• ivo's Avatar

    How early is early? How bad can it be?

    Asked by ivo on Monday, December 30, 2013

    How early is early? How bad can it be?

    Hello, I am a young men, 34 years old - athletic, no history of drugs, smoking, alcohol drinking. Fit. But, my mother died of leukemia (age 59) several years, ago. Her father died of cancer (age 47). My dad had a prostate cancer 2 years ago - has been healed.
    I have been diagnosed with testicular cancer - and my right testicle was removed just a 3 days ago. I don't have the results from the biopsy yet, but I have many questions.I hope someone will help me answer those:

    1. Is there any good active forum where members online, on a daily basis, debate their experiences with testicular cancer?

    2. What does it mean to identify cancer at an early stage? I now that I've been having pain in my scrotum for 1 year, and my right testicle - the one which was removed - had been hard at least since September 2013. Two of the three doctors that I saw over this period of time didn't realize I had cancer.

    3. CT found no problems (metastasis), but I still have lower back pain.
    Thank you,
    ivo

    28 Answers from the Community

    28 answers
    • mikecraycraft's Avatar
      mikecraycraft

      Ivo,

      I am sorry to hear that your doctors didn't realize that you had testicular cancer at first. However, the fact that your CT scans were clear are a good sign that there was no spread. Did you have tumor markers done for blood work as well? If they were elevated and drop after surgery then that is good news as well. There are several forums and email lists that would be very helpful for you, there are links to them here http://www.testicularcancersociety.org/forums.html

      Mike

      over 6 years ago
    • meyati's Avatar
      meyati

      I'm from the Viet Nam era, and lots of my husband's shipmate lost a teste. Back pain just goes with it-whether it's shot up or or has cancer. I know that you are worried about the cancer spreading, especially since you had jerks saying nothing is wrong. By the way, you can tell people that you were a secret agent, and the Taliban shot it off, and A man with one is really sexy.

      You might want to look at some other sites like Macmillan.org.uk . It's a one site that has blogs like you're talking about-everything, and you don't need to log in for each different link like ACS. csn.cancer.org might help you. I think that it has a diary place. ACS.Cancer.org-it has one link to cancer survivor for blogs.

      Things are a little bit different for me-I have a rare aggressive cancer in the middle of my face. It didn't look like any of the thousand and one pics of it. I spent about 30 years trying to get it removed. When it was removed- everyone said- Look- a cyst---before I got the lab work or stitches removed, I had cancers galore in my nose, in my lip-in between-I could see them. For 3 years, I'd sit naked and let dermatology students examine me in mass-in the hopes of getting this cancer off-it didn't hurt, and looked sort of like a pimple. I don't really have anyone to talk to about that. Most of my friends here talk about Christmas trees and dogs.

      You can talk to me any time you want.

      over 6 years ago
    • ivo's Avatar
      ivo

      Hello Mike and Meyati,
      I am not sure how to use this site as of yet so maybe I should not be answering my own question. But I wanted to let you know that I am grateful for your answers and react to your questions.

      Mike - yes, my HCG (the only marker from the four cancer markers) has been elevated - 4times higher than the norm. The problem is that the clinic where I have been treated thus far can only test for a general-aggregated HCG marker (i.e. not just for the beta-HCG) and hence I know that in September it was 2,2 and in December 8.5 (the normal range is 0 to 2.0). I don't know what has happened to the marker now as it's been just a few days after the surgery and my doctor told me it would be too soon to test for it again.

      CT scans didn't show any spread - but I do have some strange pain in the lower back and have read on several sites that this could be a symptom for trouble ahead. What is disconcerning is the fact that the pain in my lower back is only on the right-hand side (i.e. on the side to which the removed testicle connects). I feel the pain in one spot only. It's not a strong pain by any means but sitting on a chair and trying to concentrate on my daily work is not always possible.

      There are other rather strange sensations I am experiencing .e.g. I wonder whether you had any issues that you didn't expect to experience after the orchiectomy?

      I am probably just overthinking everything now. Until the results, there's probably not much which needs to be done, right?
      I should also point out..my situation is a bit silly: I am currently doing reserach in Japan and have undergone the treatment here too. But if I need chemo or radiation as a therapy, I will have to return home.

      Meyati,
      I am sorry to hear about your pain. To be honest, I might be one of the people who would probably also want to avoid talking about the disease at a great lenght..or who would prefer other things to talk about. I think it's simply because of the helplessness one feels. There's so little one can do...for youself or for the others.
      I am experiencing now that my friends don't know how to talk to me either. Some prefer to be optimistic and show no worries at all, others are showing too much of a concern. Both feels unnatural. But at the end of the day, I myself don't know right now what I want. I mean..it took my just a few days to realize how helpless one is when facing a dreadful disease. And my situation, compared to yours, is just a piece of cake. I can't even imagine what you must be going through.

      over 6 years ago
    • Clyde's Avatar
      Clyde

      First, its normal to be freaked out at this point and imagining the worst.

      Second, you need to find a cancer center to get a more in depth consultation. There has to be one where you are. Skip the small clinic thing for now.

      Have they done a node removal? I would think this is the next step to see if it has spread.

      Back pain can come from many places.

      Last, my sister's husband had testicular cancer 20 years ago, has never had a recurrence.

      But, get yourself to a trained cancer specialist as soon as you have the biopsy back to make a plan and get as much information as possible before you make a decision on treatment.

      over 6 years ago
    • meyati's Avatar
      meyati

      Ivo- there isn't any correct way to use this site-so all ways are correct ways-nothing is wrong.

      I didn't want to sound like I'm obsessed with testes, but during Operation Torch-the American invasion of French Morocco, One of the most common problems was pneumonia in the testes. In the late 1950s, when my brother was about 14, he got that.

      We just moved to that neighborhood. He was embarrassed to tell my mother that his testes were larger than grapefruit. My mom called up a church and the pastor came over, and he took my brother to the county hospital. He got one of the doctors that had been in North Africa. By that time penicillin was working pretty good. My brother had a sore back from that. The doctor regaled us with his war tales, and told my bro that he was lucky, because if any surgery had been done, my brother would have had a back ache for months.

      Your back muscles were pulled by the weight of your teste, and they hurt. The surgery further inflamed the muscles. For a while my nose was sideways from the surgery, but the inflammation finally went away, and it actually looks pretty decent.

      I also had strep for 5 months this year- May to Oct. They kept saying that it was the radiation-and the oncologists said no--In Aug. I finally found a doctor that ran a strep test. The antibiotic wasn't strong enough. Okay-I know it was cured by the 3rd week of Oct. Every few weeks, my throat felt better, and I could swallow easier. This month is the best that I've had since May. Your back muscles are the same way- Think of yourself as a baseball player in the 1970s-80s, and you've been playing with a strained muscle all season. It took all off season to get better. So you'll get better. Give yourself time.

      Clyde is right, you need to get your abdominal lymph glands cored to make sure the cancer didn't spread. By the way, my brother became a USMC officer-fully functional.

      What part of Japan are you in? I've talked to several Americans in Japan and South Korea that had cancer. It's not easy. In South Korea, an American must pay for the full treatment in advance. One was a foster kid that worked her way through college and became a DOD school teacher on an Army base in ROK. She was told that the Army would provide health care. They diagnosed her cancer, but couldn't do more than that. Being a foster kid, she didn't have any family or anybody to help her. She stopped writing. She was younger than you-27 I think.

      I don't mean to stop on such a sour note, but I do have an idea of some of your problems. remember-strained muscles heal- you can tell all of the hotties that you were a secret agent in WESTPAC-that Clyde's brother-in-law never had a recurrence of cancer back in the dark days.
      Oh yeah--there isn't any wrong way to use this site. Happy New Year! I think that things will be better for for you.

      over 6 years ago
    • dougbank's Avatar
      dougbank

      Ivo,

      Judging from your responses, your cancer is still early enough that I can say it is not bad. While it Is possible that your back pain is being caused by cancer, the fact that your HCG is not particularly high and the CT did not see anything implies to me that you are more likely to be stage I than anything else. If the HCG goes to normal after surgery, you will be stage I. If it goes higher, then it is stage IS, which basically means the cancer has spread, just not visibly - this is treated with 3 cycles of chemo. Either way, you would have good risk cancer and should not worry too much about death.

      For much more info from guys who have had this cancer, you can join my email list TC-NET. Instructions are at http://TCRC.acor.org/TC-net.html. Other resources like forums also exist. There is nothing wrong with this site (what next), but most of the answers you might get are from people who do not know testicular cancer.

      Doug
      Testicular Cancer Resource Center

      over 6 years ago
    • Crash's Avatar
      Crash

      1. Dude, this is the forum you've been looking for, as far as I'm aware.
      2. It means what ever you make it mean
      3. Start exercising or resume exercising. Back pain could be because of scar tissue on your abdomen.

      I lost my left nut when I was 21. I had metz into my thorax. I had the husk of a tumor killed by chemo turn into a teratoma attached to my esophagus and aorta. I didn't handle it well, so I can tell you what NOT to do.
      I had the same problem getting an accurate diagnosis as you. It just wasn't on the doctor's radar.
      Did you end up with retrograde XXX? If so freeze your sperm if you want kids or to have more kids.
      Celebrate the New Year!! Thank God you're alive!

      over 6 years ago
    • dougbank's Avatar
      dougbank

      Sorry about the link I left. I forgot to check the autocorrect. The correct link is http://tcrc.acor.org/tc-net.html

      Doug

      over 6 years ago
    • debshephard's Avatar
      debshephard

      Hi Ivo, welcome and glad you found us. This is a great community who is always willing to share thoughts and experiences, as well as lend you support through your journey. Hopefully the testicular biopsy will give a clear indication of what you are facing. The CT scan is still considered the best way of staging testicular cancer. It should indicate if there is metastasis or not (helps to stage it). It is good that yours found no problems.

      over 6 years ago
    • ivo's Avatar
      ivo

      Dear all (Mike, Meyati,Clyde, Dougbank,Crash, Debshepard),

      I am really greatful for all the responses. Reading them, and realizing what other people are going through, it feels that I am actually pretty okay and lucky. I felt a bit of a relief reading your messages. Thank you.

      As to some of the questions, and to explain a bit more about the situation I am in:
      The surgery was done in a hospital (I called it a clinic because it's a small hospital compared to larger institutions in this town). The doctors who did the surgery are experienced urologists. Once we get the results from the biopsy they will tell me where to go further.

      You need to know: I am in Tokyo now, doing research here. While I am fairly fuent in Japanese, communication becomes sometimes difficult, especially when it comes to medical terms. So far I have done it all in Japanese but thinking about future treatment, it might be necesary to communicate more properly.

      The next step for me is to get the results and decide further treatment.
      Ideally I'd like to take it here in Tokyo - my work and my fellowship is dependent on me staying in Japan. There's however a problem with the insurance. I will be convered only for anoterh 1,5 months. Hence I wonder: how long does the treatment usually last assuming I will have Stage IS of testicular cancer?
      Also, are there people who are able to do work while receiving such a treatment? (chemo, or radiation).

      What else do I need to know or do at this stage? Are there any other symptoms or issues I should be aware of after this surgery?

      I am physically, apart from my lower back pain, feeling okay. The back pain is an issue that goes back before the surgery. It was in fact the back pain problem that made me go unexpectedly to the hospital two weeks ago. A new doctor examined me and realized that I had a problem with my right testicle.

      Happy new year to all of you!

      over 6 years ago
    • meyati's Avatar
      meyati

      Hi, Tokyo is a cool place to be. I go to a MD Anderson clinic. What counts is the skill. I can imagine the size of some hospitals in Tokyo. The back ache was caused by one teste being heavier than the other one. You can imagine the back pain my brother had with both being greatly enlarged. Poor guy-missing school- everyone wanting to know why he wanted to sit and not have PE. I guess it toughened him up enough to be a Marine.

      What are you researching? I'm nosey as all get out. I'm sure that you figured that one out already. Are you doing PH.D work? That's what my wild imagination says.

      I had a miserable night. My coonhounds weigh almost a 100 each. It was cold, and they kept scooting, where the blankets were under them, and pushing me off the bed. I had my flu and pneumonia shots in my left arm yesterday-and the fever hit me where I was dying for water and couldn't move my arm. Anyway, I finally got my feet free from the Bluetick, and got where I could move my arm. I got up, got a bottle of water, and my family came home from their parties and they got a blanket off of a shelf. I shoved the hounds back, and went to sleep. The Bluetick moved back on my feet- warmed my feet up. Since I've had the cancer, they've been very protective of me. I don't know how you are about shots, but you'll have to keep them up now.

      Oh, if a dog nips you and breaks the skin. You need to get Augmentin-a non-penicillin antibiotic or you develop Pasteurella multocida. It put me in the hospital-- they can't use stitches either. Other than getting shots-and the special care for a dog bite-that's pretty much for that

      As to working, many people work during cancer treatments. It just depends on how you feel, and your age-you're young-you seem to be at stage 1 or 2. My father began vomiting in the early 50s. They had to cut a person open to see what was going on. He had advanced stage 2 stomach cancer. They removed the blocked intestines, and told us that he'd die before 6 month, but 6 weeks or less was their prognosis. He died 3 years later. We went hunting, fishing, rode horses doing ranch work to help friends with round-up, was a building inspector where he was in and out of trenches, walking on girders. When I taught @ HS, I met far too many teachers that worked while they were getting chemo for stomach cancer

      over 6 years ago
    • Clyde's Avatar
      Clyde

      Ivo, this may not be a testes cancer specialist site, but I've learned more about cancer from here than from the melanoma sites where it is usually just a rehash of the same old stuff. Keep an eye on both, it really doesn't matter where you get your info, as long as you get it.

      You should be able to work through the chemo, my sister's husband had no problems other than some minor fatigue (teacher, university level--no going out at night, sleeping more and just feeling poorly but fully functional, more like a flu that just wouldn't go away), its important to pace yourself and not do more than you feel up too, but also important not to become a slug. Exercise is the best medicine along with a good diet.

      I want to think you are researching 13th century Kabuki traditions in hopes of finding a way to communicate with sharks. Sounds like something you get a fellowship for.

      over 6 years ago
    • debshephard's Avatar
      debshephard

      Hello Ivo, In answer to your question about work and chemo it may be difficult to work during the "intense phase"of the chemo, but what your chemo plan will be depends on your diagnosis. In my husband's case, he had a diagnosis of a "non-seminoma" which is more advanced than a "pure seminoma". He had to undergo the standard 4 full weeks of intense chemo (one week on, then two weeks off) from last March through the end of May. During these weeks "off" he still had to visit the cancer center twice a week (Mondays for his Nulasta injection and Tuesdays for his weekly Bleomycin). People offered to drive him but he stubbornly drove himself to most of his treatments. It was rough on him (he had to drop out of all his activities due to the nausea, "chemo brain", lethargy, shortness of breath, etc.) and we had only one trip to the emergency room (for a bad allergic reaction). As far as working, he had to limit any type of manual labor outside the home (handyman-type, snow shoveling, mowing the lawn) and was housebound for those 3 months- but was still able to still do some computer work from home. During this time he was very dependent on his caregiver (myself) to make sure he took care of himself; I had to do all the household chores and shopping as most days he could hardly get off the couch. Everyone is different as far as what they can handle during chemo. As rough as it was, we had it easy compared to others who sometimes develop more complications from their chemo. It is a tough road and it helps to have someone to help share the burden. Hopefully you have someone there you can depend on to help you through this. Fortunately by July we were able to travel, he had stamina again, the hair was on it's way of growing back, and now 7 mos later he is able to resume his normal activities. Hope this helps.

      over 6 years ago
    • dougbank's Avatar
      dougbank

      Stage IS requires 9 weeks of chemo. Stage I, which is more likely, can be treated with surveillance or maybe one cycle of chemo. Both treatments require months and years of followup. You need to get more insurance. Now.

      The Japanese do not see testicular cancer very often, so get second opinions on treatment. As for the back pain, it is definitely not caused by a heavy testicle. An extra ounce is not going to do that.

      Doug
      TCRC

      over 6 years ago
    • meyati's Avatar
      meyati

      I think that the bottom line has several factors, health, type and stage of cancer, type of chemo, personal get up and go. I've always had nausea problems-like barfing for 9 months of pregnancy for 3 kids. Radiation can cause nausea. My doctor and I were prepared for the worst. No nausea, I ate like a horse and gained weight. If I take a Tylenol or have another med with Tylenol in it- I'm barfing my head off. Some doctors think it's cute to do that-then they want to say, "See, Tylenol doesn't make you sick-It's all in your head." Barfing on the ER staff makes a point. Doesn't work that way. It's nice that you can talk about things like this on this site, instead of keeping it bottled up and not having any idea what's going on. If you're like me, you want to know the worse case scenario, then if that doesn't happen, you know that you have it made.

      Now to get my second sock on and watch Nebraska beat up Georgia. I know that New Years Day was yesterday-but Happy New Year!!

      over 6 years ago
    • Crash's Avatar
      Crash

      Yo Ivo,

      Sorry, I had to do that! From what I can gather you have not had a para aortic retro peritoneal lymph node resection. If I'm correct and you need one, you should either stay in the hospital for a week or if you go home immediately after surgery, you'll need someone to help you. It's a surgery that will take about a month before you start to "bounce" back.
      The nurses are real comedians. You'll have your belly opened just below the sternum, all the way down to just before they hit your rod, then a nurse will walk in, give you a pillow and tell you to cough. LOL! You might have some drainage hoses plugged in here or there. You'll be looking good! compared to Frankenstein. You'll be unable to work for about a month. You'll be weak as a new born kitten. Do everything the Physical Terrorist tells you to do. They mean well. You'll have a really COOL

      over 6 years ago
    • Crash's Avatar
      Crash

      scar. I love my scars. I think tattoos are for people who don't have scars. Hope this helps.
      Crash

      over 6 years ago
    • bp0023's Avatar
      bp0023

      Hey man keep your head up. I have been there and I am currently am there. I have had testicular cancer twice and I am now three days into chemotherapy. I am 32 and married. I have had both testicle removed due to two rare separate diagnosis's of classic seminomas. I went from the 2% club to the 1% club.

      1. There are a few forums you can go to. I am pretty new here but just searching testicular cancer forums should bring them up. Livestrong.com can also direct you in the right direction. I honestly feel this forum is pretty good for help.

      2. It all depends on the type. Seminomas is the type you want to get if you are going to get testicular cancer. Non- Seminomas is a whole different way of staging and is harder to get rid of.
      My first time around I had surgery and radiation to the lymph nodes in the back of the stomach. The second time around I had surgery again and now because of already having radiation in that area, chemo was the only plan. I am currently doing 5 days straight of EP with two weeks off and then the cycle is repeated four more times.

      3. Your back pain may of been from strain on muscles and tendons in your back being pulled the tumor in your testicle. I experienced this for a few months after the testicle was removed. Good news on no metastasis. Early detection is the best. The second time around was found early because my wife an I were going through fertility. My unborn child saved my life.

      If you have anymore questions feel free to message me or email me. Take care of yourself. God bless.

      over 6 years ago
    • ivo's Avatar
      ivo

      Dear all, again thank you for your responses.
      I just got a phone call from my doctor and will meet him tomorrow to hear the verdict based on the biopsy results. I'll let you know how things are then.

      over 6 years ago
    • ivo's Avatar
      ivo

      Dear all, this is a late up-date but I once again hope for your input.

      I've got results from histology and I am happy to say that mostly, they were positive:

      Seminoma with syncytiotrophoblastic cells, not too big of a tumor (smaller than 5cm), pT2. No invastion into lymph. nodes (and tumor didn't spread into tunica albuginea or epididymis or beyond.
      But they found some invastion into surrounding blood vessels - something which the doctor who treated me (urologist) wasn't happy about. His conclusion, I need further rounds of chemo or radiation as prevention. He couldn't tell me whether 1 or 2 rounds or what kind of treatment this will be and how long it will take.

      Accroding to your experience, what is next in store for me? Chemo or radiation? How many rounds? How will I feel taking those?

      I am returing home to from Japan and have exactly 60 days to take the treatment. If I am not back in Japan by that time, my research grant will be cancelled. Is this doable?

      Btw. I should also say that my high levels of HCG got back to normal values after the surgery (very good news, right). But strangely enough, I am still experiencing problems with the remaining testis..it seems that the inflammation (the reason I went to the doctor in the first place several months ago) is still continuing..and has continued for over a year now. I was taking anti-biotics (Crabit 250mg) the first time, in August, it worked and the pain from my scrotum disappeared. Now even after 10 days of anti-biotics, it's not getting better. Is it possible to get chemo and other treatment (anti-biotics) at the same time?

      I am much obliged to all of you who have already answered my questions.
      Hope all is well for you!
      ivo

      over 6 years ago
    • Crash's Avatar
      Crash

      Thanks for the update. First off, that's a heck of a weird pathology report. At least it explains how come your blood vessels are being attacked. My money is on Chemotherapy instead of Radiation. My gut tells me the chemo is going to get rid of your cancer as well as the uncomfortable feeling in your left nut. I feel that the sensation you're getting in the left nut may be because of the syncytiotrophoblastic cells. What the heck are they doing there anyway??? Are you yanking my chain? I know it gets weird inside a tumor. My Teratoma had skin and hair and fingernail tissue. OK. if your on the level, then my guess is that the blood cell invasion is going on in the left nut or scrotum, and that it will all be killed when you do your chemo.
      Radiation burns tissue. I know they've gotten better at aiming, but I have friends now who are suffering from radiation they had 20 years ago. I say do the chemo. I'm not a Doctor, but I play one in my mind!

      over 6 years ago
    • Crash's Avatar
      Crash

      I have received Chemo and antibiotics. I also have a history of Epididymitis where the XXX (e-jack-u-late) in case the word checker censors me, backs up and becomes infected by the urine. This, for years, caused me to think that the other nut was about to go bad. But they'd give me antibiotics and it would clear it up.
      Do you now have retrograde XXX? (e-jack-u-lay-shun). If so that's a bummer. The good news for me is that it has been years since I've had another case of Epididymitis.
      Good Luck!

      over 6 years ago
    • dougbank's Avatar
      dougbank

      You ask what is next for you. Well, based on all the data you have provided, that decision is up to you. You could do surveillance or chemotherapy or radiation. It is YOUR choice, and I am guessing that your insurance and research status are going to influence your choice. While I am generally in favor of surveillance, you might prefer to do 1 or 2 cycles of carboplatin chemotherapy. I cannot tell you whether 1 or 2 is better - I don't think they really have settled on a standard. But the chemotherapy is generally VERY easy. A single infusion with minimal (but real) side effects. You could easily do this and be back in Japan in less than 60 days.

      As for the pain, you have to assume it is completely unrelated, but you might want to see a urologist and get another ultrasound. If there really is some concern about infection, I think ciprofloxacin is the antibiotic of choice for this area.

      BTW, syncytiotrophoblastic cells are not uncommon in seminoma. They make the bHCG. They are irrelevant with regard to severity or treatment.

      Doug Bank
      dougbank at alum.mit.edu
      http://tcrc.acor.org

      over 6 years ago
    • meyati's Avatar
      meyati

      Hi Ivo,
      It's doable on the radiation side. I hope that you already contacted a cancer clinic that will reduce the red tape. Most of the gents I met had prostrate cancer. There were several people that had chemo and radiation at the same time. Usually radiation is a 6 week course-5 days a week-30 treatments. I suggest you search and find out where you can get cancer care- and ask them how soon you can get in and start treatment. I'd go straight there from the airport with my back pack. You need to be setting up appointments now, get assigned an oncologist now. The tumor board needs to convene after you see your new doctor. That doctor makes the appointments for you with chemo- radiation. They assess you.

      I don't know about chemo-but I think that everyone gets a PET or CAT scan. Problem is that you need to have a BUN and Creatinine tests run before you have the scan. It's to make sure that your kidneys can handle the stuff they inject for a scan with contrast.

      It took me 2 weeks to get into my clinic, then another 8 days to meet my radiologist. I had my scans and was in the tube . The radiologist would have seen me sooner, but the head doctor didn't tell them that I was in a rush. He wanted to do surgery and prosthetics only. At follow up, I was already getting radiation.

      Start Emailing clinics and tell them your time limit and why. I had the clock ticking because nose cancers can end up in the lungs-cells go in with sinus drip. Some lung cancers are treatable-mine isn't. The only consolation was that it would have been very quick, it's over with in less than 9 months. While I had different reasons for the ticking clock, it was nerve wracking.

      You never did tell us what you are studying. The only thing I'm familiar with is Miyazawa-the monk that a National Park is named for, astronomy observatory, musical school, and a college and the strain of rice he developed-not bad for a monk-poet. Did you know that he played at Milan, Italy? Then I'm a fan of Chiyo-Ni, the female samurai poetess, the most beautiful woman in Japan. They have wood blocks and other art forms of her by artists of her time. The most famous one is her by a well that's covered with blue morning glories.

      over 6 years ago
    • ivo's Avatar
      ivo

      Dear all,
      Today my physician and I agreed on 1 round of preventive chemo carboplatin (AUC 7), 21 day cycle. The chance of relapse after it about 6% (with two rounds it goes down to 2-3%). He said he would do one round. I agreed.
      Still what would you do in case you had a choice?
      This is my thinking:

      I understand that 2-3% of chance for relapse (after 2 rounds) is better than 6% but one also needs to consider that you're pretty much poisining your body with bad stuff- hence the 2-3 % point difference might not outweight this. Also, there's a 70 - 85% chance that no relapse will occur in the first place+ in my case even smaller since I have a small tumor and no problems with rete testis.
      What would you do?
      As always, thank you for your answers.

      Ps. Meyati I have not managed to answer your questions yet, sorry. I am doing history..writing about post-war Japan and Germany.

      over 6 years ago
    • Crash's Avatar
      Crash

      Dear Ivo,

      I like the 2-3% odds better than the 6%. You can handle it and you won't live the rest of your life second guessing whether you should have. BTW, somewhat tongue in cheek, you might want to re-visit that "no history of drinking". That's just me. Some times I give bad info.
      Cheers

      over 6 years ago
    • dougbank's Avatar
      dougbank

      I would (and did) surveillance. Given your particular circumstances, the carboplatin is a reasonable choice. Just be sure you have insurance going forward and DO THE REQUIRED FOLLOW UP! Just because you have this chemo does not mean that you do not need to go back for follow up!

      Doug

      over 6 years ago
    • meyati's Avatar
      meyati

      Dear Ivo. they said that I had a 1% chance of not having dry mouth. I% chance of breathing through my nose-having your mouth open all of the time increases dry mouth. 2% chance that I would taste anything- then 0.05 that food would taste like food. Same with smell. Guess what, I breathe through my nose, I can smell and taste foods, and fried chicken smells like fried chicken-I can taste and smell flavors, sweet and sour, etc.

      Do both treatments-then you'll feel better upstairs.You have to stop and think that many cancer patients are children or old, where the chemo affects people worse. Also, you are healthy and more highly motivated than many. Many of the patients have had large amounts of the their bodies removed by surgery. You don't have that problem. Then there are different chemicals used for different cancers. Most people that I meet have 6 weeks to 3 months of chemo for the first round. I had a friend in her 50s that had a bad mouth cancer-stage 3. She lived over a 100 miles from the clinic. She rode in with her coed daughter- had her chemo- and walked almost a mile, up a hill, and waited in the student union lounge for her daughter's classes to end. At first, she waited at the hospital, but they made a big deal about her waiting, and it embarrassed Nancy. My daughter and I offered to drive her, as I could shop, etc. She refused that.

      The follow up for me. I see my head oncologist 2X/yr. My dermatologist ditto. My oncology radiologist the same-and I get a Scan once a year. The ENT as needed. You should do well. Just lots of lab work.

      Oh, God!---- comparison of war crimes?----economy?-Japan was a 3rd world country until Viet Nam. The DOD set up where the Japanese made electronics. They started making field radios, and like in Korea, the DOD bought apples-tons of apples. I never did like the taste of apples stored in saw dust Japanese style. The Japanese put their expertise to work and soon had their own patients-with good contracts with the DOD. It was cheaper for the DOD to set up a company, pay for patient rights, and then ship to 'Nam, than ship from Kansas or New England.

      Then the Yakusa and the black market-then the social factor of Koreans trying to stay in Japan, so they didn't have to go to North Korea, or a place that didn't have any jobs. American Issei and Nissei families that decided to leave America after being released from camps-being hated by the Japanese population, even famiies that had war heroes in the American Army. They had to pretend to be Koreans to survive. They were given preference for employment at American AF bases, when the Korean War started. They and their families were given tickets back to America and had their citizenship reinstated if they joined the military-intelligence-behind the lines-translators for the men behind the lines, etc. I had one friend that pretended to be a Chinese officer that was inspecting North Koreans.

      Politics---Mind blowing and I don't understand any of it-it became mind blowing in the 20s and 30s. Japan, the Ginza- a constant riot with Marines fighting the AF police, communists trying to fight everybody. You have to be narrowly focused on the economy-or how the Cold War influenced our treatment of war criminals.

      over 6 years ago

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