One BEP Cycle - What to Expect?

FormerMember
FormerMember
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Hi all,

I'm newly diagnosed with Stage 1 testicular cancer, non-seminoma. I found this forum while Googling, this seems like a wonderful support group, so I've decided to join to both be of help to others and to receive help.

I'm 29 years old and have no children yet. I've undergone orchiectomy surgery, HCG normal pre and post, AFP pre surgery 12, and post surgery down to 3. No known lymphatic involvement. Tumor was confined to the testis, but was 55% embryonal carcinoma, which is labeled as a "risk factor". I've seen two oncologists recently. My current options are 1) surveillance or 2) one cycle of adjuvant BEP chemotherapy (3 week duration). Doctor left it up to me, he said if he was in my shoes he would be tempted to do the one cycle of BEP himself.

I was told there is a 20-25% chance of relapse with surveillance, compared to a 1-5% chance of relapse with one cycle of BEP. I'd like to undergo the cycle of BEP to improve my life in the long term.

I'd like to know what to expect by choosing to undergo this cycle: anyone have long term affects associated with it? Did it seem like the best choice over surveillance? I'm particularly concerned with fertility, I'm about to begin the process of sperm banking. Any recommendations? Is it realistic to still have kids naturally after this? How much more peace of mind does 1 cycle bring over surveillance? How much time off work? When do you get back to feeling normal again? Is the adjuvant BEP worth the risk?

Would love to hear from you!

  • Hello,

    My husband got TC after one year of marriage, he also had to do 2 cycles of BEP as that was what was recommended. We decided together that if it would lower his chances of getting it again (we were told by 40%) then it is worth it. He has not suffered any long term side effects (besides what I tell you below) , however everyone is different. 

    We do not have children, he was 34 when diagnosed and I was 30. Diagnosed right when we decided to try to start for children naturally. So I can share some details regarding fertility and bep since there is not my info on the web. First off, I would like to say I'm surprised the doctor did not recommend banking sperm before your surgery. We were told it would be a good idea for us to do so. We banked sperm before my husband's first orchiectomy and my husband had a partial orchiectomy a few months later which we also banked before that surgery and had some testicular sperm tissue removed during the second surgery. My husband would begin his 2 cycles of BEP about 1 month later. March 2020 will be 1 year after completing his chemo and we are going to have another sperm analysis done. However we had him checked at 6 and 8 months and his count was zero. The doctors don't know if he will ever able to produce again. If you Google it, you might read about it being able to take 2-5 years to produce again. But what we've been told he might not ever be able to produce.

    We are going to be trying in the next couple months IVF with the testicular tissue since we tried IVF last spring with the first sperm that was banked and our embryos failed to develop. That doctor said she thought the sperm may have already been compromised by the TC.

    So if I were you, bank some sperm before chemo if you want children down the road, it at least gives you a shot. If you don't, you might have to use a sperm donor or do adoption and those decisions are much more difficult and expensive.

    Best of luck and stay positive

    Let me know if you have any questions. 

    Meredith 

  • FormerMember
    FormerMember

    Hi. I had a stage 1 seminoma and right testicle removed last January. I was given the same choice and chose the single cycle of chemotherapy. The odds of relapse seemed too high without and frankly there only appears to be one reliable course of treatment if it does return and I would prefer to avoid it!

    the BEP went well, it is a painless procedure but puts our rather harmless cancer into perspective when you sit in a room with other cancer patients on a 10 or 20 cycle treatment.

    i only felt mild side effects, like a mild flu that kicked in a couple of days after the treatment and lasted maybe 5 days. Not bad enough to have a week in bed but bad enough to warrant kipping on the settee watching movies. I haven’t talked to anyone who had any worse side effects, they test your kidney before the treatment to see if they are strong enough to flush out the chemo and if they have any doubts they won’t administer the treatment.

    as for fertility, I didn’t make any enquires; my 2 kids are enough and my wife can’t have more. I would ask your GP about risks and ways to mitigate.

    good luck pal. You beat cancer already!

  • FormerMember
    FormerMember in reply to FormerMember

    Hi, just a quickie, couple of questions regarding your post, you mention you had stage 1 Seminoma and you did BEP, was the BEP cycle one hit, did the oncologist give you options of Carboplatin or BEP and if so why BEP? I thought reading a lot of stuff on the net BEP was alot more hardcore than Carbo.. 

    About me:  I was diagnosed with Stage 1 Seminoma no invasion, after the second opinion (MDT meeting) it was upgraded to Stage 2 invasive, I then had a robotic RPLND to remove retroperitoneal lymph nodes on the left side (currently recovering from) and in a couple of weeks I'm doing one hit of Carboplatin...

    Cheers, 

    Graeme

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Graeme,

    I can't speak for BallinInPA as to what the oncologist said to him, but Carboplatin as an adjuvant treatment can ONLY be used for a seminoma.

    As BallinInPA says his tumour was "55% embryonal carcinoma" (which is a rarer type of germ cell tumour), the tumour therefore is not a pure seminoma, therefore BEP has to be used instead of Carboplatin.

    cheers

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Kevin, 

    Thanks for the response, I was confusing myself, thanks for putting me straight.

    Saw the oncologist few days ago, my treatment is going from bad to worse.  Apparently, the results from the removal of some of my retroperitoneal lymph nodes came back with one of the nodes displaying invasion past a certain boundary, which now means I need 15 sessions over three weeks Mon-Fri of radiotherapy and that's after the 1 shot of chemo.  Not to mention I was slightly pissed when I was told, is an understatement, think I was more angry than anything.  Anyway I've calmed down and accepted the fact that I need this...  I'm now more concerned about the long term side effects of radiotherapy..!

    Anyway, cheers for listening. 

    Graeme

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Graeme,

    I'm sorry to hear this.

    I don't know much about radiation therapy but when I was initially reading about TC, I found this site to be very informative, it covers all the various types of tumour, explains the whole process of staging, and describes each treatment option (surveillance, chemotherapy, radiation)- http://thetcrc.org

    Hang in there and try to stay positive, you can get through this.

    best, Kevin