Couple Of Questions

[Marc311978]

In 1997 when I was 18 I noticed one of my testicles was twice the size of the other. This alarmed me so I went to the doctor on my parents insurance plan. My left testicle was removed because of cancer. It was a seminoma. I had radiation treatment as well. After 2 years I thought I was clear for good.

I went to a fertility doctor on Thursday to have blood drawn for a Karyotype to see if I had Klinefelters Syndrome because my semen analysis showed no sperm. He did a testicle check and said he felt a bb sized lump. I could not feel it but I went ahead to have an ultrasound done per the doctors reccomendation. On friday the doctor called me and said 4 growths have appeared on my testicle and that I need to see a urologist. It is now Sunday and I am confused about many things.

Questions:
1. Is it possible to have testicular cancer again even though my testicle feels and appears normal to me?
2. Could the growths be anything besides cancer considering my past history?
3. I have no medical insurance. Does the hospital have to give me an orchiectomy and follow up treatment or am I out of luck and will it spread until I die?
4. Can seminoma grow in 4 different places on the testicle?

I appreciate any insight you may offer. Thanks, Marc!

[Scott]

Marc, I'm sorry to hear you may be looking at a second round.
1. Is it possible to have testicular cancer again even though my testicle feels and appears normal to me?
Yes, it is possible.
2. Could the growths be anything besides cancer considering my past history?
Did you say you've already had the ultrasound? If it showed solid masses, they're very likely to be cancerous.
3. I have no medical insurance. Does the hospital have to give me an orchiectomy and follow up treatment or am I out of luck and will it spread until I die?
You should be able to be treated and work something out. I'd start with your doctor's office and the hospital, but if you need more advice on dealing with the financial aspects, I'd also suggest contacting LIVESTRONG SurvivorCare (http://www.livestrong.org/survivorcare).

Hang in there, and keep us posted as you learn more about what's going on.

[Marc311978]

Thanks for the advice! I am still in shock that I have to go through this all over again but this time also face the financial and hormonal obstacles. I definitely have a tough fight ahead of me. I appreciate the support you and this website offer. I will keep everyone updated with my story. Thanks!

[Kiwi]

HI Marc

Hope it’s not another TC for you. But it is:
:o You need to have your testosterone levels checked
:o Get onto Testosterone replacement ASAP
:o You may also like to consider prostheses to fill the void.

Hey, with testosterone things will still function as ‘normal’ down there. Any Quests yell out.

Regards

Kiwi :) :)

[Marc311978]

So I have an appointment with an Urologist on Wednesday. Today I went to the Ultrasound clinic and picked up a copy of my report. It says I have 4 hypoechoic lesions on my remaining testicle that probably are neoplasm.

Whats the difference between a lesion and a growth? I read on one website where these lesions are usually cancerous and then I read on a different website that often they are not. I don't know what to believe. I would hate to have another orchioctomy performed to later find out it was not necessary. I hope on Wednesday the Urologist will be able to tell me definitively what is going on and needs to be done.

I also have a question about prostatics. Does anyone here have them? How to they feel? Was it expensive? Are there any health risks to having them?

[BraveOne]

Hi Marc, I am sorry to hear about your current situation. I wont speculate on what it could or couldnt be but I will tell you my experience with prosthetics and TRT. I had a bilateral surgery done in July. The new boys feel harder than natural ones (I have silicone since I am in the US. Seems that you can only get the softer silicone ones outside the US). Although they feel different, I am VERY glad that I got them. At this point, they feel like they are part of me.

As for TRT, I am on androgel and I feel SIGNIFICANTLY better than i used to pre surgery. Whatever route you choose to to down, dont do yourself a disservice by not looking into both options. Truthfully, you shouldnt consider TRT...you should do it right away. Feel free to PM me with any questions.

[Aegean]

It says I have 4 hypoechoic lesions on my remaining testicle that probably are neoplasm.
Unfortunately this means a 95% chance it being cancerous and that the testicle has to go. This now being the case, please heed Kiwi's advice above about TRT.

Whats the difference between a lesion and a growth?
Just terminology. Lesion/growth and even the words lump, bump and cyst are sometimes used perhaps erroneously, but interchangeably none-the-less. What is important here is that the ultrasound has clearly identified 4 suspected tumors. They are not cysts.

I would hate to have another orchioctomy performed to later find out it was not necessary.
The key stat here is 95%. If the uro can get you a 2nd US same day just to confirm, great, but chances are the primary US was correct. Now, we have had a member or two this year that had the I/O and the athology came back non-cancerous... but they are the exception and both were glad they had he I/O as the alternative is unthinkable.


In terms of the prosthetics, you can have them put in now or later. I do not know the cost and that is why I mention later as they may be covered under an insurance plan later.

Your body could have adverse reactions to the prosthetics, but that would be in the minority, most guys here do jut fine after they get used to them... I'll let them chime in.

Last word, sorry that you have to go through this again, but as a veteran of this battle you know time is of the essence and you have to do what you have to do and fast to assure victory.

[BraveOne]

Marc, i just reread your initial post. You and I have very similar etiology. I was diagnosed with TC after doing a testicular biopsy for treating zero sperm count. There was NO lumps in either of my boys. After my pathology was done, they found a 2mm tumor classified as classic seminoma. Truthfully, as hard as it was to get rid of both of my boys, I feel much safer with them out. Keep your head up and reach out to this forum for support. It helped me through some hard times.

[Marc311978]

Thanks for all the information and support everyone. It really means a lot to me. Tomorrow is the big day for me where I will most probably be diagnosed. At least now I am informed when I have a conversation with the urologist about my treatment.

I will keep everyone updated.

[AdrianE]

Hello,

I'm so sorry to hear that you are having to face this a second time. How was your sperm count? Is it possible for you to bank anything at a fertility clinic? I know my count was very low but I was still able to bank a few usable swimmers. You never know one day down the road you may want to thaw them out and make some children!

Let us know how tomorrow goes,

Adrian

[Marc311978]

So I saw the urologist yesterday and he confirmed my fears and says that I need to have another orchiectomy and several CT scans and blood tests done. The last day and a half I have been trying to apply for financial support at several different hospitals. So far I have had no success and still have no surgury or CT scans planned. If nothing pans out tomorrow on Monday I will go to the emergency room at the county hospital and wait probably for 15 hours just to be able to talk to someone about possible treatment.

I am pretty bummed about everything but am trying to stay focused and strong for my family and friends. I will update when I have more knews. Thanks for the support.

[RyanSeattle]

Did you try asking the urologists if you can set up some type of payment plan?

[Marc311978]

Did you try asking the urologists if you can set up some type of payment plan?

The urologist can give a discount. However, he has no control over whether the hospital or anesthesiologist will give a discount.

With no insurance, hospitals will give a discount but require payment prior to service. So they might give 40% off of $20,000 but that still means I need to front over $10,000 which I don't have.

At county I can pay them after the surgury and tests. However, it can be weeks and weeks before I can have surgery or tests done. So it's quite a predicament I am in.

[Marc311978]

Hello,

I'm so sorry to hear that you are having to face this a second time. How was your sperm count? Is it possible for you to bank anything at a fertility clinic? I know my count was very low but I was still able to bank a few usable swimmers. You never know one day down the road you may want to thaw them out and make some children!

Let us know how tomorrow goes,

Adrian

No possibility for freezing sperm because my last semen anaysis showed 0 sperm so the cancer has already made the testicle useless.

[Marc311978]

Marc, i just reread your initial post. You and I have very similar etiology. I was diagnosed with TC after doing a testicular biopsy for treating zero sperm count. There was NO lumps in either of my boys. After my pathology was done, they found a 2mm tumor classified as classic seminoma. Truthfully, as hard as it was to get rid of both of my boys, I feel much safer with them out. Keep your head up and reach out to this forum for support. It helped me through some hard times.


I am really hoping it's gonna be just seminoma so that my survival increases dramatically and so that I can save a lot of money with after surgical treatment.

[Marc311978]

I have another question?

For the past 5 months i have had a lot tenderness in my left nipple/breast area. I have always had gynocomastia but just within the past 5 months the tenderness. I read on some website that breast pain and enlargement is a sign of late stage testicular cancer that has already spread. However, the doctor and a different website said the pain can come from hormones released from the cancer in the testicle and does not mean late stage necessarily.

Does anyone have any ideas or thoughts on this subject? I am really hoping that my cancer has not spread and will not be a stage II or III.

[guitargoalie]

I have another question?

For the past 5 months i have had a lot tenderness in my left nipple/breast area. I have always had gynocomastia but just within the past 5 months the tenderness. I read on some website that breast pain and enlargement is a sign of late stage testicular cancer that has already spread. However, the doctor and a different website said the pain can come from hormones released from the cancer in the testicle and does not mean late stage necessarily.

Does anyone have any ideas or thoughts on this subject? I am really hoping that my cancer has not spread and will not be a stage II or III.

I've been told it's from hormones that are secreted, when I had my testicle cancers I would have clear discharge from my nipples to accompany the tenderness. Both the tenderness and discharge went away a few months after surgery and chemo.

It is illegal to deny someone care and treatment if they have cancer, no matter what a hospital has to treat you, no question. And as far as payment, when all the bills roll in you don't have to pay them all upfront. It is law in all states as far as I understand that as long as you make a payment every month the hospital cannot come after you for money. So lets say you have a $20,000 medical bill, you can arrange to pay $100 a month lets say, until that bill is paid off or they just get sick of it and cut you free. It sucks having that over your head but your far more valuable then dollar figures, do what it takes to recover and live a long healthy life after this.

I wish you the best man, hang in there and keep us updated

[AdrianE]

Sorry to hear about the sperm count. I am not too familiar with medical coverages in the US, but I would have to agree about denied treatment being illegal. Keep at it, there must be a way to have that deferred until you are healthy again?

Adrian

[Aegean]

I have another question?

For the past 5 months i have had a lot tenderness in my left nipple/breast area. I have always had gynocomastia but just within the past 5 months the tenderness. I read on some website that breast pain and enlargement is a sign of late stage testicular cancer that has already spread. However, the doctor and a different website said the pain can come from hormones released from the cancer in the testicle and does not mean late stage necessarily.

Does anyone have any ideas or thoughts on this subject? I am really hoping that my cancer has not spread and will not be a stage II or III.

Marc,

The breast soreness may or may not be related. It is not a definite symptom. Only the pathology will tell you what and what stage your cancer is at. We hope that it is early stage too, but be assured that there are not that many poor prognosis TC's, seminoma or not.

Stay positive, call the Lance Armstrong Foundation or the American Cancer Society to see if any aid available, but please, please, please do not delay treatment.

Keep us posted and good luck.

[Scott]

So far I have had no success and still have no surgury or CT scans planned.You may find more avenues for help from the Patient Advocate Foundation at this link (http://www.patientadvocate.org/report.php). The sooner you start treatment, the less treatment you're likely to need.

[Aegletes]

Zero sperm count does indicate that that testicle is no longer functioning and, in that sense, I wouldn't be surprised if you experience breast tenderness as a result of much-reduced testosterone levels. How are you feeling physically otherwise? Mood, concentration, etc.? I'm very sorry to see that you find yourself facing this in conjunction with the insurance woes that plague so many people in the US.

Alex

[Marc311978]

Looks like I am going to have treatment through the county hospital. Usually in order to see an urologist I would need to wait six weeks. I was able to get an appointment for Oct. 27th by explaining my situation to the supervisor of the urology department. Hopefully i won't have too wait 2 much after that to have surgery.

I don't know why they can't just schedule a surgery right away per the other urologists diagnosis that I saw this past Wednesday. It's not like this urologist is gonna see anything new. I guess it's just a formality.

I really hope the cancer does not spread as i wait for surgery over the next few weeks. Does anyone know how quickly different types of testicular cancer can spread?

[Marc311978]

Zero sperm count does indicate that that testicle is no longer functioning and, in that sense, I wouldn't be surprised if you experience breast tenderness as a result of much-reduced testosterone levels. How are you feeling physically otherwise? Mood, concentration, etc.? I'm very sorry to see that you find yourself facing this in conjunction with the insurance woes that plague so many people in the US.

Alex


The last few months I have had less energy, been more depressed and put on 30lbs. I guess it was due to the decrease in testosterone.

[Aegletes]

The last few months I have had less energy, been more depressed and put on 30lbs. I guess it was due to the decrease in testosterone.

Those symptoms certainly fit the usual pattern resulting from low testosterone: weight gain, loss of muscle mass, loss of mental focus, breast tenderness, low libido, difficulty achieving or maintaining erections, irritability, are just a few of the symptoms.

[Kiwi]

Mate

You say that the eperm count was zero, what about the testosterone? Although it does sound like you could be looking for Testosterone replacement - all the signs are there with what you are describing.

Cheers

Kiwi :) :)

[Marc311978]

So I spent all day at the county hospital. I had my blood drawn to check for tumor markers and to measure my testosterone. I also had a chest x-ray taken and it appears to be okay :)

I have a pelvis and abdomen CT scan scheduled for the 9th of November and then an appointment with the doctor on November 12th to look at all the results and plan the type of surgery. So it's still a few more weeks of trying to live life knowing I have cancer in me that could spread :eek:

When I was 18 years old they performed the orchiectomy prior to me having the CT scan. Is it normal for them to need to have the CT scan done this time prior to the surgery? I am utterly confused as to what the normal procedures are.

[Marc311978]

I have a CT scan scheduled for this monday morning. They did not give me any special instructions. It's been 12 years since my last CT scan. Is there anything special I need to do to prepare for it like not eating? I forget?

[Scott]

Is there anything special I need to do to prepare for it like not eating? I forget?Procedures vary, so it's best to call for instructions.

For my scans, I'm always told not to eat for four hours, but it's OK to drink clear liquids. I always get barium contrast to drink at home, too.

[Marc311978]

Procedures vary, so it's best to call for instructions.

For my scans, I'm always told not to eat for four hours, but it's OK to drink clear liquids. I always get barium contrast to drink at home, too.

Thanks for the quick response Scott :)

Is it possible to have a CT scan and not drink any barium? They did not give me any to take home? I'll just not eat for a few hours prior to the scan and hope for the best.

[Marc311978]

I can't believe it's been just about a month since my diagnosis and I still don't have a surgery planned yet. :(


Patience....Patience

Let my case be an example for all young men out there who think they are healthy and don't need health insurance. Pay the extra money and get the insurance. It's like playing Russian roulette with your life.

[Scott]

Is it possible to have a CT scan and not drink any barium?Yes, it's possible you don't need the contrast agent. Is there someone you can call where you've having the CT scan done?

[Kiwi]

Marc,

So sorry that the whole process is taking so long for you and seems to be so hard!

Since being involved in this forum it has really mede me hugely appreciate my countries health system.

Hope you get this sorted out soon.

Regards

Kiwi :) :)

[Aegletes]

(...)
Is it possible to have a CT scan and not drink any barium? They did not give me any to take home? I'll just not eat for a few hours prior to the scan and hope for the best.

Yes, an alternative oral contrast used by some centers, such as Sloan-Kettering where I go, is not barium-based. I'm asked to fast for only an hour before the scan.

[Marc311978]

Yes, an alternative oral contrast used by some centers, such as Sloan-Kettering where I go, is not barium-based. I'm asked to fast for only an hour before the scan.


They ended up injecting some type of contrast into my vein so I did not have to take anything orally. It took the nurse three tries to find a vein that was suitable to inject the contrast so that was a little troubling and painful.

I am looking forward to Thursday when I see the Urologist again and hopefully get a surgery date planned and the results to these tests.

[Marc311978]

Marc,

So sorry that the whole process is taking so long for you and seems to be so hard!

Since being involved in this forum it has really mede me hugely appreciate my countries health system.

Hope you get this sorted out soon.

Regards

Kiwi :) :)

Thanks! I wish the U.S. would have sorted out some type of universal coverage a few years ago. Looks like my illness is a few years too early :(

[Marc311978]

So I just came back from my follow up appointment at the county hospital. The good news is that the abdomen and pelvis ct came up negative. Also, my blood markers came up negative. So if it's cancer hopefully it will be stage 1 seminoma.

I only talked to a resident and he said my testosterone levels were low and that I had hypogonadism. I heard him talking to someone who said the the 4 hypoechoic lesions could be some type of infectious pusstuoles. I had never heard of that and always thought infection would have some type of pain.

The radiologist said because of my previous cancerous history that I should probably have a biopsy done. I huess an attending pysician is going to review my case and give me a possible surgery date when I come in for my next appointment on Tuesday.

Have any of you heard of infectious pusstuoles? Is that even a viable option? During an orchiectomy is possible to put the testicle back if the pathology shows it to be noncancerous? Could the biopsy spread the possible cancer? What kind of treatment should I ask or demand for when I see the doctor on Tuesday?

All replies are greatly appreciated. Thanks!