View Full Version : Concerned: multiple symptoms
On the face of it, I must have a recurrence. I've lost 10 lbs. in the last month (5 in just the last week or so) and I have all of this vague numbness, tingling sensation in my lower back, sometimes in my upper back, sometimes in my buttocks. Not really ever pain... although I did have some pain/discomfort in my survivor, and an ultrasound ruled out cancer.
The feeling I'm having now is similar but not quite the same as the one I had in December, which sent me into the MRI tube. Everything I've read of course points to widely disseminated cancer, or bone metastases which both carry a poorer prognosis, even for seminoma. And yet my urologist assures me that the only cases where he's seen this, where back pain was caused by TC, was in cases of very advanced TC, and then only with lymph and lung mets. Very unlikely, he says. Then I wonder whether he's forgotten that my other urologist shot me with shock waves on two occasions to break up my severe kidney stones, shortly after my orchiectomy? Surely that could break up the fledgling tumors in the nearby lymph nodes and redistribute them throughout my body? No? (I've read papers that indicated that this is a possibility...I've also read papers that claim that shock waves can 'kill' tumors).
Then I read that similar symptoms can be caused by low testosterone. I ask my urologist to check that out, and he asks me if I have any decreases in strength or libido. I'm tempted to lie, but I feel as strong as ever in the gym, even though my regimen has gotten sporadic, and my libido is very much intact.
So then I think about the stressors in my life, namely that my urologic oncologist quit being a doctor and is taking a job as chief medical officer of a biotech company, the fact that my boss just dumped a load of work on me, and I have to prepare for a presentation to the department by Wednesday, that since my diagnosis six months ago (six months, I can't believe it!), I've gotten engaged, went on a business trip, bought a house, restored an old desk, moved, and I am in the process of planning a wedding and honeymoon. I also wonder if moving all of my things and spending a couple of weeks hunched over a desk stripping varnish, sanding, priming, painting and laquering may be contributing to my back discomfort. Or maybe it's the fact that for lent I fasted, and didn't eat meat, dairy, and fish for the entire time and I starved myself on Saturday, even though there is no way I would even consider receiving communion because it isn't the best way to protect yourself from other people's contagious diseases.
So where does this all leave me? It leaves me with my urologist giving me a course of doxycycline for the epididymitis, me exactly one month away from my next CT, wondering if I should push it up, but leaning against that scenario, not because I don't want the peace of mind, but because I feel that it would just feed my cycle of anxiety. I wonder if I'll be that 1 in 100 who won't make it through stage I seminoma. And then I think about that statistic, and I wonder how people can have hope in the face of much worse odds, and how they move through their lives with their chin up, exposing their veins for the next course of poison, and I feel like a real wimp.
...and I feel like a real wimp.Hardly, my friend. You are a cancer survivor.
Savin16
04-09-07, 07:10 PM
Can you say STRESSED!!!!!!!!!!!!!! Oh my god, give yourself a break, you deserve it. Your doing way too much. I'm sure your fine, but if it will make you feel better, move the CT scan up. It will be one less thing for you to worry about.
Take a breath. You are truly a survivor.
I think you just need to relax a little.
I take st John worts every day. It's not a Prozac - it's herbal antidepressant.
It helps me.
I'm pretty sure that you are fine and CT scan will not find anything.
I have to stop listening your body and trying to find cancer.
You've had a lot of major life events in the past 6 months, enough to stress anyone...and then toss in cancer on top of it. You are stressed to the max and that, my friend, will cause you to be more susceptable to illness than receiving communion. Take a step back, take a deep breath, and get rid of stuff you don't HAVE to do right now. It's spring in the Garden State...go for a walk, plan a garden at your new house...heck, plan a graden at mine! If it gives you peace of mind move up your CT scan do it. When it comes back clear get on with your life. You are a survivor, not a wimp.
Yeah,
Thank you everyone, and yes Karen, I had cancer, and kidney stones on top of that, and obviously they weren't 'cured' based on my last CT scan, and the 3-4 mm I shot into the urinal at work a couple of weeks ago.
Again, I won't budge on my CT scan... it's scheduled 1 month from now, I'll wait it out. I just had one 2 months ago, and spacing them too close for seminoma is just asking for trouble. It's bad enough I'll have twenty of them in the next 7 years, and I doubt that there would be any significant changes in 2 months. Certainly not enough to cause me back pain, right?
I was going to work on my presentation tonight, but I think I'll sleep soon, rest up, and cram it all in tomorrow. I have all of the slides, I just need to rework them.
Regards,
djm
Hardly, my friend. You are a cancer survivor.
Thanks again Scott!
Hey man,
Doesn't all this stress remind you of grad school (or maybe your postdoc)? Clearly your life has hardly been uneventful, and juggling all of these things at the same time has probably done a number on you. Keep in mind that over the course of these last 6 months, you have accomplished a ton of things, more than the average person I would think (buying your house, your engagement, preparing lectures for work, staying in shape, keeping Lent better than the average catholic...). On top of that, it is more than likely that you have beaten cancer. You have a lot going for you, and I really hate seeing you beating yourself down.
I don't mean to downplay your symptoms, but you can't let the anxiety get the best of you. These last four months (whoa... I had righty taken out exactly four months ago) I have had days in which, despite having a great day -be it because my protein didn't trash or because my kid learned to count to 3 in Spanish- I end up feeling miserably because my mind begins to dwell on the idea that I have had cancer and there is always the possibility that it could conceivably come back. Then I remember the wise words of Ferris Bueller, "Life moves fast. If you don't stop and take a look around once in a while, you might miss it." I have come to the realization the anxiety will probably never go away, but I can't let that drive me; otherwise, I wouldn't be able to function.
You life is certainly full. Don't let the aftermath of cancer drive you nuts. When was the last time you took a vacation (and the Keystone meeting doesn't count; that was work)? Take a long weekend off and get away with your fiancee or with your buddies. The distraction will do you some good, and while you might be busy, sometimes you just can't afford NOT to take the break.
And no, you are not a wimp. You are simply a guy dealing with the inherent mental burden of cancer. I am glad, though, that you are not bottling all of this inside; that would likely be worse. Stay strong. I know you can do it.
Hey man,
Doesn't all this stress remind you of grad school (or maybe your postdoc)? ...You have a lot going for you, and I really hate seeing you beating yourself down.
I don't mean to downplay your symptoms, but you can't let the anxiety get the best of you
Thanks Fed,
And no, I'm not really beating myself up that much. I worry sometimes in spurts, but I am dealing with it... It's just that these symptoms are so bizarre, and I often wonder if they're even real. I'm always poking myself, pressing my back, my gut, my ribs, my bones.
And man, I've bitten off a lot the last 6 months, but I swear it feels like yesterday that the nightmare started, and it's already half a year. Maybe I did beat it, I really like to think so. If I didn't, then I'll keep fighting, there is no other way, but God I hope I did.
Last summer I was swimming in a bay in the mediterranean. I tried to swim to the other side, and tired and couldn't make it. I was in the middle of all of this water, and I had to swim back. I had to make it back, there was no other way. Sometimes, I feel like I'm back there.
Kyriakos
I was in the middle of all of this water, and I had to swim back. I had to make it back, there was no other way. Sometimes, I feel like I'm back there.
But if I am not mistaken, you did make it back ;) .
Smart-alecky remarks aside, I can say with confidence that you are not alone in this. Lately I have been dealing with the phantom pains, the groin twitches, and the lower back stiffness; and, as you may recall, I spoke at length about this to my buddy from Sloan. While he gave me the qualified assurances of an M.D. that all this is normal, I too am fearful of a relapse, or worse, a contralateral reoccurrence (especially with the knowledge that there is something inside lefty for which there is no explanation thus far). Like yourself, I loathe feeling like this, and today was one such day in which that feeling overpowered the otherwise kick-ass day I had today. It's frustrating, and I felt overwhelmed and downright morose. But then, my kid arrived from daycare, and just hearing her say "Hi Papi" made me feel much better. It gave me the perspective that while I might feel horribly, I have good reason "to keep on swimming." And in the off-chance that the aforementioned fears actually come to fruition, I'll have to take it in stride because in this case, it is what it is, and I stand to gain nothing in the meantime by feeling helpless. Yes, it's easier said than done, and I myself have a hard time with this. I only hope that as time goes by, I keep getting better at it.
Back in the bay you had the choice to sink or swim, and you swam. And if you feel like you are once more in circumstances similar to those, you should find comfort knowing that you were able to swim back before, and now that you are wiser and more experienced, you can easily swim back to shore again.
I don't know. Maybe I am not making any sense here; it's late and I know I'm in for a long night... the kid's got a daycare cold which I'm sure I'll catch before the end of the week. Regardless, I hope that what I and others are saying here is helping somewhat. If you need to talk more, drop me a PM and I'll give you a ring. It's in times like these that we comrades-in-arms should stick together.
When was the last time you took a vacation (and the Keystone meeting doesn't count; that was work)?
Keystone meetings are darn near close to vacations, in the afternoons anyway :cool: .
djmac,
Hope your presentation goes well and you can check that one off the anxiety-causing list!
Michael112
04-10-07, 07:38 AM
Hey djmac, I really think your just stressed, if you look back at some of my earlier posts you will see I was very worried. The fact that your have some sort of symptoms is causing you to worry a bit, you have also been doing a lot, I think you should take it easy for a couple of months, take up a hobby or something, but also get to the bottom of your symptoms.
I dont think your numbness and tingling can be tumour related as they actually need to be big enough to compress against nerves to do that sort of thing. And losing 10lbs isnt a surprise.
If your libido is still the same and your doing well in the gym and have the energy for all these things then maybe your hormone levels are ok but still good to get checked... properly or maybe run a 1-2 month course of Androgel as a "therapeutic trial" which most doctors should be open to.
I am curious to know how is your kidney function?? is everything always in range?
Thanks again everyone,
Today I already feel much better. Back pain is now limited to my tail bone and epididymitis seems to have resolved a little bit.
Fed, last night I took my laptop home to work on my presentation and then simply bagged it. I don't know, when I was a grad student and a post-doc I pulled many an allnighter trying to get a paper, presentation, or grant application together by the deadline. I just can't do that anymore. I'd rather get up early and work on it now, and budget my time accordingly.
On a similar note, I think all of those late nights take their toll over the years. We're trained to handle extreme levels of stress, but the body and spirit do get tired. I concur about taking a vacation, maybe I do need a long weekend in Utah, or somewhere else!
Regards,
djm
Michael112
04-10-07, 07:46 AM
Thanks again everyone,
Today I already feel much better. Back pain is now limited to my tail bone and epididymitis seems to have resolved a little bit.
PM me to let me know how you go with that epidiymitis, if it resolves for you I am gonna rush out for doxycycline like crazy. I will do the same if Arimidex resolves it for me.
Fed, last night I took my laptop home to work on my presentation and then simply bagged it. I don't know, when I was a grad student and a post-doc I pulled many an allnighter trying to get a paper, presentation, or grant application together by the deadline. I just can't do that anymore. I'd rather get up early and work on it now, and budget my time accordingly.
Bro, as we get older, priorities change. Every now and then I bring home a paper to read, data to process, or spectra to interpret. Nevertheless, the work doesn't always get done. Like you said, I would rather go into the lab at 6:30 a.m. while everyone is still gone to get all this work done. I used to go into lab on Sundays, and I still do sometimes, but that has become less frequent. These things do take a toll on my mental health, but more importantly, on my family life. My wife and I are taking a long weekend off in Maine for our 5-year wedding anniversary which is coming up in a couple of weeks. I really need the break from the grants, the tissue culture, and cancer in general. Recharging the batteries will definitely do some good, and it's great you are considering it yourself.
Kick some ass with your presentation! I'm sure you will make your boss (and yourself) proud.
JAYHAWK
04-10-07, 02:37 PM
I feel compelled to add a couple of comments....first, typically seminoma recurrences are in the lungs or the clavial lymph nodes not in the retroperitoneal area. Second, I too am stage 1 seminoma on surveillance and had a "scare" at about nine months and had my surveillance tests a month earlier than scheduled. All was normal. My oncologist said we have earned the right to be a little paranoid! This is one of the major side affects of surveillance.
Have you ever had your testosterone levels tested? I have been below normal since the IO and have several symptoms of what I thought was low testosterone but I am in an extremely stressful profession. When I have raised a question about testosterone levels the first question from my internist, my urologist and my oncologist has been "do you have any libido problems". Since the answer is no that basically ends the conversation. Since I am older than most with TC I assume the situation is normal. I did have a bone density test to establish a base-line just in case.
Good luck with all the great events in your life!!
I feel compelled to add a couple of comments....first, typically seminoma recurrences are in the lungs or the clavial lymph nodes not in the retroperitoneal area
Hi Jayhawk,
This is not true...this is only true if there was radiotherapy involved. In that case, people recur essentially never in the retroperitoneal area. If on surveillance, recurrances predominate in the retroperitoneum. So for us on surveillance, we have to get CT scans of the abdomen...those who got radiotherapy are subsequently spared from these extra studies.
Interestingly, whether surveillance or radiotherapy, your chances of requiring chemo are essentially equal (only very slightly higher for surveillance).
Regards,
djm
djm, I agree about abdominal recurrences being the normal progression without adjuvant radiation therapy. I'm not sure what you mean, though, about the likelihood of chemotherapy. The chance of recurrence after stage I seminoma is about 20% on surveillance, and considerably lower with adjuvant treatment.
I am curious to know how is your kidney function?? is everything always in range?
Kidneys are fine Michael. Because of some ignorance and miscommunication on the part of my medical team and my radiology team, I get creatine and urea checked every CT scan... This is because the radiology team thought that I had chemo, and told the cancer institute that they require a kidney function check every time I get contrast. Once I explained to them that I had no chemo, they relented (because I did the blood test the day of my CT scan last time, and they didn't have the result yet). I explained this to my onco nurse at the cancer institute, and she insists that I must do kidney function tests, so whatever, I do them, it only costs a vial of blood extra. I quite like my radiology team, they have let me get contrast without prednisone DESPITE my history of asthma some years ago. I convinced them that I didn't have any symptoms of asthma in the last 5 years, so there you have it.
Anyway, my left kidney apparently has a stable cyst. It also seems to be more prone to stone formation. I credit my stone forming problems to a couple of courses of tetracycline that I carelessly took for acne when I was in my late teens. Cycline antibiotics kill a useful microorganism in your gut, an Oxalobacter that loves and lives on oxolate, preventing it from entering your blood stream. This bacterium populates your gut perinatally, and once it's gone, it's very difficult to get back. Now I'm on Doxycycline, yet another brutal antibiotic. My right kidney forms stones as well, but not at the same frequency. I worry about the cysts, and the fact that I had hydronephrosis in my left kidney in 2000, but I still feel that my stones ultimately saved my life.
djm
I'm not sure what you mean, though, about the likelihood of chemotherapy.
I believe what djm meant is that in case of a relapse, whether one undergoes either surveillance or RT for stage I seminoma, the next line of treatment would be chemo (3xBEP). This is at least what my med onc stated at our first meeting.
Well, even then... Some seminoma recurrences can be treated with radiation instead of chemotherapy.
Well, even then... Some seminoma recurrences can be treated with radiation instead of chemotherapy.
True, but I believe the doses of XRT used in case of a relapse are higher than those of adjuvant RT (35-40 Gy vs. 20-25 Gy). I think the NCCN guidelines mention that all is contingent on the extent of the relapse.
djm, I agree about abdominal recurrences being the normal progression without adjuvant radiation therapy. I'm not sure what you mean, though, about the likelihood of chemotherapy. The chance of recurrence after stage I seminoma is about 20% on surveillance, and considerably lower with adjuvant treatment.
Hi Scott,
What I mean is that if you fail on surveillance, then you'll probably will get radiation because you'll probably be at Stage IIa or early IIb. Some will require chemo because they found lung mets or something else, but most will be salvaged with radiation. In an adjuvant radiation group, any failures will probably be salvaged with chemo. Anyway, the study ( I can dig it up if you want, but I think it was the Royal Marsden study comparing surveillance group to adjuvant radiation group) made the point that your chances of requiring chemo for the ultimate cure was approximately the same for either group. In other words, of the 20% who fail on surveillance, only 25% of those (or about 5% of the original) will require chemo, which is about the same for those treated with radiation.
djm
Michael112
04-11-07, 11:22 PM
djmac, How long is your doxycycline course for and how many days into it are you? are you still seeing an improvement?
djmac, How long is your doxycycline course for and how many days into it are you? are you still seeing an improvement?
Hi Michael,
It is my third day, no real improvement. I think there is a slight reduction in the swelling, but not quite sure.
Regards,
djm
clyde_on
04-14-07, 03:01 PM
I want you to think about this forum all you read is horror stories.
Sure there is some good news however, all of is starts with bad.
You keep reading this stuff you will go crazy.
The little engine that could; in fact did.
Think about self-fulfilling prophecy.
They are real!!
You can’t plant apple seeds and expect oranges. .
huckchef
04-17-07, 11:51 AM
true!
good readings though....i have these questions often myself!
I don't think the anxiety will ever be normal!!!
Brian
clyde_on
Our demographic is a bit skewed. This is the statement from our home page "This site has been developed for the sole purpose of education and support for patients with testicular cancer and their family members." As you would expect most people don't hang around once they are cured and as a result we don't get many "I'm having such a great day" stories. It is true that some days on the forum are rough but that's when we're needed the most.
clyde_on
04-17-07, 12:36 PM
I am aware of the purpose of this avenue --
I am just trying to relay a message --
If anyone took me the wrong way then let me make it more clear.
Sometimes it helps to get away! A vacation if you will.
That is all that was intendeded..
I can't help but notice DJ is going through what I went through --
I honestly hope he takes a break from this place --
And as odd as it sounds it would be a good thing --
clyde_on:
I took no offence at all. In fact I agree, sometimes it's best to stay away for a while.
I can't help but notice DJ is going through what I went through --
I honestly hope he takes a break from this place --
And as odd as it sounds it would be a good thing --
Hi Clyde-on,
I agree, I have been stying away. Taking a break. I plan to go cold turkey for maybe a week or so. I'll drop in once in awhile to see updates on certain folks, and see where I can lend a hand, but for now, I have to stop coming here :).
Peace all, and don't worry, I'll be back!
djm
PS And don't think that I didn't notice that you took a break from 'this place' as well :cool: .
Back at the end of February, I took a break myself from the forums for most of a week. We all need vacations!
Michael112
04-19-07, 10:35 PM
Hi Michael,
It is my third day, no real improvement. I think there is a slight reduction in the swelling, but not quite sure.
Regards,
djm
Any updates djmac?
vBulletin® v3.7.2, Copyright ©2000-2010, Jelsoft Enterprises Ltd.