The unfortunate task of introducing myself

[guitargoalie]

Well I didn't want to be posting in this forum, obviously nothing against anyone else but after losing both of my testicles in less then two years I am pretty angry about the situation.

So to start my name is Jason. Back in February of 2007 when I was 21, I found a lump on my left testicle and had to go to the emergency room (no insurance) After seeing that doctor I was given anti-biotics and told that if it didn't go away in 2-3 weeks then it might not be an infection. Well needless to say it wasn't an infection and I was diagnosed with testicular cancer, I then had that testicle removed. After the pathology reports from the lab I found out it was made up of three different types of non-seminoma's (I don't just do something I apparently go for the gold). After this I followed it up with two rounds of chemo.
I was diagnosed as clear after that chemo in August of 2007.
Well fast forward to early December of 2008......... I obviously have been very paranoid about having the cancer reoccur so I fondled my remaining testicle every few weeks to check for lumps, I found a lump on this occasion. I quickly went in to have blood tests, a CT scan and a ultrasound. Prognosis? yup testicle cancer again. So about a week after being diagnosed I had my right testicle removed. This time the pathology reported that it was a seminoma cancer. Forgot to mention that both times the cancer was only in the testicles and had never been confirmed as spreading outside of them, I've never had anything show up on a CT scan.
Since the day of surgery I have been using Andro-gel with decent results, I actually feel pretty normal most days and don't have any odd side effects. To be honest I feel better physically now then I have in quite sometime. Mentally I am a total **** show and can't tell whats up or down these days.

I was suppose to go in for two rounds of chemo this past Monday, I got myself in that chair, got hooked up to the IV and started taking the usual saline solution to start. Well I flipped out, just about ripped the needle out of my hand and ended up having a heated discussion with the doctor and nurse for a good 15 minutes. I don't think I solved any problems here and I felt bad because my nurse has been nothing but a sweet heart through times I have had to do chemo.

I can't bring myself to get chemo again, if I so much as smell the hospital I get dry heaves. I don't get this because the first time around I just showed up for my chemo everyday, drink a ton of water and just dealt with it!

This is quite a ramble of thoughts but I just wanted to get it all out there, I am sure you guys know all to well just what I mean..................

[Scott]

Sorry to hear all you've been through, Jason. Glad you found us.

Did your doctors talk about other treatment options with you, including surveillance?

[guitargoalie]

Hey Scott. Yeah the doctor did mention surveillance but he said it really shouldn't even be considered, he feels like I would be asking for trouble if I was to just sit and wait.

How did you go about getting treatment and such with your bouts with cancer? I'd kind of like to get a feel for what other people have done and how it has worked in the long term.

[Karen]

Welcome, Jason. If the seminoma showed no signs of lymphovascular invasion you should have been given the choice of surveillance. I'm normally of the hit it fast and hard mentality with cancer, but you've already been through chemo once, and unless you really need it now you may luck out and not need it al all. Anything about the tumor size that made the docs want the chemo?

[Karen]

If the doc said it shouldn't even be considered yo may want to get a second opinion. Surveillance is a very plausable option for stage 1 seminoma.

[Already Bald]

Hi Jason. I hope you are feeling better soon.
Did your doc give you any indication as to what would happen if you choose not to go through with chemo?
At least there is one thing you can be happy about, you don't have to worry about a second primary in your other testicle anymore- no more stress on that issue.
There are mant TCx2 gyus here that may be helpful to you on HRT.

I hope you seriously consider a calmer conversation with your doc, and maybe you should bring a supportive person with.
Best,
Joe

[guitargoalie]

Well thats what I am not sure about. Pathology said that the margins looked clean and that it had not spread past the testicle. The first time around my cancer markers stayed slightly elevated after surgery so I felt like it made sense to get the chemo done.
This time I am not so sure from what I understand there were next to no elevations in the marker levels and they have not risen in the month or so since surgery.

I think the doctor just feels like it's the safe bet in the situation instead of it coming back. I feel the same way to a degree but I can't seem to get my self in a good enough spot mentally to do chemo again, my skin crawls when I even think about it.

[MRMRSU]

Hi Jason: A hearty but heavy welcome to you. It's just a rotten set of circumstances, for sure. I'm so very sorry.

I'm glad that you are able to post here...to an audience who has gone through the same head trips. I hope that you will find comfort in knowing that we have a number of members who are 2X warriors who are always so very generous in speaking about their experiences and sharing their knowledge. I very much have to agree with others who have posted for you thus far that surveillance in this case would be a very, very good option...especially with the absence of LVI. Also, I second Karen's suggestion for a second opinion. Best of luck to you.

[mahalomom]

Hi Jason,

I'm so sorry to hear what you've been through - twice! It's ok to freak out sometimes. We all do it....only some of us admit it. I would think that a freakout would be pretty normal. Now it's time to wipe the dust off your butt and move forward. Get a second opinion and take control of this. You can do it.

Lots of cyber support,
Mary Ann

[Smartie]

Hi Jason. Sorry to have to welcome. I may have had a similar reaction to yours when I was having my BEP chemo. I remember going in for a bleo shot and just sitting in the chair weeping uncontrollably. All the staff looked embarrassed, but I couldn't stop...I guess I just reached to point when I couldn't handle any more.

I assume the chemo you were going to have was carboplatin? It may be a good idea to look through a few threads here, such as this one (http://www.tc-cancer.com/forum/showthread.php?t=9050) or this one (http://www.tc-cancer.com/forum/showthread.php?t=8135) where other members have detailed their carbo experience. As I'm sure you know, it's not as onerous as BEP. Despite your reaction the other day, you may feel better able to handle it in a week or two.

As everyone has said, you should also be a good candidate for surveillance. Radiation should also be an option.

All the best.

[Kiwi]

Hey Jason

These would have been a very tough couple of years for you. Sounds like we need to work on getting you mentally positive and although it might not seem like it now you will be able to get on with your life, try to look forward..

Any questions let us know. There are a number of x2 Warriors here (like me) and others in the team that can offer support.

Kiwi :) :)

[Scott]

Hey Scott. Yeah the doctor did mention surveillance but he said it really shouldn't even be considered, he feels like I would be asking for trouble if I was to just sit and wait.Did he tell you why? It's a standard option for stage I seminoma.

[Aegletes]

Another 2x TC guy here and I really identify with the anger you must feel at having to go through this again. I'm glad you're on TRT, particularly as some other TC 2x guys here have reported having doctors who weren't fast enough getting them on TRT. My advice there, though, is to make sure your doctor does follow-up with respect to your hormone levels in a few weeks to make sure your dosage is effective. It sounds like you're doing well, though, so that's good.

I'll reiterate what others have said. The second cancer being seminoma with no signs of invasion means you're a candidate for surveillance. The fact that you've had chemo before means that you might want to avoid any additional chemo (I'm assuming it would have been two doses of carbo) not only because of how you feel emotionally but also because you may wish to avoid compounding the long-term risks from adjuvant therapy with still more adjuvant therapy now. After all, in stage I seminoma, the IO is very likely itself to have been curative. That your doctor did not support this suggests you might want to seek a second opinion. I'd suggest a second read of the glass slides by another pathologist as well, just to play it safe.

I'll just close by offering you some hope: In time, the shock, anger and bitterness over being diagnosed a second time with this disease and now depending on medication to replace what you've lost will pass. It takes time and I know I'm not quite there yet myself, but in time you will feel better about this. In the meantime, we're all here to help you.

Alex

[Fed]

Hey dude,

I'll first address the issue with the chemo for your second presentation. The tumors you had in each testicle are completely different from each other, so the treatment protocols are likewise different. If you were stage I-A (no lymphovascular invasion) with your second TC and it was indeed pure seminoma, then surveillance is an adequate choice. It seems to me your doc jumped the gun because, and this is just abject speculation, you are a young patient, and in the experience of many doctors, younger patients tend not to follow surveillance protocols as they should and are lost during follow-up. It seems to me that you don't fit that bill given your proactive stance on doing self-exams and having found the contralateral presentation at an early stage.

As far as the mental issues, it's bad enough being hit with this once, but twice in less than two years will certainly screw majorly with your head. You have made the first good move by acknowledging that there is a problem. Your task now is to stay focused on your follow-up and trying to move on. You are completely entitled to be pissed off, heck, I'd be surprised if you weren't. You will see that in time, things do get better. Try to regain as much normalcy as you can (and I see you are doing just that, particularly with your mention of Androgel helping you feel more normal). Hang tough, and whenever you need to vent and talk to people, know that we are here.

Fed

[AdrianE]

Hello Jason,

Well, I'll start with the generic welcome and sorry that you are here. We all say it, but words sometimes don't really express how sorry we all are that another person has joined the TC X2 club. However, this forum is a great place for you to be. There are people here who have experienced every facet of testicular cancer, it really is a wealth of knowledge.

I had my diagnosis and subsequent I/O surgeries only a few months apart, and being a young (well, youngish) guy I understand the mental problems that you are going through. I am going with surveillance myself, both tumours were classified as Stage 1A so it is definitely a valid option.

I can't really comment on the chemotherapy problems, but the anger you feel is the same anger that I feel. It will take time to sort that out. To be honest I am still having a lot of issues with anger and resentment, it seems like a long, slow burn for me to get rid of it all! I think it's because this anger can't be directed anywhere. There is no one to blame and no one to attack to focus this anger on, so it needs to go somewhere. And the risk there is that is can turn inward, or worse, turn on those around you. Use this forum to vent whenever you need to, we all understand what you are going through. Feel free to message me too if you want to talk one-on-one.

Keep us updated on your progress,

Adrian

[Smerd]

Hi Jason..

As everyone here before has said..I'm sorry that you are here... I'm also another patient who has had testicular cancer twice...but I still have 80 cents left... 3 operations (I had an RPLND done) in a year can do things to your head so you are not the only one who has come on here to rant... These people are great and considered friends - even though I've never met any of them..

I also can't comment on your chemo issues as my cancer has all been stage 1 and I'm on strict surveliance with tests every 2 months for awhile.. Ask another doctor why chemo is necessary if all your other scans prove that there is nothing there... Maybe radiation/survellience can help..

Try to stay positive..it's hard I know.. but if you want..just take a toilet plunger and hit something..it helped me ;)

S

[guitargoalie]

Haven't been around in awhile so I figured I would update this.................
I went in for the usual blood tests and CT scan in march for surveillance. those both came back totally normal so I was feeling pretty good about things. Flash forward to about two weeks ago I went in for my CT and blood tests once again. Well the blood tests didn't show anything out of their normal range but the CT showed a 1.9CM sized lymphnode, meaning most likely it is cancer in the lymphnode. I decided to go to Dana Farber in Boston because I felt the care I Was receiving from my regular doctors was lacking. First on the positive note I have never felt so well taken care of and surrounded by knowledgeable doctors then I have at Dana Farber. So I have taken two more blood tests and first my HCG markers were up to 6.1 then on the second test today they were down to 5.9. We don't know what the last several were because my usual hospitals blood test can't even register markers if they are under 5.0 .

But to make it short the two doctors looking after me are 98% sure it is cancer but them and more so me are looking for a clear rise in markers before I commit to having more chemo. If and when I do the chemo I am looking at having to take 3 cycles of VIEP.

I have a real piss poor attitude about this after the first two times, I hate coming off as being negative. I just don't feel like the same person over the last year or two.

[Aegletes]

(...)I have a real piss poor attitude about this after the first two times, I hate coming off as being negative. I just don't feel like the same person over the last year or two.

I'm so sorry you're having to go through this but, at the very least, you are at least in capable hands by going to a center of excellence like Dana Farber. Our very own Fed is there. As for attitude, you have every right to be angry and frustrated at this. You wouldn't be human if you weren't. Just keep envisioning the day that this will all be behind you and you'll get through this. Hang onto the expectation that this too will pass. Meanwhile, you have a whole group of people on this forum to reach out to. PM if you just want to blow off steam.

Alex

[Fed]

Ah dude, I'm sorry to hear about the enlarged node. Given that you have had 2xBEP before, you will likely get a different regimen. Are you geting 3xVIP or 3xVeIP? These are not the same. Also, given that your second presentation was seminoma, have the docs recommended a PET scan?

Rest assured that you are in good hands here at DFCI. Like Alex said, I work in Peds Onc doing cancer biology research, and I am also a patient up in Dana 11. Let me know if you want to get together for coffee or something next time you are around.

It sucks that you are still dealing with this, but the new chemo should get rid of this once-and-for-all. Feel free to vent all you want here. This is a struggle, but you will come out stronger in the end.

[Karen]

Jason,
I'm sorry about the node, but as other have stated, you are in great hands at DFCI. Vent all you want......we are a dedicated group of cancer haters.

[Aegean]

Jason,

It's a tough hand to be dealt this so may times and you have every right to be angry... but you have to channel it toward killing this cancer SOB!!! You already did it and you will beat this again.

As for coffee and our friend Fed, be very, very careful... coffee is a loss leader and you will soon be buying him lunch... so I hear.:D

[AdrianE]

Hello there,

So sorry to hear of your continued problems! There is always someone here to talk to about it, and to blow off some steam. Keep your chin up, you can come through this again.

Adrian

[guitargoalie]

Ah dude, I'm sorry to hear about the enlarged node. Given that you have had 2xBEP before, you will likely get a different regimen. Are you geting 3xVIP or 3xVeIP? These are not the same. Also, given that your second presentation was seminoma, have the docs recommended a PET scan?

Rest assured that you are in good hands here at DFCI. Like Alex said, I work in Peds Onc doing cancer biology research, and I am also a patient up in Dana 11. Let me know if you want to get together for coffee or something next time you are around.

It sucks that you are still dealing with this, but the new chemo should get rid of this once-and-for-all. Feel free to vent all you want here. This is a struggle, but you will come out stronger in the end.

Well I am almost positive the doctor wants to go with VEIP 3x. He said he just wouldn't feel right about risking my lungs to more BEP, luckily I don't have any scar tissue on my lungs from receiving the BEP in the past.

I am sitting down with him Wednesday to discuss specifics and get me set up to start. He mentioned that I may be better off staying in the hospital for the chemo weeks because of how long I will be in there every day, lots fo extra hydration and a special medication to help prevent damage to my bladder from the VEIP.

I would definitely like to sit down for a coffee at some point, mind if I drop you a note when I have a better idea of when I will be there?

And everyone, I can't say thank you enough for the support on here, I know out of anyone you all know what this is like and can understand exactly what is going through my head. I've had a lot of bridges burn because of cancer so I often don't have anyone to talk to about this.

[AdrianE]

Hello again,

Good luck with the meeting on wednesday, let us know how it goes and what will be the course of action.

Adrian

[mahalomom]

Hi,

I'll be thinking about you on Wednesday!! Glad you're in good hands at Dana.

~Mary Ann

[guitargoalie]

I've been at Dana Farber since Monday getting my chemo done. I don't know why but it seems to be kicking my ass much quicker then the first time around.

I've had a terrible day today, just felt like garbage and can't seem to shake it. I tweaked out for no reason a few hours ago and cried like a 3 year old who got a spanking. I haven't shed a tear in 2 years and there I sat balling my eyes out in front of a nurse. No one wants to see 6'4" 240lbs dude cry, especially myself!


As there anything you guys can recomend for helping me keep my health and head together on this? any diet that would make me feel better or anything I can do to try and get through this more smoothly? I have two more rounds of this crap over the next month and a half and I need to keep it together.

[Paul54]

What are your "in" weeks? I'm due for a spin through DFCI 11th floor on August 17. Would love to stop by and say Hi. Let me know what you'd like to eat. Birthday cakes seem to be a big hit at chemo college. Doesn't even have to be your birthday. I'll bring a Survivor bib for you to fill out, and I'd be honored to put it on the dedication board at the Livestrong Challenge in Philly at the end of that week. You are and will be a Survivor.

[Aegean]

Diet is a very personal thing during chemo... feel good food is what you should be concerned about (apart from making sure that you are ALWAYS properly hydrated)... and I do mean whatever food makes you feel good (and the docs/nurses allow of course;) ).

If Paul is offering up a birthday cake... request the Turtle Cheesecake!!!

BTW... height and weight have nothing to do with breaking down... you are going through a tough regimen to kick cancers ass and, hey it ain't the 90's anymore, but it's still ok to let the softer side out bro!!!

Take care and keep us in the loop... (BTW how do you stop a slapshot with a guitar???)

[K&R]

You are going through a lot and that can explain the emotions, but maybe you should also consider that perhaps your testosterone could use a little boost. I saw in the other thread that you are on the lowest dose of Androgel, and it brings your T level up to 250 -- which at best is at the very low end of normal. I know before I started HRT I definitely had some mood swings from anger to tears. Might be something to discuss with your doc?

Kevin

[mahalomom]

Guitar Goalie,

I'm so sorry you are dealing with this. I was shocked to read that you hadn't cried in 2 years. I'm sure this horrible disease has brought most to tears...guys and girls. As Adrian said "the emotions have to go somewhere." Maybe the cry was a good thing. A letting out of sort... All the thoughts, the fight and the invasion that TC has on your body and mind... Don't feel bad or akward about the cry. Decide that it was YOU.. fighting back!

Mary Ann

[oneball]

Hey man.

I know I dont know you, but I sympathize with the whole "burning bridges" comment you made in a previous post. Unfortunately, my family seemed to crumble around me and had the oddacity to get upset with my negatively declining state of mind during treatment. That didnt help me much... Now I only had radiation (4600 rads), but I was very sensitive to it and threw up about 13 hours a day. It ruined my stomach.. I resented certain family members who seemed to not be there for me. I noticed close friends keeping there distance from me, they couldnt stand to see me in such a bad place/state of being. It pissed me off, started seeing the true nature of people. I even had an older jealous brother go off on me about what a jerk he thought I was...(perfect timing eh?) The only things that kept me focused and sane were music and marijuana. The music transformed my negative thinking into songs, and the pot helped tremendously with the vomiting:D and eating. I know what your thinking but, none of the other meds had any effect on the nausea.

I am a musician of sorts, so I would try and record some music while going through treatment. Listening to some of those songs today still triggers the nausea, wierd. Anyway, if you need someone to talk freely with, shoot me an email. You can swear up a storm. Just remember you'll emerge from this stronger than everyone around you, stronger than forged steel (thats pretty strong). I cried like a little beeyatch a few times too. Crying about cancer is a pretty ok thing to cry about.. Look at it this way, at least you werent crying because they cancelled "Friends" on NBC.... Now that would be shameful. TC puts things in perspective. You'll be 240lbs of human dynamite! Life will be cake for you after this. Stay strong. Envision yourself accomplishing your goals, and read some good books during this down time. You'll be unstopable!!

Peace - Theo