it normal to feel scared? or am i just over reacting?

[twitch77]

so i got diagnosed about a month ago, had surgery and now go for my pre-op (i think that's what they called it) appointment for radiation therapy on monday morning.

now through this entire time. . .not once have i felt fear. not even the day of surgery, i had no worries at all. . .i actually felt quite calm and relaxed that day.

but my mom informed me today that the docs called today and set up my appointment for monday, and that it was likely that i'd start treatment this coming week.

and it's all just hit me today. i just feel emotional about this whole thing. up to this point i've always been stable and calm. . .i cared, but i was never sad about any of this.
today i am though. i don't want any of this, i guess maybe i'm just pitying myself. i don't know.
and it doesn't help that i live in a small town in wyoming, and the closest place that can provide radiation therapy is about 240 miles away from me. . .now my insurance is really cool and is willing to put up 50% of a hotel for me. . .which is great, but it's still going to be very expensive for me the next month. . .and my life will have to go on halt for awhile.
and i'm just so sad about it.
i'm not an emotional person. . .it's hard to make me sad. but i just can't help but to be emotional right now.

is this normal? or am i just over reacting?
i mean all of you have been through this, and it's not even like radiation therapy will be bad with side effects for me (from the research i've done). . .so i'm not quite sure why i'm so emotional just now about this.

i don't know, i'll regret tryping this post tomorow, just felt like venting a bit i guess.

i hope you guys are doing okay with your treatments. i really do.
take care guys.

[mil]

hey there, it is normal to be scared so don't worry and don't apologize. i've "vented" on here too a few times..... it's so great to have this board full of caring people who listen, care and most importantly, understand. this is a disease that no 20 or 30 year old should have to deal with (no one should, but i just mean it's especially cruel at such a young age). thankfully it's a really "good" cancer to have because of its extremely high cure rates, you know this i'm sure. still, i know that treatment can be disruptive to life and seem unfair to have to deal with, especially with so many other things going on, and so many other 'healthy' friends around you. don't apologize for being emotional... it's totally understandable. just keep your strong attitude in general and keep reminding yourself that soon the radiation will be over and you'll put it BEHIND YOU and mooooooove on! (what is your pathology, and stage by the way?). my partner never had radiation but he had chemo and physically handled it very, very well. i am hoping that your radiation goes just as well and soon you can be back to 'normal' life! cancer sucks so much ass but just hang in there, you will beat it and be fine. keep us updated, good luck

[Davepet]

is this normal? or am i just over reacting?

There is no "normal" when it comes to how you feel about cancer & your treatments. Cancer affects each individual differently. Delayed reactions are not uncommon. There are resources available if you are having serious difficulty, do not hesitate to use them.

Please continue to use this forum to vent, it may be all the help you need to just get it out & talk to folks who've been there.

Talk all you want & we'll help all we can.

Dave

[Paul54]

Sorry you have to join us but you found the right place. Cancer sucks and it is scary, which means you've earned the right to feel whatever you want to, and vent, and ask tons of questions. Once you are over the initial shock, you can focus your time and emotions on getting whatever treatment you need, recovering, and getting back to a normal life. You will be a Survivor, and there are lots of us around.

Can you give us a little more info about the test results, pathology and staging? You mention radiation. From that, we assume your pathology showed pure seminoma. Is the radiation for adjuvant (preventive) reasons or do you have signs of spread into your abdomen?

[twitch77]

okay now i feel like an idiot.
i don't even know what a pathology is to be honest. my doctor hasn't given me any papers on any of the tests i've had done.
then again i never asked for anything (i never even thought to).
i've only seen 1 of the doctors once since having surgery (saw him a little over a week ago) and he just basically told me he was going to set up an appointment with another doctor for radiation therapy.
he also mentioned the possibility of chemo, but he was brief about it, and acted like he was in a rush (lol i felt like i was wasting his time, even though i wasn't asking him anything).

he also told me he sent some of my blood sample to a facility in minnesota, and was still waiting for result for that.

now i must confess, i'm not the kind of guy who asks many questions, or complains about things. i just go with the flow, and if i'm working with professionals (doctors in this case) i accept that they know much more about things then i do, and i just let them do their job. i don't feel the need to really question them, nor do i feel a need to understand everything going on.

i do know he mentioned to me that it was indeed seminoma, and i have no signs of spreading from the 2 ct scans i had (1 to my abdomen and one of my chest).

how would i go about getting my pathology?
i have 2 main doctors right now. one in the small town where i live (who is more of a family doctor) and my main doctor over looking my treatment plans who is in the town that's about 240 miles away (he does come to my town about twice a month).

i just never thought to ask for a record of any of this.
but now that you guys ask, it feels like i should know this. . .and go over what the numbers mean.


this whole past month has just been a complete daze to me. like i've just been sleep walking.
i've always been healthy. . .and even when i do get sick (which is rare for me), it usually lasted no more then 2 days and i'd be back to normal.
i guess it's just one of my ways of protecting myself? i kinda shut off emotionally when under stress. . .none of this effected me much. then out of nowhere it's all started to dawn on me today.

and thanks for the support guys.
i have so much respect for each of you who have, and who are going through this. i just hope you can keep your chins up, and don't let yourself get too down.

[dadmo]

twitch77:
The pathology report is really nothing more than an explanation of what the lab found when they examined the tumor in the testicle and information regarding what the docter saw during the operation. The path report will give the composition of the cancer by percentage and type of cell. This along with the blood work and scans helps determine how best to treat you. To get copies of the pathology and results of the blood work all you should have to do is ask.

Oh, and feel free to vent away, we're good listeners.

[Aegean]

If it is indeed 100% Seminoma and no signs of spread, you are Stage 1. Which means you have the option of Single Dose Carboplatin and Surveillance. Since facilities for surveillance seem to be far away, perhaps doing the carbo would be the better option. It will only take a day and not a month and is now the preferred treatment at many Centres of Excellence. Radiation is the textbook, knee-jerk reaction of many docs because they do not see TC often. There is nothing wrong with it, but it does carry risks that may be more acute than carbo 20-25 years down the road. Radiation and carbo are just as effective, while carbo is theorized to haveing the added benefit of possibly reducing risks of TC in the remaining testicle (jusry still out on that one). The important thing is that the carbo infusion would fit your schedule much better than radiation.

My preferred choice would be surveillance if you are Stage 1A, but is that is not possible due to distance I would go the carbo route. Either way, talk it over with your doc, preferably with a medical oncologist and have them talk to someone from Dana Farber or Sloan Kettering or Indiana if they have doubts.

[twitch77]

thank you Aegean, you gave me a nice eye opener.
the biggest thing stressing me about the radiation. . .is that in order to go through with it, i'll pretty much have to live in a hotel room for the duration of the treatment (or i could drive there and back each day. . .but i'm simply not willing to pay that much in gas, nor does the idea of traveling 6-8 hours each day in anyway seem okay with me).

before today i was okay with whatever my doctor wanted to do. i felt confident in his judgement, and was fine with his treatment plans. but now i'm starting to question just how okay i am with everything.

but now i have my pre-op appointment on monday morning. i need to go down there and get tattooed and everything else they need to do to prepare for radiation treatment.

i would very much so be open to chemo though.
now i know chemo has a much higher risk of some pretty nasty side effects, but there's a town just 30 miles away from where i live where i can get chemo treatment.

i feel childish for being so trusting through this process right now. i just felt really confident in my doctors. they're all great guys, and they all seem quite experienced.

do you think if i called my doctor this morning and left him a message (friday morning). . .it'd be too late to discuss my treatment options?
do you think it'd piss him off? lol he's already gone ahead and set up everything for radiation. . .and i do have alot of respect for him, i don't feel like pissing him off.
i guess it's time for me to step up and start making my own decision. to stop blindly trusting in everyone else, and start trusting in myself, and going with what i feel is comfortable (of course i wont be ignoring the professionals advice, but it is my life. . .i really need to start involving myself more in this).

[Kiwi]

Mate - ups and downs are fairly normal. But you have found a great place to ask questions. Keep asking and I am sure that you will be ok.

As is a stage one seminoma the radiation is a prevantative thing and should not be a huge amount. Take it easy and you will get though all this. The Radiation process is not that dramatic either. Hey you are likely to get you first Tattoo! I've got 3 small dots for the radiation alignment.

Cheers

Kiwi .

[twitch77]

Hey you are likely to get you first Tattoo!

Cheers

Kiwi .

dear god, my mom's going to kill me!

[Aegean]

I do not want to influence you against your physicians, but carbo is often referred to as "chemo-lite" as it is a much weaker form of chemo than 3xBEP or 4xEP which are standard protocols for other forms and stages of TC. Carbo does not have the same side effects, if any.

Here is a carbo diary by DetailDevil and here is one by K&R.

If you do decide to go ahead with carbo (I was due for may tats and then my oncologist had a talk with me about surveillance so I cancelled the appointment) you just have to say so. The long term risks with carbo for now seem low based on current studies by Oliver & Co. It is very promising, but I have to tell you that RT has been the gold standard for decades and that is why old time docs recommend it. There are associated risks with such things as colon cancer and others longer term, in terms of RT too.

After I/O you have 6 to 8 weeks to get treatment, otherwise you are on surveillance by default.

[Aegletes]

Twitch,

The anxiety and fear that accompany a cancer diagnosis and treatment can come at odd moments so your reaction now is by no means unusual. I will say it's much better to acknowledge those fears than to keep them bottled up. Do you have people in your life with whom you can share those fears and who will listen and support you? It's very important to have a support team on your side.

As for the clinical side of things, a lot of guys just go with the flow and leave things in the hands of, to use your word, the professionals. While that might give you some peace of mind, I'd like to suggest that you'd have even more peace of mind, experience less anxiety, and ultimately get the best care possible if you ask questions, get copies of your records (pathology, lab results, CT scan reports), have someone with you at your office visits as a second set of ears, and get more engaged in your own health care. Being a passive observer in your own health care might be the easier thing to do, I'm not sure it's the wisest. After all, it's your body and your health we're talking about. Nobody is going to care about it more than you do.

This is particularly important with respect to what your next steps are. Assuming your pathology is indeed stage 1A seminoma, you have choices that are ultimately very personal and, given the state of the evidence, subjective to a large degree. In other words, what you do next should be your decision, not the doctor's. You have the choice in the case of stage 1A seminoma of adjuvant radiation therapy, adjuvant carboplatin, and surveillance. The first two would still require a surveillance regimen but one much less frequent and prolonged than surveillance alone. Radiation is a therapy that has been around for quite some time, involves minimal discomfort, does require a commitment of two to three weeks, and has been associated with increased risk of secondary solid tumors later in life, although just how serious those risks are, in my own opinion, requires some qualification because of the different treatment fields and the fact that radiation dosages have changed over the many decades XRT has been in use. Carbo is a newer, much more convenient adjuvant therapy but whose long-term risks vs benefits are less well known in comparison to surveillance alone or radiation. Many centers now advocate surveillance alone since the inguinal orchiectomy alone is mostly likely curative. My own oncologist at Sloan-Kettering, which has a reputation for being aggressive in treatment of cancer, advocates surveillance alone. Surveillance alone has the downside of requiring more frequent office visits and radiological testing than would either adjuvant approach so having a rock-solid insurance coverage and the discipline to stick to the surveillance protocol are crucial. If you think you won't be able to adhere to the surveillance regimen or the anxiety that you might experience as a result of it, you may wish to consider adjuvant therapy.

The preceding paragraph is but a brief outline of the many factors you need to consider, factors requiring you to weigh relative risks, your tolerance for doctor visits and testing, financial matters, and your general risk aversion. These are all very personal and no one here can tell you what the right answer is. We've all had different experiences and, as someone who has had seminoma twice, I still can't tell you what the right answer is. What I will say, though, is that this is too subjective an issue for you to leave in the hands of a radiation oncologist. You should be referred to a medical oncologist with experience in treating testicular cancer patients and who will review all the pros and cons I mentioned above with you. The oncologist may even request to have the slides of your testicle sent to his or her lab for a second pathology just to be sure of the cell type.

I know this is a lot to throw back at you but your health is your responsibility in the final analysis. Please don't outsource it. Get involved and get informed and please reach out to us. We're all here to help.

Alex

[Aegletes]

(...)
do you think if i called my doctor this morning and left him a message (friday morning). . .it'd be too late to discuss my treatment options?
do you think it'd piss him off? lol he's already gone ahead and set up everything for radiation. . .and i do have alot of respect for him, i don't feel like pissing him off.(...)

Dealing with doctors, particularly experienced ones, can be intimidating. But I'll offer you a story from my first testicular cancer experience. I went back to my urologist after having had the ultrasound and CT done after my first office visit. The ultrasound, needless to say, was conclusive so all the urologist was prepared to do was tell me my surgery date and send me on my way. Not so fast, doc. I pulled a list of questions out of my pocket and proceeded to quiz him on everything (recovery, impact on testosterone, next steps, etc.). After a few questions he stopped me. "You sure have a lot of questions" he said impatiently. "It's my body, not yours. I'm sure if somebody were slicing you open, you'd have a few questions too" I replied. He was much more cooperative after that.

It's your body. These are your decisions. Your doctor has the responsibility to tell you if what you're doing is clinically advisable or not. But he cannot berate you for simply asking questions so you can make informed decisions.

[twitch77]

dam lol. well i do certainly have a lot to consider.
to be honest with you, i liked it much better when i wasn't worried about anything and i just went with the flow lol.

i'll have a sit down with my parents a bit later today and discuss everything with them.
i have amazing insurance coverage and though i haven't had to lean on my insurance much over the years. . .man are they stepping up for me now. it's very comforting to know that i'm well covered.

i'm just feeling a bit stressed out today, and i think i'm over analyzing things (which i seem to do a lot).

i'll sit down with my parents, discuss with them my worries and concerns about my current treatment plan (radiation), and go from there.
i'm not in any way worried about the radiation itself. i've done a bit of resarch online, and from everything i've read. . .it's a painless, simple procedure. so i'm not stressed about that.
i'm just worked up a bit about having to relocate for such a long period of time for it.
then again, it really wouldn't be that bad in the grand scheme of things to get away for awhile, especially if it's getting away so i can improve my health.


i can't thank you guys enough for letting me get all this out. it always feels good to just open up get my thoughts out there, and i'm feeling so much better today then i was yesterday.
yesterday i was just sad and emotional.
today i feel ready to get a better handle on my life, and start making more active decisions.

i hope i'm not coming across as a big cry baby, or coming across as ignorant.
i'm just a newb to this whole tc thing lol .


p.s.

If you think you won't be able to adhere to the surveillance regimen or the anxiety that you might experience as a result of it, you may wish to consider adjuvant therapy.

this will not be an issue.
i'm committed to getting past this part of my life, no matter what route i end up taking to get there.

and

Dealing with doctors, particularly experienced ones, can be intimidating. But I'll offer you a story from my first testicular cancer experience. I went back to my urologist after having had the ultrasound and CT done after my first office visit. The ultrasound, needless to say, was conclusive so all the urologist was prepared to do was tell me my surgery date and send me on my way. Not so fast, doc. I pulled a list of questions out of my pocket and proceeded to quiz him on everything (recovery, impact on testosterone, next steps, etc.). After a few questions he stopped me. "You sure have a lot of questions" he said impatiently. "It's my body, not yours. I'm sure if somebody were slicing you open, you'd have a few questions too" I replied. He was much more cooperative after that.

that just made my day haha. great going man!

[Aegean]

You are not a cry baby at all. You are simply taking the necessary steps to make an informed decision. Asking these questions now is one of the best things you could do. It is you health/body and you need to know that you are lucky enough to have options. Everything we have discussed thus far is on the assumption that you have pure seminoma with no other components (I will be honest with you, at your age that is quite rare, and I would want to make sure that it is truly that... not throwing another wrench in there, just suggesting that you get a copy of the path report emailed or faxed to you today).

Again, make sure that you explore your options. A few days will not make a diff. but a few weeks could.