Press J to jump to the feed. Press question mark to learn the rest of the keyboard shortcuts
3

TC at 25... how am I going to afford this?

Monday went in to my doctor to check out a lump. Thursday was the ultrasound. By Friday morning I was in with my Urologist being told that I have a testicular mass that is assumed to be cancerous and I will be going in for surgery on Monday.

This all happened so incredibly fast I’ve had little time to process what this all means. This is my first surgery and the thought of chemo afterwards terrifies me. I’m trying to take that one step at a time. What scares me the most is trying to figure out how I am going to afford all of this. I would really love some advice or to hear other folks experience in how they afford their TC treatments.

I have health insurance, which covers 60% of the cost for speciality meds. I’m so worried that if I can’t pay for this up front that I will be denied the proper medication. Are there payment plans for this kind of thing for people who are of humble means?

Thanks in advance for the advice.

28 comments
100% Upvoted
What are your thoughts? Log in or Sign uplog insign up
level 1

I was there a year ago. Please don't risk your future and well being over financial worries. You will learn a lot in the next few weeks regarding the type of testicular cancer you have and treatment options. Your number one responsibility right now is to seek a medical professional that specializes in treating TC. Do not settle for any oncologist. I can't stress this enough. You will likely be referred to an oncologist by your urologist and hopefully they are knowledge with a lot of experience treating your specific diagnosis, but do not assume so. You must advocate for yourself. Your tumor pathology and diagnosis will determine what treatments you get. Just know that TC is highly treatable usually with curative intent. Once you've found your oncologist, that hospital or organization will have a social worker to help you with financial guidance and social and supportive programs. Don't be afraid to set up a donation website such as YouCaring either. One was set up for me and the response was incredibly touching. Individuals I haven't seen in over 10 years helped out. You'll get there. Just find a doctor you fully trust.

level 2
Original Poster1 point · 5 months ago

I sincerely appreciate the response. How are you doing now?

I'll take your advice. I live in Orlando and so far all of my work has gone through the Orlando Health network, which is probably the better healthcare network here in Orlando. I'll push to get the best oncologist I can find. That's relieving to hear that I'll have access to a social worker and support network. I have so many more questions than answers right now and it's just so stressful as I'm sure you know.

Thank you again for being supportive and reassuring.

level 1

I can't help with the insurance/payment stuff as I am in Australia but just wanted to say I'm really sorry to hear your news and I know your head will be spinning with a whirlwind of thoughts and emotions.

I got the same news last year and it does really knock you around emotionally. Somehow though I decided to use it to help reshape the way I felt about myself - instead of thinking of myself as weak/cowardly in my normal life, I decided I could use this major experience to feel brave for once. Now I've come out of it feeling better about what I can face in my life. Not sure if that will help or apply to others but thought it was worth sharing.

Also, as much as chemo sounds like the end of the world, it's really not. I had four cycles of BEP and each day I just sat there and chatted / played games on my phone, listened to tunes etc while I was getting it. I would get really tired later on but I didn't get any nausea or pain, it's nowhere near as bad as I thought it would be. A few weird little things happen to your body along the way but it's not dramatic.

The worst part of the orchiectomy for me was just getting used to being a hospital patient (first time for me too) and getting pushed around in a wheelchair when I could walk fine. There isn't much pain with the surgery, the recovery is quite quick.

Good luck. Happy to answer any other questions.

level 2
Original Poster2 points · 5 months ago

Thanks so much for the response. At this point it just feels great to connect with other people who have made it through this experience.

I completely understand what you mean about using this to reshape my own self image. I absolutely took my body and health for granted before hearing this news. Rather than looking ahead and feeling dread I am instead thinking about all the lifestyle choices I am going to make to achieve better health and better fitness.

It’s encouraging to hear how well you recovered! My urologist was comforting too in saying that the surgery is straightforward and even the possible chemo treatments are nowhere as bad as it could be for some other types of cancer. If you don’t mind me asking, when they caught this in you had it already spread to other parts of your body? I took a CT scan and chest X-rays yesterday so that’s the biggest unknown right now and admittedly it too terrifies me. It sounds like even when it spreads it usually responds well to the treatment. I’m remaining hopeful.

Also, how much did this change your lifestyle? I’m trying to keep the mindset that I’m going to carry on and not let this define who I am and what I can do but that it’s rather just a road bump and I’ll take it as it comes. I’m trying to remain optimistic.

Again, thanks so much for the response. It’s amazing how much a stranger halfway around the world can bring comfort to me.

level 3

Absolute pleasure mate, helping others at the hard part is the least we can do now that we have some perspective to look back on that time.

Yes, mine had spread, I was actually stage 3b. It had spread to the lymph nodes in my abdomen (first place it goes), nodules in my lungs and a lymph node in my neck. I was having strong pain in my stomach/back which is what actually got me to the doctor in the first place. I had forgotten all about my enlarged testicle by then, believe it or not.

Change in lifestyle was a big one for me actually. If I had not needed chemo, I could have been back to work quickly but because I had significant spread, I needed four cycles of chemo which took three months to administer. I don't think anyone could work during that (the start of each cycle is five days consecutive chemo) and it did make me very tired. I moved back in with mum and I am still here actually. I only had my (hopefully) last operation three weeks ago but I had some pretty big complications after chemo. They told me I was terminal at one point but I sought a second opinion and saw a more TC experienced oncologist and surgeon, and now things are looking up for me.

It's great to be optimistic, and it does help others around you cope as well and you'll get lots of compliments. I enjoyed making jokes to nurses and stuff like that. At times though I also felt like the brave thing to do was deal with the harsh reality too. I didn't like people telling me 'you'll be OK' when I didn't know if I would or not. Everyone deals in their own way though, you'll work out yours :)

level 4
Original Poster2 points · 5 months ago

Oh gosh, that must have been devastating to hear that they thought it might be terminal. I couldn't imagine. I'm glad you went and got the second opinion, though and that things are looking up!! The world is better off with you here in it.

The funny thing is that I'm not too worried about the losing a testicle part of this. It's the testicle thats usually getting in the way and being sat on so I don't think I will miss it too much. It's the thought of it spreading about that probably makes me the most nervous. Until I actually get a diagnosis I am try to not think about it too much.

How did you manage the mental stress of this all, especially during some of the tougher moments?

Thanks again for chatting. I'm so glad to be able to share this with you and hear your story.

level 1

Good luck with the operation mate. I'm in on Friday for mine, also 25.

Maybe we can trade war stories next week.

level 2
Original Poster3 points · 5 months ago

Good luck on your surgery this Friday! I'm on day two of recovery. Surgery was nothing. You'll be able to walk out of the hospital and by the next day probably won't even need the pain meds.

Let me know how it goes!

level 3

Thanks man! Currently in bed recovering. I was in surgery at around 8:45 woke up at 11ish on the way home by 12! Just recovering in the house now. Very efficient.

Now just waiting for the biopsy. Hopefully it's all been dealt with by removal.

level 4
Original Poster1 point · 5 months ago

Very nice! It's amazing what the body can handle; how they can cut you open, sew you up, and send you out the door in less than what it takes to watch a Marvel movie. Probably with less pain too haha

I was just getting over a cold by the time I had surgery so I've had to deal with a cough the past couple of days that just feels brutal to the incision area. If you have a cough or you have to sneeze I would recommend holding a pillow or something over the incision to help support it.

Hopefully everything has been dealt with and you're in the clear. Wishing you a quick and speedy recovery :) let me know what you find out from your post-op appointment!

level 5

Hey,

I’m pretty much fully recovered from surgery! Found out that it was definitely cancer. 90% non-seminoma and 10% seminoma.

Glad it’s out but I would say the biggest shock for me was that I’ve got a 50/50 chance of it’s coming back. Now need to decide whether to get 2 BEP cycles of chemo and bring the relapse odds to 2-5%. Or just go on observation (blood tests every two weeks and CT scans once every 12 weeks).

level 6
Original Poster1 point · 4 months ago

Hey man!

Thrilled to hear you're fully recovered! It's amazing how quickly you're back up and at it after a surgery like that. I was dumb and waited like two weeks to take the steri-strip tape off the incision so my skin kind of reacted to the adhesive but it's all fine now. How are you feeling, though?

It sounds like they must have caught it pretty early on if they're giving you the option of observation vs chemo. It's reassuring too that it's all very treatable through chemo. What are you leaning more towards right now? The odds after just two cycles sounds pretty fantastic.

Mine ended up being >90% seminoma, <5% teratoma, and a microscopic spec of carcinoma, so they're treating it as a non-seminoma. My oncologist was reluctant to put me on chemo unless I absolutely needed it. I was at stage 1a so the preferred method is observation, just like what you were describing. I actually didn't discuss the odds of it coming back with him if I'm opting out of chemo so I'm definitely going to chat with him later this week to find out.

Again, thrilled to hear you're doing well!

level 2
Original Poster2 points · 5 months ago

Thanks so much! Good luck to you as well! Let's definitely keep in touch. I'll let you know how things go after they cut me open on Monday. We got this!!

level 1

In a lot of cases all you will need is the surgery. Even if it has spread chemo is a good solution, although it suck's. I did BEP X 3 so 9 weeks of chemo and I was wrecked afterwards but bounced back and am cancer free.

I'm sorry about the financial worries, I'm from Australia so we don't have that issue here but all I can say find a way and get the treatment ASAP. The cost if any is future you worries.

Get healthy and be positive, there are plenty of us here who have survived and are living healthy lives.

Good luck.

level 2
Original Poster1 point · 5 months ago

Thanks for the response and sharing your story! I'm so thrilled for you that you are cancer free now. How long was the whole chemo process and how long did it take for you to bounce back?

I'm envious of your healthcare system but I've received some feedback from others saying hospitals should have social workers on hand to help guide me through the financial stuff, which is good news to hear.

Thanks for the well wishes and encouragement. It means a lot :)

level 3

Chemo is a slow burn, the first few weeks you feel pretty OK. I worked most of the time when I wasn't at hospital (either at home or work). The second cycle started to get worse and chemo days I was wrecked. By cycle three I was basically off most of the time.
If you don't know the cycles are mostly 5 day for a week then two weeks of 1 day, back to the start. So that first week becomes a killer.
I was very well cared for, my wife was a rock, we live away from family but her mum came down for the second cycle big week and my parents for that last one. It was good to have others there to help with kids and keep me company at the hospital. But I wasn't very social!
If it comes to chemo take all the meds!!!! Anti-nausea etc you will need them.
As for your question, I was probably back to full time work with in 3 - 4 weeks but really back to my 'normal' self after a few months. As I said it's a slow burn your body can handle a lot but then it needs time to recover. I was swimming, although not much, within 6 weeks I think... (like maybe 10 lengths!!!)
The surgery was really nothing - you are up and about the next day (although tender) and within a week all OK.
As I said - good luck with it all and yes we are lucky to have this health system and we fight to keep it. We pay more tax but that doesn't matter when we can get people better and back into the workforce faster and without the debt. It might sound a little wrong to some people but welfare is something that is everyone's responsibility and the easiest way to ensure we have a strong workforce is to tax us and put that into good things like schools and hospitals!

level 4
Original Poster1 point · 5 months ago

Thank you so much for walking me through all of this. I really should be taking this one day at a time but I can't help but think forward to how this will impact the next couple of months. I was informed that the chemo is also offered as an oral medication so I'm interested to see if that might be a possibility over injection. Regardless, I'm glad you're informing me for what to look out for and what to expect.

It's also encouraging to hear how well you managed the recovery of your surgery. Mine is tomorrow and I'm trying not to think about it too much. I'm just looking forward to getting it over and done with and getting this thing out of me!

I'm in total agreement with you on healthcare policy. I wish more than anything that we had a similar system where we didn't have to worry about things like this. Maybe I'll move to Australia someday to participate in that system of governance.

Anyway, thanks again for sharing all of your experiences. It really helps put my mind to ease hearing how other people were able to manage this.

level 5

Also regarding surgery (and I don't recommend this) but I think the next day post surgery (and mine was first thing in the morning so it was a good 24 hours after the chop) our Rooster was attacked and taken by a fox. Well I wasn't having that! Walking stick in hand I walked down the back paddock, yelling, waving my arms. The fox ran off and I thought the Rooster was dead for sure. But he lived to fight another day.
Point of the story is although you probably shouldn't you can do stuff pretty quickly after the surgery, just don't!

level 1

What is your insurance plan? You likely have a max out of pocket amount that you will be obligated to pay, but once you reach that amount your insurance will pay for the rest. As for the initial cost of the surgery, talk the hospital that you will begetting the surgery at in person. They will likely be able to take a down payment of whatever you can afford ad then expect you to pay the rest when you can or in installments. Make sure your doctors and the facilities you go to are in you insurance network.

level 2
Original Poster1 point · 5 months ago

Thanks for the information! I live in Orlando and my insurance is through Florida Blue. I recall that the max out of pocket expense is something like $5000. I've never really had to use my insurance for anything other than regular check ups or quick visits for cold meds so this is all new to me. Does the max out of pocket expense also apply to medications as well? It's not clear to me the difference between how the chemo treatments (injection or oral meds) are paid for and how they're covered.

level 3

In total you should not end up paying for more than $5000 then, medications, chemo, and all, but it all really depends on your insurance plan. Just be sure to stay in your insurance's network.

Also, see more then one ontologist before undergoing chemo. There is a chance that surgery will be the only treatment you need, and chemo can have long lasting effects.

How was the surgery? When do you get your biopsy results back?

level 4
Original Poster1 point · 5 months ago

Thanks for checking up! The surgery seems to have gone really well! My doctor thinks that there wasn't anything spread and he removed everything. Blood work and CT scans also came back looking nominal. Biopsy won't get back for another week or two. I have my post-op scheduled two Mondays from now so I'll find out that info then.

Even if everything looks great my urologist was recommending at least one round of chemo to bump up the odds for me. I suppose after the post-op appointment I'll be paired up with an oncologist and go from there. I'll get a second opinion for sure, though.

Thank you too for the insurance and payment information. I plan on staying within my network for everything I do. I'm fortunate to live in a city with a pretty decent healthcare network, all of which is covered by my insurance plan, so it makes finding doctors and treatment centers relatively easy. Researching all this further it is amazing how much more expensive this all becomes when you choose to go out of network.

So in the meantime I am in recovery mode from the surgery and trying to stay positive and optimistic until that post-op checkup.

level 1

I can't help with the affordability either. My insurance has covered most of it so far and I've been able to handle the fraction it didn't.

4 cycles of EP chemo (I'm twice your age) were not really that bad. No big deal really. Try to get someone to bring you to and from the hospital most days or even stay with you during treatment.

I may be just a little nervous for a while--who knows, maybe for years?--as one tumor marker after cycle 3 was low but still slightly elevated with a slight pattern upwards... TC has a high cure rate but I may be nervously watching for recurrence for the next few years.

level 2
Original Poster1 point · 5 months ago

Thanks for sharing with me your experience. When I originally spoke to my Urologist about this he said the most I'd feel from the chemo meds would just be fatigue and tiredness; compared to other chemo treatments for other cancers this one is a bit more mild. What kind of effects did you experience? How did you manage your lifestyle during that time?

I'm so glad to hear you made it through the process and you're being proactive about managing recurrence. Also when I spoke to my Urologist I recall him saying that if it ever comes back, it is treated the same way with the same expected results. Good luck, though :) be strong and be healthy!

level 3

Yes, there was some fatigue and tiredness. I took off from work--how strong the side-effects are will vary from person to person and I didn't know my side-effects would be this mild. However, managing them on top of a full work load might have been impossible. Getting out of bed or starting exercise was harder than continuing, once started. With the meds they provide (and daily ginger tea) there was hardly any nausea. There's some ache in my leg, maybe from the chemo acting on nerves already weakened from an old injury. Throughout much of the chemo and now after, I can do cardio exercise (usually at a lower level) and lift weights (usually lighter). No dramatic sign of "chemo brain". Losing most of the hair on my head and face is a dramatic outward sign but doesn't interfere with other aspects of my life.

Thanks! My tumor markers are low enough I think not to cause official concern, but lack 100% reassurance at this point! I understand there is "salvage chemo" that is usually successful but that kicks in if the AFP marker is above 25 and mine's still below 10 though slowly rising.

level 1
Original Poster1 point · 5 months ago

Haha! I’m sorry your chicken was attacked but glad to hear it lived to crow another day! I used to work on a farm so I’m quite partial to chickens.

Everywhere I’ve read online folks are typically saying the same thing; I’ll be tender and want to take it easy but I’ll be up again in no time.

Surgery is just in a few hours. I’ll see you on the backside of this! :)

level 1

Hey,

Thanks for getting back in touch! Sounds like you're also doing well - great to hear.

Looks like observation will be a good choice for you then if the doctor is advising it. And you've found it as early as possible! How have you been feeling since the results?

My mum was a nurse so thankfully told me to take the dressing off, otherwise would have been very tempted to leave it on as well.

I'm really split just now on choosing. My oncologist didn't push me either way and said it was a personal choice. I would prefer he just told me! I think mine was stage 1b as some cancerous cells were found in the blood vessels. Not sure though. Going to do a bit more research over the weekend then talk to him again on Friday.

Generally feel ok but I never really accepted I had cancer until the biopsy results. Bit scared at the thought of going through chemo. Positives are it's been caught early and I'm so glad I checked! Also that it's totally treatable!

Thanks for your positive message. Definitely helping me out.

level 2
Original Poster1 point · 4 months ago

Hey!

Hope things are going well and you're hanging in there. You're lucky your mom is a nurse! That must have been nice having her around to help take care of you. My sister is in her final year of nursing school so it was great having her around to chat about things.

How's the decision process going? Has researching provided you any direction to what choice will be best for you? I'm a bit apprehensive too at the thought of ever having to go through chemo but from everything I've read, while it still is a pretty unpleasant experience, it seems a bit milder than many other type of chemo treatments for other cancers and all the side effects seem temporary. If it means that the chances of the cancer ever coming back are dropped so low then one or two months of feeling crummy might be a worthwhile sacrifice. It's a tough decision, though and like you, I'd much rather have the doctor just tell me what to do!

Things will be fine, though! Like you noted, it's entirely treatable. Just a bit of an inconvenience but nothing that will really muck up the summer plans :) I suppose the hardest part would just be coordinating with work and school or anything like that but I'd imagine both being totally understanding.

Community Details

545

Subscribers

4

Online

This is a subreddit for questions about testicular cancer, if you are wondering if you have TC please see the sidebar for a official list of symptoms. Additionally feel free to post about your questions, stories and anything else related to TC!

Create Post
Cookies help us deliver our Services. By using our Services or clicking I agree, you agree to our use of cookies. Learn More.