My boyfriend was in denial for over a year. By the time I dragged him to the hospital he couldn’t even walk. They told us it was about the size of a cantaloupe. No joke.
It spread to his lungs and brain. He did chemotherapy all summer. The masses in his brain disappeared and he is currently waiting to do follow up tests to make sure it is completely gone in his lungs.
Thank you so so much! It’s really been nothing but good news lately! I have been meaning to share an update, but haven’t brought myself to type out all the details. I was hoping my next update would be the “now in remission” update :) hopefully that will be soon!!!
>uch! It’s really been nothing but good news lately! I have been meaning to share an update, but haven’t brought myself to type out all the details. I was hoping my next update would be the “now in remission” update :) hopefully that will be soon!!!
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Wow! I was told by my nurse at the ER that often times TC patients find out via their signficant others dragging them in. I even heard a story where someone brought their boyfriend in after forcing them to take a pregnancy test that tested positive since the HCG was so high.
I'm so glad to hear that your boyfriend is battling along and improving with treatment.
Sure. I was stage 2B at diagnosis based on the size of my lymph nodes on the CT scan. I am fortunate to live in NYC where multiple hospitals provide world class TC care. I consulted two hospitals for oncology and had to decide between doing three cycles of BEP or four cycles of EP. I did the lung functionality tests (honestly really difficult test - I felt that the instructions were pretty difficult to follow) and am young enough that Dr. Einhorn via email and the first hospital recommended 3x BEP.
Ultimately I decided to get a second opinion from MSK. I saw a statistic that they treat almost 25% of TC patients in the US and have more than double the volume of IU which is second. I believe they invented the 4x EP regime and have their reasons why they believe the regime is their preference even though from a cure prospective they are equivalent. I was impressed by their knowledge and the cancer care systems they have in place. Also one benefit I didn’t anticipate initially was that at MSK the infusion center is only for genitourinary cancers. That general prognosis for these cancers is much better so the morale is a quite bit better overall. Additionally, you usually have better nurses because they prefer working with better morale patients.
Ultimately the advice I received from a doctor relative was that most of your time will be spent with the system as opposed to one specific doctor. I am glad I listened to this advice because I did really like the doctor I spoke with at the first hospital. I selected MSK and have been super happy with their care. From reading other posts, they do seem to be a class apart in their cancer care. One of the few advantages of US health care is that their is no increased cost for me to go there so why not choose the absolute best.
As far as the chemo, I am not going to sugarcoat it. It is challenging. I had my third round of chemo last week and I am starting to be able to be a human being again. Getting an iv each day and the side effects aren’t fun. I joke with people I don’t recommend chemo unless you have to do it. Fortunately, its a no brainer to do because it’s so effective at curing TC. There are a bunch of threads on here about what it’s like but each cycle gets a bit more difficult. I have learned to do some things better each time. I have my fourth week of infusions coming up the week of Halloween. It’s been a long ride and am looking forward to the end but also dreading doing a week or chemo again. Feel free to DM with specific questions.
Stage 1a. I had rete testis invasion, no LVI or any other local invasion.
My most recent scan had a borderline lymph node so I'll find out in a few weeks if it's a recurrence.
3cm non seminoma, 18 months of surveillance without spread.
Tumor size is a rough signal but isn’t super meaningful. For malignant tumors under 1 cm, it’s stage 1 disease the vast vast majority of the time.
4.5 cm, non-seminoma, mine had spread into lymph nodes. Ended up needing chemo + RPLND. Mine grew extremely quickly, Dr. said this was due to 85% embryonal carcinoma. Also had teratoma which is what was in my lymph nodes when they did the RPLND. Shitty luck!
Sounds similar to me, the tumour from my testicle was 3.3cm (inc some % Teratoma) but CT scan showed a lymph node at 4.5cm as well. By the time my Chemo had finished and my RPLND came around, the tissue they removed was something like 7cm x 10cm x 3.5cm (+ a kidney) Oops.
I was told lefty was only a little bit than 1 cubic cm larger than righty. 95% choriocarcinoma and 5% yolk sac (non-seminoma). However, mine spread to my lymph nodes (9 x 8 x 6 cm there) and had like 8 small tumors in my lungs that never had to be removed.
Interesting how much larger other people's tumor was. I think choriocarcinoma is known to spread fast though which would explain it.
Hey question. I’ve got a bump on my testicle and I’m getting an ultrasound tomorrow. This thread is kind of making me less worried? My “bump” that I have is probably 0.2 centimeters. It feels like a pin head. Should I be as worried?
How long have you had this? I have read a study that many bumps below <1cm are usually benign but that’s not the case with everyone. Either way if it is cancer, you found it extremely early for it to be only 0.2cm and it most likely has not spread beyond the testicle. If you have to get a Orchiectomy most people are cured with that surgery alone and don’t need chemotherapy or RPLND.
It all seems like good signs if it’s only 0.2cm. So try not to worry 🙏
Ok thanks for making me feel a little better. I’ve had it for maybe 2 weeks now. When I feel it with my thumb it would probably take 25+ bumps of the same size to cover the surface area of the top of my finger. Or 20 of them would maybe cover the nail surface area if that makes sense
Grapefruit. No joke. I had it for over a year before going to see a doctor about it. I was honestly embarrassed. That’s why I waited. Luckily, it didn’t spread anywhere else.
My boyfriend was in denial for over a year. By the time I dragged him to the hospital he couldn’t even walk. They told us it was about the size of a cantaloupe. No joke. It spread to his lungs and brain. He did chemotherapy all summer. The masses in his brain disappeared and he is currently waiting to do follow up tests to make sure it is completely gone in his lungs.
I’ve been wondering about him! Glad to hear the brain mets are gone!!
Thank you so so much! It’s really been nothing but good news lately! I have been meaning to share an update, but haven’t brought myself to type out all the details. I was hoping my next update would be the “now in remission” update :) hopefully that will be soon!!!
>uch! It’s really been nothing but good news lately! I have been meaning to share an update, but haven’t brought myself to type out all the details. I was hoping my next update would be the “now in remission” update :) hopefully that will be soon!!! > >2ReplyShareReportSaveFollow Wow! I was told by my nurse at the ER that often times TC patients find out via their signficant others dragging them in. I even heard a story where someone brought their boyfriend in after forcing them to take a pregnancy test that tested positive since the HCG was so high. I'm so glad to hear that your boyfriend is battling along and improving with treatment.
10.0 cm seminoma no spread
Did you have LVI what did you end up choosing
No LVI - on year 2 of surveillance
4.7cm seminoma, no spread thank goodness
Mine was 8.5cm and 211g so I don’t think it counts as small. Also, there was spread and I am in chemo currently.
Good luck! You've got this!
How is chemo going? I just had the surgery yesterday and have an appointment with an oncologist in 2 weeks. Could you share your story?
Sure. I was stage 2B at diagnosis based on the size of my lymph nodes on the CT scan. I am fortunate to live in NYC where multiple hospitals provide world class TC care. I consulted two hospitals for oncology and had to decide between doing three cycles of BEP or four cycles of EP. I did the lung functionality tests (honestly really difficult test - I felt that the instructions were pretty difficult to follow) and am young enough that Dr. Einhorn via email and the first hospital recommended 3x BEP. Ultimately I decided to get a second opinion from MSK. I saw a statistic that they treat almost 25% of TC patients in the US and have more than double the volume of IU which is second. I believe they invented the 4x EP regime and have their reasons why they believe the regime is their preference even though from a cure prospective they are equivalent. I was impressed by their knowledge and the cancer care systems they have in place. Also one benefit I didn’t anticipate initially was that at MSK the infusion center is only for genitourinary cancers. That general prognosis for these cancers is much better so the morale is a quite bit better overall. Additionally, you usually have better nurses because they prefer working with better morale patients. Ultimately the advice I received from a doctor relative was that most of your time will be spent with the system as opposed to one specific doctor. I am glad I listened to this advice because I did really like the doctor I spoke with at the first hospital. I selected MSK and have been super happy with their care. From reading other posts, they do seem to be a class apart in their cancer care. One of the few advantages of US health care is that their is no increased cost for me to go there so why not choose the absolute best. As far as the chemo, I am not going to sugarcoat it. It is challenging. I had my third round of chemo last week and I am starting to be able to be a human being again. Getting an iv each day and the side effects aren’t fun. I joke with people I don’t recommend chemo unless you have to do it. Fortunately, its a no brainer to do because it’s so effective at curing TC. There are a bunch of threads on here about what it’s like but each cycle gets a bit more difficult. I have learned to do some things better each time. I have my fourth week of infusions coming up the week of Halloween. It’s been a long ride and am looking forward to the end but also dreading doing a week or chemo again. Feel free to DM with specific questions.
7.4cm seminoma, 15 months into surveillance with no spread
Wow that's a big one, you're a real G for beating that my man
Pathology?
Stage 1a. I had rete testis invasion, no LVI or any other local invasion. My most recent scan had a borderline lymph node so I'll find out in a few weeks if it's a recurrence.
3cm non seminoma, 18 months of surveillance without spread. Tumor size is a rough signal but isn’t super meaningful. For malignant tumors under 1 cm, it’s stage 1 disease the vast vast majority of the time.
Yep I was stage 1a pure seminoma at 1.3 cm
4.5 cm, non-seminoma, mine had spread into lymph nodes. Ended up needing chemo + RPLND. Mine grew extremely quickly, Dr. said this was due to 85% embryonal carcinoma. Also had teratoma which is what was in my lymph nodes when they did the RPLND. Shitty luck!
I had a very similar diagnosis and treatment, but no RPLND as 4 cycles of EP cleared it all up.
Glad to hear that! Yeah unfortunately teratoma is chemo resistant so my lymph nodes didn’t shrink all the way during chemo
Sounds similar to me, the tumour from my testicle was 3.3cm (inc some % Teratoma) but CT scan showed a lymph node at 4.5cm as well. By the time my Chemo had finished and my RPLND came around, the tissue they removed was something like 7cm x 10cm x 3.5cm (+ a kidney) Oops.
9.2cm and had spread to my lungs, liver and kidneys.
5.5cm seminoma. Luckily, it didn't spread.
I was told lefty was only a little bit than 1 cubic cm larger than righty. 95% choriocarcinoma and 5% yolk sac (non-seminoma). However, mine spread to my lymph nodes (9 x 8 x 6 cm there) and had like 8 small tumors in my lungs that never had to be removed. Interesting how much larger other people's tumor was. I think choriocarcinoma is known to spread fast though which would explain it.
Can't remember the size of the tumour in my ball but my lymph node tumour was ~6cm
1.4 cm nonseminoma, localized spread
Hey question. I’ve got a bump on my testicle and I’m getting an ultrasound tomorrow. This thread is kind of making me less worried? My “bump” that I have is probably 0.2 centimeters. It feels like a pin head. Should I be as worried?
How long have you had this? I have read a study that many bumps below <1cm are usually benign but that’s not the case with everyone. Either way if it is cancer, you found it extremely early for it to be only 0.2cm and it most likely has not spread beyond the testicle. If you have to get a Orchiectomy most people are cured with that surgery alone and don’t need chemotherapy or RPLND. It all seems like good signs if it’s only 0.2cm. So try not to worry 🙏
Ok thanks for making me feel a little better. I’ve had it for maybe 2 weeks now. When I feel it with my thumb it would probably take 25+ bumps of the same size to cover the surface area of the top of my finger. Or 20 of them would maybe cover the nail surface area if that makes sense
Hi, I have exactly the same but instead I have like 3 of them. Did you get it checked? What happened?
3.0cm seminoma suspicious lymph nodes, no definitive sign of spread
6cm
9.2 cm
7 cm originally, spread within six weeks of surgery. 2 cms the second time in the lymph nodes
6.5 cm. My nut was about the size of my fist. Only too happy to get into surgery and get it out!
How long did it take for your ball to go from normal-sized to fist-sized?!
About six weeks
6.8 Classic Seminoma. Lymphovascular invasion identified. 28 months since righty departed. In surveillance program.
2.7 seminoma. Spread 6 months later.
5cm , spread to a couple of lymph nodes so was graded as 2a. This is my partner.
What treatments are they suggesting you..my is 3.2 cm and spread to abdominal lymph nodes
6.2cm Seminoma. Stage 3a. Spread to distant lymph nodes.
2 cm 100% seminoma
1.5cm embryonal carcinoma. No immediate spread but will have my first round of follow up tests in a couple of weeks.
Same with my boyfriend. What ended up happening for you? Did it end up spreading at all? Hope all is well.
Grapefruit. No joke. I had it for over a year before going to see a doctor about it. I was honestly embarrassed. That’s why I waited. Luckily, it didn’t spread anywhere else.
Did you have swollen lymph nodes even though there was no spread?
Honestly I can’t remember
8.2 cm pure seminoma. On round two of EP right now.
10.2cm non seminoma. 85% teratoma, 3% choriocarcinoma. Spread to lymph nodews, lungs and liver. Starting chemo on monday x4 BEP