My story

[Ozguy32]

Hi everyone, reading through all of these stories shows that others have the same or similar circumstances and that I am not alone.
I have a somewhat incomplete story to tell. I do not have all of the results as I have just had the I/O.
About 2 months ago I had my left testicle swell up to double it's normal size in only a couple of days. I knew I had to go and see a doctor but before I did the testis swelled up even further to approx 4 times it's normal size(no pain and very hard), it was a sunday and my own doctor's surgery was closed so I went to the ER at the local hospital. An examination with ultrasound showed an infection probably epididymis-orchitis and was sent home with 2 types of antibiotics, I was also given instructions to come in a week later for another U/S. After a week of antibiotics no change in the testis and I went for the 2 U/S which showed the same result as the first. I continued on the antibiotics until I was sure it was not doing anything and then went to my own doctor. He decided the antibiotics were not the correct one to be treating this condition with and prescribed some much stronger and more suitable(I was happy with this as I was sceptical about an ER treating me for anything other than an emergency). I took these tablets for 2 weeks and returned to the doctor, by this stage the testis had enlarged even further approx 6-7 times normal size. He immeadiately ordered an U/S, the results of this were a tumor in the testicle. The U/S shows the spermatic cord enlarged as well. I was referred to a Urologist for a consultation and had blood tests showing tumor markers elevated. I am not sure what the levels and which markers were elevated. A CT scan was done which showed several retroperitoneal and several paraaortic lymph nodes enlarged, under 2cms. There is a small spot on the lung which is described by the radiologist report as a 3mm incidental calcified granuloma. The results of the CT I have not discussed with any doctor as the results were only available 1 day before the I/O and I was told of the elevated tumor markers over the phone when being told when to come in for surgery. I then had the I/O and have been out for a week now. I am going back to the urologist in a week for to find out what further needs to be done.

It did seem strange to me as to why they did not find the tumor in the first U/S but as I have done some research I have found that it is unusual for the testis to swell this big. The Urologist told me that possibly the tumor has bled and infected the whole testis as large parts of the testis looks necrotic.
At age 32 I was shocked to be told I had T Cancer and have been through a lot of emotions in the last 2 weeks and now find it hard to concentrate on anything other than what is wrong with me and what the next treatment stage will be if any. I have a good idea on the different stages of TC and any advice or experiences or support is very much appreciated.

regards

Trent

[Fish]

Hi Trent and welcome.

Sorry you had to join the club, but you're in good company. Like Paul said, get copies of all the test results, including the pathology report on the testicle. Post the results here when you get a chance.

If you haven't found the testicular cancer resource center, here is the link,
http://tcrc.acor.org/

You're definitely not alone. Don't feel bad about not being able to focus on other things, go ahead and focus on YOU and what you need to do to get better.

We're here to provide information, support, details on our treatments and why we chose what we did. Whatever you need, just ask away.

Best wishes.

[nskene]

Sorry to hear about your situation. On the bright side, if there is something that needs to be taken care of, at least you are aware and on the road to taking care of it.

I had a hydrocele and it actually masked my tumor while it grew. Though prob not as large as yours, it was big. I learned later it could be a symptom of a tumor.

I hope things improve. Like you, I am 32 this month and had similar situation when diagnosed so I can really relate. But mine had spread more than yours. There is a lot of hope with current treatments. Have you been in touch with an oncologist?

[Ozguy32]

Hi Everyone, thanks for the encouragment, advice and support, I really need it.
I have been given the pathology report on the testis and the pre & post operative blood marker results.
Pre I/O AFP 37 Post I/O AFP <5
Pre I/O HCG 40 Post I/O HCG <5
I have been told by the urologist that these are back to normal, a good sign finally.
The pathology report states the testis tumor as 8cm x6.5cm x6cm. A very large tumor from reading these stories and various websites but is extensively necrotic tissue. They think the original tumor has bled and caused the swelling of the tumor and the testicle rather than the tumor cells multiplying and growing themselves. "I hope this is what happened as the tumor grew to its full size in about 1month". A thin peripheral band of surviving tumor shows predominantly embryonal carcinoma. There are some areas with a more reticular pattern suggestive of yolk sac tumor, but there are extensive secondary inflammatory changes. The tumor is confined to the testis and does not extend into the rete testis or into the tunica albuginea. The tumor is well clear of the spermatic cord resection margin. No macroscopic abnormality of the cord is identified. Estimation of percentages is not meaningful because of the degree of necrosis. "There is no mention of lymphatic or vascular invasion, can anyone tell me if this means there is none?"
The post CT scan shows the lymph nodes as no change, several prominent enlarged paraaortic nodes 1cm x 1.3cm and several sub 1cm bilateral inguinal lymph nodes.
One thing I am concerned with is the back ache I have had for over 12months. It is on the very lower back and on the left side(I/O was left) it is a fairly constant ache and gets worse if I stand in one place for 5-10minutes. This ache has gotten worse in the last 2 months. The urologist thinks there is no connection with the testicular cancer, I dont agree. He said that the size of the lymph nodes are not large enough to cause back ache or pain. It just seems to me like there is too much of a coincidence.
Another thing that concerns me, were the tumor markers much higher before the bleed occured(if it did) and did they drop after the bleeding destroyed much of the tumor?

I am in Australia and the RPLND operation is rarely performed here, doctors prefer surveillance or chemo therapy in suspect circumstances. I appreciate anyones input as to what they think will happen or what I should do in regards to treatment.
I have been referred to an oncologist. So will hopefully get a better idea after speaking with them.

cheers

Trent

[Fish]

Hi Trent,

That's great that your markers have normalized. Regarding the lymphatic and vascular invasion, it's possible that due to the extensive necrosis, they were not able to assess this. As far as the nodal enlargement, 1.3 x 1.0 is really not very big; I would tend to agree with your doc that nodes this size are unlikely to cause back pain.

It's interesting that your nodes are slightly enlarged, and your markers have returned to normal. That might cause your doc to lean toward surveillence. of course, the doc might ultimately end up asking you choose which option to take. You could certainly collate all your information and email Einhorn for his opinion. I never hurts to have as much input as possible.

When do you meet the oncologist?

[Karen]

Trent,
Belated welcome. Good sign that the markers returned to normal post I/O. The nodes are just slightly enlarged, as Fish noted. I believe the normal range for para-aortic nodes goes to 1.1 cm.

http://tcrc.acor.org is another great place to find information, questions and resources. There are also 6 experts listed in Australia....I suggest you consider a second opinion on treatment, or, if close enough, use one of these docs for going forward.

You're not alone in this, we'll help in any way we can.

[Scott]

Hey, Trent, I just wanted to add my welcome belatedly. You're still in that awkward waiting period between surgery and a definite plan of attack. Rest assured that you're on the path to cure, and keep us posted about your oncologist visit.

[Ozguy32]

Hey All,
Sorry for not regularly posting on here. I check out this site everyday and read everyones posts. Hearing other peoples experiences and supportive comments for everyone is something I have cherished over the last 3 months.
I had my first meeting with my oncologist 3 weeks ago. He recommended surveillance but ordered an MRI to rule out the possibility of mets to the spine because of the lower back ache I have experienced. I have had the MRI and been back to the onc doc yesterday. The MRI is clear although it does not show a bulging disc or anything out of the ordinary to suggest why I have lower back aches, this is the least of my concerns at the moment. I also had the third CT scan on the same day as the MRI and the onc doc had the results from that. The suspect lymph node that was 1.3cm had doubled to about 2.5cm in size. The blood markers are all still normal. The onc doc has given me 2 options- start chemo immediately or wait 1month to see if the markers go up. He strongly wants me to start chemo in the next week. I asked him what else could cause the lymph node to double in size and his answer was nothing could do it. I had decided in that meeting to start straight away but deferred making a decision until this Friday. I had lung tests and audio tests and signed up for two trials all on the same day so it is full steam ahead for chemo. I will be able to bank sperm twice maybe three times before chemo starts.
I have read many things on here about what to expect but I have one question. The onc doc gave me the option of doing the chemo as an inpatient or outpatient. I don't want to do it as an inpatient but I am hesitant to go home after being pumped full of chemicals. It is possible to be an inpatient for a couple of days or a week in the first cycle and then do the rest as an outpatient. Is this a good idea? Did anyone do this? I am nervous about going home and going to sleep when caustic chemicals are in my blood stream. Am I just overeacting to the chemo chemicals?

Thanks everone for you support.

cheers
Trent

[Scott]

Trent, I'll leave your question to those members who have been through it, but I wish you all the best as you start chemotherapy. Kick cancer to the curb.

[ebfun7]

Trent,

Are you sure this groth in the lymph node is not being caused by teratoma and an RPLND may be a curative option since your markers remain normal? I know you said they do not do that in Australia but would you be willing to travel? Teratoma often causes lymph node enlargement with normal markers. Although I do not think there was any mention of teratoma in original pathology you posted. If I were you I may e-mail Dr. Einhorn and get a second opinion before you begin chemo.

As for the chemo, my husband did it outpatient. He slept a lot and he said he would rather sleep at home then in the hospital. Also the effects never really bothered him until late in the week and the week after. For example, he would start to get really tired, and sick about Thursday during his chemo week. His worst day would be Sunday and Monday after the week of chemo. He would start to perk back up around Thursday the week after chemo. He did not want to be in the hospital when they adminstered the chemo because for him those were not his worst days.

If chemo is the way to go good luck to you. I am not a doctor but like I said it may be worth getting a second opinion.

Kick cancers butt!

Erin

[Savin16]

Where do I start, first, I am so sorry that you have TC. Cancer sucks. You have a bit of a tough path in front of you, chemo is no fun by any means. but you can beat this. With the right Doctors, and treatments. As many have mentioned, get copies of everything. if you can't get to a center of excellence, if you have copies of everything, you can forward them to Dr. Einhorn at Indiana University or Dr. Sheinfeld (sorry for spelling, not sure) at Sloan. If that's something you wish to consider, there are many here that can give you contact info.
Now I know your Dr. wants to start chemo quickly, and you were concerned about being an inpatient or outpatient, or splitting it up. No clue if you can, sorry, not much help. My brother did his chemo as an outpatient. He drove himself there and back BY HIMSELF everyday. on days he was really sick, they would just give him something that would basically let him sleep all day, but then he would need a ride home.
I'm a bit confused about the change in size of the lymph nodes, why is RPLND not considered first, then chemo possibly? I don't know much about this, so I will leave it to our experts here, but in my brothers case (ever case is different) it did show enlarged nodes, he did 4 rounds of BEP, then he needed the RPLND because the lymph nodes were still getting bigger. That's when we contacted Indiana, (should have done that first) Indiana told us from looking at our records, that RPLND should have been done first, then only 2 rounds of chemo (live cancer still found after nodes removel) so all that inital chemo could have been avoided.
Keep posting info as you get it, so people can chime in on what is next for you. If it is chemo, it's tough, but you can do it.

[Karen]

Trent,
I agree with Erin..teratoma could cause the node growth and I also agree that a second opinion from an expert would be a good idea.

[Scott]

The information about stage IIB non-seminoma on page TEST-7 of the NCCN guidelines (http://www.nccn.org/professionals/physician_gls/PDF/testicular.pdf) should help explain the options. An expert opinion is always a good idea.

[Fish]

Hi Trent,

It seems like your original tumor was necrotic and therefore the pathology assessment might have been difficult. The points made on teratoma are a consideration. If and I say IF that node has teratoma, chemo will have no effect and surgery will be needed at some point. I would seek out an expert opinion, as your markers were elevated and have returned to and remained normal. It is unfortunate to be in a position of uncertainty, I think an email to Einhorn for his opinion would certainly be worth the effort.

Hang in there and keep us updated.
Best wishes.

[Fed]

Trent,
I looked back at the pathology report you posted earlier in the thread, and although most of it is dominated by necrosis, it does say you had traces of embryonal carcinoma and yolk sac. The former is more aggressive, and the latter tends to yield tumors that are large. There is no mention of teratoma, and it doesn't seem like you had any. Also, teratoma doesn't have a tendency to "burn out" because it's a slow-grower. With an enlarging node and no markers as a handle, it is likely that you will get a recommendation of 3xBEP or 4xEP. With a node that is nearing 3 cm, I doubt a urologic surgeon would recommend RPLND without debulking with chemo first. I do agree with the others, though, that a second opinion would come in handy.

[Ozguy32]

Hi Everyone,
I have spoken with my onc doc again and I have come to the conclusion to go with 3 x BEP starting Wed of this week. The lymph node has grown very quickly and strongly suggests malignant tumor rather than teratoma. My oncologist mentioned if I wait for the markers to go up then the size of the tumor could be larger postchemo and could likely need to be resected.
I have completed all the prechemo tests and will do the first 5 days in hospital. I will have to complete the weekend of the first week of each cycle in hospital as they do not have outpatients on the weekend.
I am anxious about getting started with chemo but I know that it will be OK after a couple of days.
I will check in here regularly over the next few months.

Trent

[richy77]

Trent - sorry to hear you are going through this buddy, but you really have found the right place for support. I am currently half way through 4 cycles of BEP, and whilst I have found it hard you will get through it. If I can help in anyway, offer support, or give you a current insight into what it is like to go through BEP then let me know.

Thanks
Richard

[Fish]

Trent,

With that node growing fast, it sounds like chemo is the right decision. I'm sure some of our members will jump in and give you some advice to help you fight through it. Just a couple tips;

Drink lots of water
Don't take any supplements, herbs, vitamins, etc, unless approved by your oncologist.
Start your anti-nausea meds BEFORE you feel that you need them.

Definitely keep us updated, we'll be here whenever you need us.

Best wishes.

[Scott]

Trent, it's good to have a definite plan of action. It may seem like slow motion while you're in treatment, but keep moving forward.

[Savin16]

Glad to hear you have a plan for beating this damn disease, not happy you have to go through it though. I comply with Fish on the fluids, it's so important to flush your system out, and be on top of your meds. The meds depend on your doctor, but you should probably take an antacid in the am, (Prilosec) Ativan helps with anxiety, and with nausea, Compazine, and Zofran where 2 other anti nausea meds my brother took, and ativan again at night. Emend and Marinol where other anti nausea meds my bro tried too. Again your Dr.'s will guide you as well with this. baselines should be taken for your hearing and lungs prior to treatment.
You will beat this.

[Ozguy32]

Hi everyone, ;)
Hope you all are well.
Just updating my original post with my latest happenings. I have been on here regularly and feel that I have become knowledgable enough on TC to post replies to new members.
I have finished chemo 3xBEP and have had the final CT scan. The Lymph node that was growing has regressed to 5mm. Apparently I do not need an RPLND, well that is what the docs have told me. The tumor markers did not rise at all during the chemo either and they are still normal. There was no teratoma in my original pathology so I am not concerned about the 5mm left.
I had a pulmonary embolism just before the last cycle. The pain in my rear lower left rib cage was more than I could ever imagine. I do not wish to ever have that again and do not wish it on my worst enemy.

I still have the ache and pain in my lower back(but it was not there during chemo) and am going to my GP to see if it is Sciatica. Hopefully that is all it is.
I am looking forward to having a few clear scans before I can fully relax and look at the future without the worry of TC in it.

cheers
Trent