Community Q&A

Common questions about testicular cancer, answered by real guys and doctors.

Quick note

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Treatment questions

What do I need to know about an orchiectomy (surgery)?

Dr. Mark S. LitwinUrologic Oncology MD, MPHProfessor and Chair - UCLA Department of Urology

Radical orchiectomy involves the surgical removal of one testicle and the spermatic cord that connects it to the body. The surgery is done as an outpatient or day-stay.After induction of general or spinal anesthesia, the urologist makes a small incision in the inguinal (groin) area at about the pubic hairline, then dissects through the layers to the inguinal canal. The testicle and spermatic cord are then moved up into the incision and out of the body. The spermatic cord is secured with a suture and divided, liberating the testicle. The tissue layers and skin are usually closed with dissolvable sutures.The testicle and spermatic cord undergo testing in the pathology lab to determine the type and extent of tumor. When the hair fills back in and healing is complete, the scar is often invisible. Patients are told to keep the area dry for a couple days and to place cold packs on the incision to prevent swelling. Most patients need only a few days of pain medication.Depending on the tumor type, tumor markers, results of the CT or MRI scans, and determination of whether the tumor has spread, patients typically then undergo treatment or management of the lymph nodes in the abdomen (and possibly the chest).

BrettHockey Coach, Accountant and Avid GolferTreatment type – Orchiectomy

What you need to know about surgery is that it is simple (surgeons these days are excellent) and you are out for the entire thing. I remember looking up at the light one minute and waking up in recovery 2 hours later. I was in and out of the hospital on the same day. The surgery for me wasn’t the issue, it was the waiting game for a week to determine whether I needed chemotherapy or not based on the results. It is best to focus on recovery, pain management, and enjoying life.

Ben S.Active guy, love the outdoors, riding my motorbike and watching any and all sportsDiagnosis Age – 23Treatment type – Orchiectomy, BEP chemo x 3, RPLND

Ask about sperm storage, fertility and what you need to do. Recovery for me was quick and incomparable to the later stage treatment.

Did you ask for a second opinion?

Adam S. Active husband, father of two and sports tragic Diagnosis Age – 34 Treatment type – Orchiectomy

Yes. It’s common for surgery to happen quite quickly following diagnosis. In that time, you’ll be busy taking in a lot of information in choosing your treatment path and it can be hard to process it all. In my experience, I got a second opinion to verify and give me comfort on what needed to be done.

Brendon M.Love racing, cycling, sailing, fishing Diagnosis Age – 29 Treatment type – Orchiectomy & Chemotherapy

At the time my doctor was very good at explaining the test results, so I never pursued a second opinion.My blood tests, scans and pain all pointed to one thing which was a very serious tumor that had to be removed as soon as possible.

Ben S. Active guy, love the outdoors, riding my motorbike and watching any and all sportsDiagnosis Age – 23 Treatment type – Orchiectomy, BEP chemo x 3, RPLND

Not initially, but I should have as not doing so delayed my diagnosis.In my experience GPs (or primary care docs) are not oncologists or urologists, nor do they know everything about medicine. If you’re worried, find a GP who will send you for an ultrasound and blood tests for tumor markers.

What were the side effects of chemotherapy and how do you deal with them?

Dr. Ben TranMedical Oncologist, MBBS, FRACP

Guys who receive EP or BEP chemotherapy for their testicular cancer can have quite varied experiences. In general, older patients might find chemotherapy a little harder.Each of the chemo regimens consist of three week-long cycles, which include one heavy week of daily chemo, followed by either no chemo for two weeks (EP) or one day of chemo on each of the next two weeks (BEP). The first week is often exhausting, as it can be up to six hours of chemo each day, Monday to Friday. Nausea and vomiting might occur during that first week, or into the second week –make sure you speak to the nurses and doctors, as there are lots of treatments that can be given to improve nausea and vomiting. Fatigue normally sets in during the second week – while the fatigue can be severe, most patients can still get out of the house. If you’re so tired that you can’t get out of bed, you need to call your nurse or doctor straight away. The third week generally is a recovery week, just before it all starts again.Most patients receive either three or four cycles of chemotherapy, depending on the type of chemotherapy used and the purpose for which it is being used.Hair loss won’t occur straight away, and can even be delayed until during the second cycle (i.e. into the fourth and fifth weeks). Most patients will get mild ringing of the ears (tinnitus) which will come and go from time to time. Some will develop tingling in their fingers and toes as the chemotherapy course goes on – this can persist after the chemo finishes as well.Most doctors worry about the risk of infection as the immune system weakens. Consequently, it is best to have a thermometer handy, and if your temperature is above 100F/38C, you need to head straight to an emergency department. Particularly if you cannot reach your doctors and nurses immediately.During the heavy week of chemo, some patients can get very bloated due to all the intravenous fluid that is given. Additionally, some patients can get heartburn, due to some of the medications given to prevent nausea.It’s hard to give sufficient detail in this forum, so please make sure you have a good chat to your doctors and nurses before, during and after chemotherapy, about what to expect and about what you might be experiencing.

Ben S.Active guy, love the outdoors, riding my motorbike and watching any and all sportsDiagnosis Age – 23Treatment type – Orchiectomy, BEP chemo x 3, RPLND

Lots of things, too many to name most of which fade with time, most overt things were loss of hair and just feeling extremely sick for the 12 weeks of treatment.

Sex and fertility questions

How long after testicular cancer treatment can you have sex?

Ben S.Active guy, love the outdoors, riding my motorbike and watching any and all sportsDiagnosis Age – 23Treatment type – Orchiectomy, BEP chemo x 3, RPLND

As soon as you’re up to it, but it’s wise to use a condom for a while after chemo (and during if you have the energy for it then) as your chemo can make your ejaculate toxic. Something to ask your doc about for sure.

Dr. Ben TranMedical Oncologist,MBBS, FRACP

During chemotherapy, you may feel quite tired and might not be up for it, but if you are, it is ok to have sex during treatment. However, make sure you use a condom, as chemotherapy can be present in bodily fluids for up to seven days after each chemotherapy session. This way, you can ensure you protect your partner from any unexpected chemotherapy exposure.There is not much science to back it up, but generally we think it is ok to have unprotected sex four weeks after completing chemo. However, most of us recommend that you avoid trying to conceive a baby for at least six months after chemotherapy. So it’s best to use some sort of contraception until then.

Dr. Mark LitwinUrologic Oncology MD, MPH Professor and Chair - UCLA Department of Urology

There’s no hard rule on this, but generally after an orchiectomy (surgery) it takes a week or so before you’re back in the mood and feeling up for it.

Will I be able to have kids if I’ve had testicular cancer?

Adam S.Active husband, father of two and sports tragicDiagnosis Age – 34Treatment type – Orchiectomy

There are hurdles and the ability to have kids will depend on your prognosis and also your relationship status at the time.You should ask lots of questions about fertility and plan ahead prior to choosing your treatment path.

BrettHockey Coach, Accountant and Avid GolferTreatment type – Orchiectomy

The answer is all dependent on the outcome of your sperm analysis. I took the precaution of sperm banking before my surgery as a safety precaution as the doctors told me my low sperm count could be a result of cancer, but they did not know if they were removing the testicle that was the good or bad one.With advancements of other methods, I am hopeful to have kids. I have had friends who have had testicular cancer who had children naturally even after having chemotherapy.

Ben R. Father of a young boy, hit the beach when I can, watch the stars at night and like to eat a little too muchDiagnosis Age – 32

I had some initial concerns about whether I could have kids after my orchiectomy; however, I spoke to my medical team and they reassured me that having one healthy testicle was more than enough to play my part in the reproductive process.

What’s involved in preserving fertility & when should I consider it?

Adam S.Active husband, father of two and sports tragic Diagnosis Age – 34 Treatment type – Orchiectomy

Once you have been diagnosed, you should be asked to consider banking some of your swimmers in case they are needed in future (I was advised to do this and did so prior to my orchiectomy).Depending on your personal circumstances, if you make a normal recovery and have one functioning testicle without any other health-related conditions, you should be able to produce the swimmers needed to conceive kids. If not, you can also consider alternate paths like IVF.

BrettHockey Coach, Accountant and Avid GolferTreatment type – Orchiectomy

I will say always take the precaution. Since it was an aggressive form of cancer, I made sure to go to the sperm bank 3 times a week before my surgery.

Ben S. Active guy, love the outdoors, riding my motorbike and watching any and all sportsDiagnosis Age – 23Treatment type – Orchiectomy, BEP chemo x 3, RPLND

With sperm storage, you ejaculate in a cup and they freeze it for your use when you’re ready.Definitely discuss this prior to orchiectomy as your remaining testicle may not be up to the job.

Recovery questions

How much time off work is generally required during and after treatment?

Ben R.Father of a young boy, hit the beach when I can, watch the stars at night and like to eat a little too muchDiagnosis Age – 32Treatment type – Orchiectomy

It will vary based on what treatment you have, but for me I had three weeks off work. In hindsight, I probably went back to work a little too soon and didn’t give myself enough time to process what I had gone through.

Ben S.Active guy, love the outdoors, riding my motorbike and watching any and all sports Diagnosis Age – 23Treatment type – Orchiectomy, BEP chemo x 3, RPLND

Hard to say, if you have chemo you might need several months off.I personally was off work entirely for six months and returned to part-time for the remaining six months of the year before returning to full-time work 12 months after my initial diagnosis.

Brendon M.Love racing, cycling, sailing, fishingDiagnosis Age – 29Treatment type – Orchiectomy, Chemotherapy

I had three months off work for the surgery recovery and chemotherapy. This allowed my body to heal and energy levels to return. If chemotherapy wasn’t required I would think I could have returned to work in four weeks or less depending on duties.

Dr. Mark S. LitwinUrologic Oncology MD, MPHProfessor and Chair - UCLA Department of Urology

Generally, patients will miss only a few days of work or school after an orchiectomy (surgery).

When is it safe to say, "I’m all clear?"

Ben R. Father of a young boy, hit the beach when I can, watch the stars at night and like to eat a little too muchDiagnosis Age – 32Treatment type – Orchiectomy

I got the “all clear” after five years, but I still perform self-examinations.

Adam S.Active husband, father of two and sports tragic Diagnosis Age – 34Treatment type – Orchiectomy

For me, it was about a year after I first heard the word “remission” from my oncologist.There is typically a multi-year surveillance programme to complete where you will have blood and scan tests on a periodic basis. There is a higher risk of recurrence in the first couple years and it could play in the back of your mind (it did for me).Now that I have been in remission for a couple of years, I have moved on. I am continuing to work in my chosen career, I am more focused on my health, my loved ones and have been blessed to have a second child.

General questions

What are the pros and cons of getting a prosthetic testicle?

BrettHockey Coach, Accountant and Avid GolferTreatment type – Orchiectomy

I weighed the pros and cons and decided not to get one. My doctor told me that over 50% of the people get it and 50% of those people actually get it removed because it doesn’t always feel natural.I’m married and my wife did not care “how it looked” and I am actually glad I didn’t get one because I don’t even notice I only have one testicle. I would think someone who is in their 20s and single may think people would have a stigma against it but honestly, it’s more important to be healthy than to care about how something looks that nobody can ever see.

Dr. Mark S. LitwinUrologic Oncology MD, MPHProfessor and Chair - UCLA Department of Urology

It’s pretty easy to have a prosthetic placed at the time of orchiectomy. It is made of soft silicone and shaped like a small egg. Usually, it’s included in the cost of the orchiectomy. If implanted later, insurance companies may consider it cosmetic and decline coverage.Most patients don’t really notice the prosthetic, except that it brings symmetry to the scrotum after a testicle has been removed. Some patients feel heaviness or discomfort around the prosthetic. In rare cases, the prosthetic can become infected or painful and must be removed. Patients can tell the difference between the prosthetic and the normal testicle, but it’s often surprising that intimate partners don’t notice. There’s not much downside to having a prosthetic placed. Serious negative long-term health consequences are rarely reported.

Ben R.Father of a young boy, hit the beach when I can, watch the stars at night and like to eat a little too muchDiagnosis Age – 32Treatment type – Orchiectomy

I have a prosthetic. I chose to get one for aesthetic reasons. I don’t really notice it anymore, but if I had my time again, I wouldn’t get one as having a ‘half sack’ is like wearing a badge of honour for beating cancer.

Ben S. Active guy, love the outdoors, riding my motorbike and watching any and all sportsDiagnosis Age – 23Treatment type – Orchiectomy, BEP chemo x 3, RPLND

Wouldn’t know! I am a uni-baller, I guess symmetry would be a pro?I personally don’t really care about the aesthetics of my ball (get used to saying ball and not balls) but my surgeon did remark on the fact that if you’re having chemo it’s great to not put anything into your body which is not completely necessary.

How did you tell people about your testicular cancer?

Ben R. Father of a young boy, hit the beach when I can, watch the stars at night and like to eat a little too muchDiagnosis Age – 32 Treatment type – Orchiectomy

I find it quite cathartic to tell people about my testicular cancer and the effect it had on me physically and mentally. I’ve learned that most people want to know more as they are generally interested and want to understand how to deal with cancer if it ever affects them or the people they know.

BrettHockey Coach, Accountant and Avid GolferTreatment type – Orchiectomy

Initially, once the shock wore off, I told a close group of friends over text. I was absolutely shocked at the response and how great my friends were at supporting me through it. My wife and family were also very supportive as nobody “does” something to get this. It just happens.It’s always best to handle the situation with “what do we do next?” and being open to talking about it. When I started telling people, I had friends come to me privately who would tell me they knew someone who had it and all of a sudden, I had a network of people to talk to.

Brendon M.Love racing, cycling, sailing, fishingDiagnosis Age – 29Treatment type – Orchiectomy, Chemotherapy

I went straight up. The thought of embarrassment did not really enter my mind though fear did. I can empathise with having thoughts of either emotion in telling others. I am fortunate to have a support network that gives me the confidence to share my experience.When I thought it through, I saw this is a serious health condition that is getting more mainstream awareness and decided to share my experience in the hope that it helps others.If you do not have a support network where you want to talk, Movember can help in listening and connect you with the information and people that you need to know.

Ben S.Active guy, love the outdoors, riding my motorbike and watching any and all sportsDiagnosis Age – 23Treatment type – Orchiectomy, BEP chemo x 3, RPLND

I only told close friends and family and waited until I had beaten it to share my story.Everyone operates differently, some thrive from sharing their story far and wide, personally, I chose to focus entirely on my treatment rather than add to my concerns thinking about how I was going to tell a bunch of people who didn’t strictly need to know.

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