Concerned: multiple symptoms

[JAYHAWK]

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!!

[djmac]

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

[Scott]

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.

[djmac]

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

[Fed]

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.

[Scott]

Well, even then... Some seminoma recurrences can be treated with radiation instead of chemotherapy.

[Fed]

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.

[djmac]

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]

djmac, How long is your doxycycline course for and how many days into it are you? are you still seeing an improvement?

[djmac]

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]

Just a thought // dislike it if you will

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]

true!

good readings though....i have these questions often myself!
I don't think the anxiety will ever be normal!!!
Brian

[dadmo]

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]

I am aware of the purpose of this avenue

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 --

[dadmo]

clyde_on:
I took no offence at all. In fact I agree, sometimes it's best to stay away for a while.