it's hard not to think the way you do and don't know if I could go through it that long.
Anyhow please keep us posted on your results!! I'll say a prayer for you!
"Carole"

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for the 'right', lol, and your nice comments. Actually I am a very positive person don't think I would have lasted this long is I wasn't but I have to share both sides of the cancer journey and I think for all of us new symptoms scare us. This is part of an ongoing 3 month investigation of things starting to go wrong in symptoms and as yet I have dodged a couple of bullets but the symptoms are building it seems so I would be lieing to say I am not worried.

I really believe in sharing both sides of it all because it helps others to feel validate when they are down because it's perfectly okay to have our down times. Survivors understand survivors. So don't get the feeling that I am all doom and gloom and jumping the gun, just very concerned with the way these things are going right now. Hopefully I will be pleasantly surprised at the results and will be able to leave yet another 2 waiting games in my dust. lol.

Hope this reply finds you feeling well and strong. Blessings, Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for the comments. Sorry about the confusion, I use short forms thinking sometimes everyone knows what they mean, I shouldn't do that so sorry about that. My bad. lol.

I totally get your comments about sports, yikes for me dealing with cancer treatments are almost better than dealing with continous exposure to sports. Painful. lol.
Don't apologize for a joke, humour is healing.

Hope you had a great Thanksgiving by the way.

Hope this reply finds you well and strong. Bluerose

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Bluerose
Glad to see you posting again! Hoping that by today you have gotten back your results. Just wanted to let you know I am thinking and praying for you. Let us know how you made out.
Tina in Va

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for the prayers and good wishes. Yup, back in that waiting game we all know too well but like Rick said 'this too shall pass', one way or another I add. Sigh. Oh well not much I can do about it.

I have to say that when the phone rang about an hour ago I had a weird experience. I just froze. I couldn't answer the phone at all and made a quick decision to let it go into messages and when I was ready I would check the message. I checked it a few minutes later and it turned out to be the nurse from my GP's office, still could mean results were in and they wanted to see me - not good. Then I remembered that I had had my regular blood test for the blood thinners I am on for my heart yesterday so maybe that was it, they were just calling with those results which are nothing - just sometimes I have to change my med dosage - used to that. Whew.

That's what it was - the blood numbers. What a relief but then of course thrown right back into the waiting game. I kind of like the idea of letting local calls go into messages so I can sike myself up to check them and then if it's the endocrinologist's office - that's where the results would come from - left a message I can sike myself up even more for the call.

I am not usually worried at every test or concerned about cancer coming back in the past it's just that I haven't seen an endocrinologist in a long time and had to actually ask my GP to refer me to one because I was having weird symptoms that are new. That's the key - new symtoms plus borderline test results in either the kidney or adrenal gland area or thyroid or diabetes. No thanks if I have a choice on any of those. Still praying and hoping for the best.

Thanks for your prayers and support.

Hope this message back to you finds you happy and better. Blessings, Bluerose

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