As part of our Chordoma Survivorship Initiative, we are posting a series of guest blogs about the common — but too-often under-discussed — side effects of sacral chordoma. Written by sacral chordoma patients, the three blogs in this series feature interviews with doctors experienced in treating challenges experienced by sacral chordoma patients, such as bladder, bowel, and sexual dysfunction.
For this third and final post in the series, we are focusing on sexual function in women and men.
If you or a loved one are experiencing similar issues, remember — you’re not alone. Responses to our Chordoma Survivorship Survey revealed that many of these challenges are common to sacral patients. If you need support or guidance for your specific experiences, we’re here to help.
Female sexual function: Susan Hall’s interview with Dr. Stephanie Kielb
All that we’ve just discussed on bladder and bowel function folds into sexual function. If you can’t control your bladder or bowels, you’re not feeling very sexy. So when we have those problems managed it can help here too. Additionally, for women, nerve damage can cause a lack of sensation and lack of lubrication. Things that can help a lot of women include:
- Over the counter lubricants and moisturizers
- Topical estrogen
- Insertable estrogen/testosterone combination
- Medication for hypoactive sexual disorder, or decreased sexual desire
Unfortunately, there are fewer resources for women than men, although that’s changing. Again, chordoma isn’t the same as spina bifida, but the Spina Bifida Association has good information about female sexual function.
Susan noted that this topic sometimes comes up in the Chordoma Foundation’s online community and in the chordoma survivors group on Facebook and women often note how helpful it is to have an understanding partner. Other advice has been to be as open with your partner as you can, be patient with yourself and your body, and explore new ways of being intimate. Dr. Kielb agrees: “There’s no reason women can’t be sexually active. The sensations may be different, the stimulation may be different, there may be lubrication issues but these can all be worked with. It’s certainly something to talk with your doctor about.”
Male sexual function: Steve Olson’s interview with Dr. Joshua Halpern
To address sexual function in men, sacral chordoma survivor and Chordoma Foundation Peer Guide Steve Olson spoke with Dr. Joshua Halpern, a urologist at Northwestern Medicine who specializes in this area. They talked about the ways that sexual function can be impacted by sacral chordoma and its treatments and what options are available to men and their partners.
"Our conversation left me optimistic that there are treatment options to address intimacy challenges and some of them may be effective for chordoma patients depending on their situation."
Steve Olson, sacral chordoma survivor
"I think one of the most rewarding things that we can do as physicians is to help men and women manage side effects and regain their quality of life after having the life-saving treatments they need."
Joshua Halpern, MD, Northwestern Medicine
Dr. Halpern, please introduce yourself and tell us a bit about why you chose this specialty.
I am a urologist at Northwestern and I specialize in men’s sexual health and male infertility. And a big part of why I decided to go into this subspecialty is exactly to help folks such as yourself who are experiencing quality of life issues related to sexual dysfunction, which really does affect a lot of men. And I think, frankly, sometimes these issues are underdiagnosed.
Treating cancer is obviously of paramount importance, but we also have to remember that there are consequences to cancer treatment. I think one of the most rewarding things that we can do as physicians is to help men and women manage side effects and regain their quality of life after having the life-saving treatments they need, whether it’s chordoma or something else. So that’s really why I gravitated to doing what I’m doing. This is really a very rewarding field and I’m happy to be doing it and I’m lucky to go to work every day.
Some of the side effects sacral chordoma patients experience are similar to those of people who’ve had a spinal cord injury. How much of your practice is made up of these types of injuries where you’re dealing with nerve damage or interruption?
Spinal cord injuries are a small volume of my practice personally, and I think of most sexual medicine practices, because even though there are a lot of men with nerve or spinal cord injuries, these tend to cause the minority of sexual dysfunction cases because sexual dysfunction is so prevalent. We know that about 40% of all men are going to have sexual dysfunction or erectile dysfunction at some point in their lives. A fraction of those are going to be specifically related to nerve or spinal cord injury, but we do see a fair number of those patients.
At what level in the sacral nerve roots is sexual function impaired?
That’s a great question. When it comes to sexual function there’s a lot of different pathways that are involved. When we talk about sexual function, we first need to talk about what that means practically speaking, so that means:
1) erections and erectile function
2) orgasm, the pleasurable sensation of reaching a climax, and
3) ejaculation, which is the expulsion of semen from the penis.
And those things are all different, even though most people don’t give this a lot of thought until there are problems. Most people think they all go together — and oftentimes they do, but not necessarily. There are a lot of different nerve groups involved in those various functions. For example, to get an erection, the parasympathetic nerves are very important. To achieve ejaculation, you need the sympathetic nerves. In order to actually expel the semen through the contraction of the muscles in the pelvis, you need some somatic nerves.
A lot of those nerves do run through the sacral nerve roots, but the actual manifestation of sexual dysfunction can be different for every patient, depending on exactly where the chordoma was located and what surgery and radiation they’ve had. The medical literature on this issue is quite sparse, specifically looking at chordoma patients and their sexual function outcomes.
This makes me wonder how often people are seeking treatment for this. For me and my wife, we haven’t attempted to evaluate or fix it, for two reasons. First, I assume that some kind of surgery would be needed to make things happen that aren’t happening naturally. Second, we are continuing to seek out metastatic chordoma treatments, so sexual dysfunction feels like a distant second for my wife and me. Intimacy for us is just that, being close. Others may be accepting the same even though there are actually options to overcome the dysfunction.
Yes, there really are options and this is a big part of what we do. And obviously when you’ve got other things going on — for instance, if you’re in ongoing treatment for chordoma or you’re still recovering from treatment, sexual function probably isn’t at the top of your list of concerns. But there are a lot of men who feel like they’ve run out of options when in fact they haven’t. And so there really are ways for us to potentially get men and couples back in action.
In general, what I usually tell my patients is that I see this as kind of a “choose your own adventure.” My job is to put potential options on the table, let you know what is out there, let you know what’s available. Some men will choose not to pursue any options, maybe because they’ve got these other things going on, or maybe because it sounds like the things we might need to do to improve your function are not what you’re looking for — but other men may feel differently. If we can just help people understand what those options are, I think we might be able to help a lot more folks. I’ve certainly found that in my patient population.
How do you approach options with your patients? Can you give us an overview of what’s available?
It’s best to think about erection and orgasm and ejaculation separately.
When you think about erections, the conventional treatments that are out there, that are tried and true, are really not that many. They are:
- Oral medications like Viagra, Cialis. Those types of medications are probably unlikely to work very well for a lot of chordoma patients, but they certainly can be tried.
- Non-medication therapies, which are a little bit cumbersome, but certainly could work. The hallmark of that is something called a vacuum erection device. This is basically a pump that goes on to the penis and draws blood into the penis. And you place a little constriction band at the base of the penis, which traps the blood in there to simulate an erection. The nice thing about this device is, it’s not a medication. If you have the dexterity to put the device on, or your partner does, you can use it. The downside is that it doesn’t really simulate a natural erection because men tend to be erect only from the base of the penis where that constriction band is and downward. And we know that the penis itself actually follows into your body underneath your pubic bone and stabilizes that erection. So that’s not quite a natural erection, but it’s kind of a nice solution that’s not a medication.
- Intraurethral medication, called alprostadil (Muse®), which is a medication that gets inserted up the urethra, which sounds uncomfortable and it can be for some people, but it works locally in the penile tissue by helping the blood flow to the penis. It can induce an erection within a few minutes, about 10 to 15, after administering that medication. It’s a nice option for some men. It can lower blood pressure, so we usually monitor our patients closely. The first time they use it, we’ll actually have them do it here in our office to make sure it’s not lowering their blood pressure too much. Another side effect of this approach is that about 30% percent of patients will have some burning or some pain with their erection. Some men aren’t okay with that, but it is one option to try.
- Injection therapy is the option that we probably have the most men doing in our practice, with and without nerve and spinal cord injuries, and it’s the thing that probably works best. There are some strong medications that we can teach men to inject directly into their own penis, with a very small needle, the size that a diabetic would use for insulin. So even though the sound of this is somewhat overwhelming, with our guidance it’s pretty easy to do, and it’s really not that uncomfortable. And once we get the dosing right, 10 to 15 minutes later we potentially would have you with a good rigid erection that would last an hour or two — long enough to hopefully have a satisfying sexual encounter — and then go down on its own.This is probably the most effective of the medication therapies. The downside of course is that a patient has to put a needle in their penis, which takes some getting used to. And the other downside is that if you administer too much of that medication, you can get into a little bit of dangerous territory where the erection doesn’t go down and you’ve got to go to the emergency room. So we give very specific instructions for how much medication to administer.
- Penile implant surgery is the last, but certainly not least, approach that is a really great option, but I usually reserve it for men who have not had success with these other options. Basically we can put a device on the inside of the penis that’s attached to a pump on the inside of the scrotum. It’s almost as if you have a third testicle down there and when you are ready to be sexually active, you pump yourself up. When you’re done, you deflate yourself. Satisfaction rates for this surgery are extraordinarily high for both men and their partners. The major downside is that it’s surgery, right? So it’s more invasive, it’s a surgical procedure, and the biggest risk of that surgery is infection because if that device gets infected —like any other device implanted into the body — it’s got to come out. And that can be a serious issue. The rates of infection are not high, though — around 5%, depending on the patient population that you look at. But that’s the biggest risk we worry about when we use an implant. This surgery is a common last resort, but a very good last resort and most of our men are extremely happy with it. And the medical literature suggests high success rates and satisfaction rates are quite high as well.
Something that has been looked at less so for erections and more so for orgasm and ejaculation has been penile vibratory stimulation. That’s basically putting a medical-grade vibratory device on the tip of the penis to stimulate the ejaculatory reflex. For a lot of men with chordoma that type of device probably isn’t going to work, depending on the neurological deficit. But it’s also a noninvasive, somewhat easy approach that can be worth a shot for a lot of men, depending on their particular circumstances. Again not painful, easy to do — it may not work for a lot of men, but certainly it’s another non-medication approach.
So that’s truly the gamut of options. There are some other things out there, like shockwave therapy, platelet rich plasma, stem cell therapy — but none of those are FDA approved yet. The ones we’ve discussed are tried and true and really can make a difference.
Now in the case of certain sacral resections, there’s a point where you’ve got no sensory feeling left in the genitals at all, which means even if you are able to achieve the erection, there’s no sensation at all.
That is a more difficult problem to tackle. As far as the sensation in the penis itself, that tends to be something that is really hard to recover. We know that in general, nerves can take up to two years to recover, sometimes longer after injuries. So for example, sacral chordoma patients may have some nerves that were spared, but are still somewhat damaged from surgery or radiation. You might see slow recovery over the course of about a year or two.
For example, for men who undergo surgery for prostate cancer, which comes very close to the nerves responsible for erections, we still see men who have pretty severe dysfunction right after surgery. But if you follow them for a year or two, they slowly recover. So there are likely some men who have undergone chordoma resections who, depending on the extent of that resection, could see some sensation gradually return. I’m not aware of any data yet on things like nerve grafts or that type of more invasive intervention to restore sensation.
So how would somebody go about this? Is there a preliminary screening and tests you do with patients, to be able to say, “You know what, we’ve got a good chance of doing something or we don’t.” I’m sure this is something where neither you nor the patient want to invest a lot of time and then find out none of this is going to work.
There are some diagnostic tests that can be performed depending on the person’s particular issue, but they tend not to change our management all that much. Most times it’s less a question of why is this happening and can we reverse this, and more a question of how do we treat you through this?
That’s probably going to be the case for chordoma patients in particular, because we know why this is happening. You don’t need to really do too much investigative work to understand the cause of the issues, so we really just need to try to figure out how we can help you.
The real key is finding somebody in your local area who specializes in this particular area of medicine and sexual health who you can chat with. Because everybody’s circumstances, as you mentioned, are going to be different. There are some men who will emerge from their chordoma treatment and have, maybe, some mild erectile dysfunction. There are other men who have severe erectile dysfunction, can’t achieve orgasm, and may have decreased penile sensation. But even in those cases, it’s not just a matter of whether we can help somebody, but also what their goals are.
For instance, there may be men who have low sensation but that bothers them less than the loss of their erection. And they may say, “Well, even if I can’t feel down there, I want to be able to get an erection that’s rigid enough for intercourse, because that’s important to me and my partner and whether I can have sensation down there is a little bit less important.” There will be other men who might say, “If I can’t feel anything down there, to heck with all of it, and I’m not interested in what you’re offering.”
So I think talking with somebody who specializes in this area who can 1) understand your overall constellation of symptoms and where your sexual function lies, and 2) takes the time to find out what’s important to you. And then with that understanding, along with information on your specific chordoma and your disease course and your treatment, you can figure out which of these options might work. It might be that penile vibratory stimulation is probably not likely to work for you but injections actually might be helpful, so would you be willing to give those a try? That’s the way I have conversations with my patients, regardless of their disease process — what is their goal? And what is reasonable, from their perspective, to attempt in order to achieve that goal?
Is there anything on the horizon that you think might be promising? You’ve been pretty expansive in discussing current options to address different situations. Is there something out there that would give even more hope?
It’ll be a little while, but those experimental treatments I mentioned are certainly forthcoming. Stem cell therapy is one that I think holds great promise. The other is shockwave therapy. The thing about those treatments, though, is that they tend to target the blood supply within the penis and less so the nerves, so even if they are effective, they might not be of great use to chordoma patients — but again, that depends on the person’s particular circumstances. The good news is that the treatments we currently have are really quite effective for a lot of men. And so I do think that chordoma patients who are seeking this care will have success to some degree with the treatments we’ve talked about today.
What resources can you recommend for sacral chordoma patients to learn more about these procedures and options?
The American Urological Association’s Foundation has a nice booklet on erectile dysfunction. Certainly not geared specifically towards neurological patients only, but it does have a fairly comprehensive but concise and easy to read description of some of the treatments that I just mentioned.
What is the best place for people to start when looking for a specialist in sexual dysfunction? Do all urologists provide this type of treatment?
SMSNA has a provider locator that people can use to find specialists. That would be a great place to start for patients in North America.
Urologists provide this treatment most of the time, but within urology it can really depend on the practice. At an academic medical center like Northwestern, we are very specialized and we have experts in very focused areas. The majority of my urology partners at Northwestern don’t focus on sexual medicine because myself and another one or two of my partners, this is all we do. And so patients at Northwestern will see us specifically.
Whereas if you see somebody in a private practice or a smaller center, it’s possible that they’ve got just one or two doctors and those doctors do everything. And they may be very capable of treating sexual dysfunction. A lot of the treatments we’re talking about are common. They’re not things that you really need to be highly specialized in this field to understand, or to be aware of. There’s nothing that I just mentioned that the average urologist would be unaware of.
In the era of COVID, we’re also doing a lot of telemedicine. We’ve got patients we’ve never seen in person before, and because of the nature of our field, we can do a lot of this work from afar. So I am always happy to get on a telemedicine visit with a patient. You don’t necessarily have to see somebody in person, at least not the first time around. You may eventually, but just to gather that information and take that first step, you don’t necessarily need to make an office visit.
Do urologists in this field ever consult with other doctors, for instance if a local doctor would like to consult with a specialist in a larger center or something like that?
Our field is small enough that when a doctor reaches out to us, we just get on the phone or send them a text and we chat with them. It’s usually not a formal consult, but we have folks reach out to us all the time. At large centers like Northwestern, we’re lucky to be in a place where we’ve got experts in these subspecialties. So when people reach out to us we usually just pick up the phone and say, how can we help?
I think there’s great room for optimism based on the things you’ve discussed… in particular, when you look at the possible effects of chordoma and its treatments, I think there’s a lot of opportunity to help improve quality of life for sacral patients. Any last words of wisdom for us?
You made a great point in the beginning, Steve, which is that sometimes we don’t know what to ask — we don’t know what we don’t know. I think a lot of men assume that there are no options. And that is just not the case. Getting this information out to the chordoma community will do a great deal of good.
This interview has been edited for length and clarity.
Contact a Chordoma Foundation Patient Navigator
Chordoma Foundation Patient Navigators provide personalized information and support to anyone affected by chordoma, anywhere in the world, at any stage of their journey. Your Patient Navigator will use their extensive knowledge of chordoma to help answer your questions, provide information about treatment guidelines, help you find qualified doctors, talk with you about side effects, and connect you with others in the chordoma community who have been through a similar journey.