Why so many young women with GCTs (of the sacrum)? Any thoughts? Your ideas are welcome.

[ProfessorCrowley]

Hello everyone,

I am new -- I just registered and have written about my wife's story in another post. She has a very large, quite destructive GCT of the sacrum. It has caused extensive nerve and bone damage. She has terrible neuropathy. She has excellent doctors here at home and at Hopkins so this helps us feel better about our situation. We've been struggling with accepting how our lives have changed.

We wonder about the fact that so many young women (my wife is in her thirties), at least it seems this way to us, have been diagnosed with GCTs of the sacrum. My wife knows of only one man with the same tumor but a number of women (and considering how rare these tumors are, the percentages seem striking, even on our website) with sacral GCTs as well as GCTs in other locations. I know that more women than men tend to be diagnosed with these tumors in the first place, but I am curious as to what you think of this? Any theories? From what I have read so far, the tumors are not estrogen sensitive/responsive, unlike ovarian, uterine or breast cancers. GCTs do not collect estrogen either, so this does not seem to be a connection, but perhaps there are other triggers related somehow to women's health? I do not wish to leave the gentlemen out of the discussion -- I would like to hear what everyone thinks and any thoughts about possible causes of these tumors would be welcome. From what I have read, there are no known environmental or genetic triggers.

Thanks to everyone, and have a good night.

[Kim Savoie Armstrong]

There has been some discussion that GCT is hormone induced. For instance, I have found several notations that pregnancy may cause the tumors to grow faster. I have read that women are more prone than men, typically in their 20's, 30's and 40's with the largest group being the THIRD decade. I find this curious because so many women are waiting to have children until their very late 20'S and early 30's. So, did the hormones of pregnancy enable the tumors to grow in the first place? I had my two children when I was 19 and 22 so I do not fit in that group, but I also have GCT of the femur, not the sacrum. The fact that the sacrum is very close in the body physically to a woman's reproductive system also causes me to wonder. Do less men have sacral GCT's because they don't have ovaries and such sitting nearby? These are just some of my thoughts over the last few months.

[ilana]

Hi prof. First and foremost, I hope that your wife is working with a pain management team in order to keep her as comfortable as possible. For you, I commend your courage and commitment in joining our group. You are a victim of these evil tumors as well. Please, keep eachother strong.
I read about your wife's condition and have a similar story to share. Diagnosed about 7 months ago, at age 21, with a gct of the sacrum, I learned the definition of pain. Prior to falling ill, I was an athletic, adventerous, physical young person-- I loved to hike the nations Capitol, loved to swim, play frisbee and football, and lived on the slopes from the first snowfall until the last lift.However, for the moment, I have had to put almost all physical activities (and dreams of buying a harley) on hold. The pain, even when managed properly, is excruciating. I work from home, from bed, and can only occasionaly muster up enough energy to venture away from home for adventures that do not include doctors appointments. I'm not complaining, rather offering you and your wife a sympathetic (and empathetic) ear. Please, if either of you want to know what's "normal," or just want to talk to someone who "gets it," please don't hesitate to ask. Everyone in the group seems wonderful and open.
Responding more directly to your question, I believe there is a connection between estrogen levels and the gcts. Upon diagnosis my dr immediately pulled me off of my birth control pills and forbade me from taking any form of supplimental estrogen. As Kim mentioned, there are risks associated with child bearing by women with gcts in the sacrum due to the rise of estrogen levels associated with pregnancy. My doctor said that there is not yet an official,scientific reason as to why women tend to get gcts in the sacrum,but he does believe estrogen plays a role. His advice was clear and loud: do what you can to keep your estrogen levels low and stable.
Best to you both.

[Theresa]

All I know is that my Dr has told me no pregnancy for 2 years and also he does not want me on birth control. I really don' think they truly know but they feel it has something to do with hormones.

[Kristen]

Hi, my name is Kristen and my Son who just turned 20 on Monday has a GCT of the sacrum. He was diagnosed 2/08 right before his 19th birthday. We live in VA. He had surgery at Duke then several months later had a reoccurence so we went to MD Anderson in Texas. We are leaving next week for Washington, DC to check out a new medication..denosumab. You should check into this as well. No insight into why more women than men but would guess more women are likely to talk about this than men, as you can imagine the issues it causes for them being in this location. We wish you and your wife the best and will keep you in our prayers..... Blake's Mom

[Pam]

I also have GCT of the distal femur, however I'm 57 and have had no hormones or hormone therapy since I was in my early 40's. I went through early menopause, from late 30's until 41/42. I have suspected mine may have something to do with bone trauma. My GCT was right where I fell a year prior, I dropped to my knees as I spilled a can of paint and landed exactly where the tumor grew. I also had a tumor in my jaw bone, the oral surgeon thought it might have been caused from a poorly done root canal many years prior... however no GCT was mentioned about the jaw tumor. So... this is all very interesting. I though I'd toss this concept out there, does anyone have any bone trauma that you can remember?

[ProfessorCrowley]

Hi everyone, thanks so much for your thoughtful replies. My wife has never had children nor was she pregnant when she was diagnosed (nor has she become pregnant since). We did not think the tumors were hormone related, unlike say uterine or breast cancers, where the hormone connection is very clear. She has not had any bone trauma either. So who knows -- we have not been able to think of any potential cause or trigger that seems satisfying. There also are relatively few relatives in her family who have had cancer. The only real difference in her life prior to the diagnosis was a very high level of stress, but stress does tend to be blamed for all sorts of maladies when the actual hard evidence is somewhat more difficult to pin down. And she has had periods of very high stress in her life (grad school for example, oral exams, etc.) when she was fine physically. We read every article on the tumors we could find when she was diagnosed. Has anyone come across a particularly helpful article or other information that has helped?

[Patricia]

About 15 years ago, I had alot of undiagnosed kidney problems. I endured many renal studies involving radiation. Since my tumor was in my spine at about waist level, very close to my kidneys, I have wondered if all the radiation to that area could have anything to do with my GCT.

[Ian MacGregor]

ProfessorCrowly:

As a late middle-aged male with GCT of the sacrum for the past 4years I was very supprised that so many young women have been struck by this debilitating tumour. One of the things I have struggled with most is the wish to identify the possible causes of GCT.
I have had several discussions with doctors and other health professionals about the very subject and have often pondered on it in the wee hours of the night. The only answer I have ever been able to accept as we wait for the truth to be known , is that each of us were born with a rouge cell that for some reason stayed dormant until it awoke
in a rage. Could it be stress as the catylst?

I think that we tend to blame stress for all our ills, but in the absense of other factors I think it must be seriously considered. I have no family history of cancer . I am the first member of the family on either side to be sticken by this. I was never a smoker, always in top physical condition and had a rewarding family life. I loved my work as a general contractor but I must admit that when you are involved with people's biggest personal financial descisions the pressures are enormous. I think we are leaving in a success driven society and rarely if ever truly disconnect. Nor do I believe that the current trends to self realization and inner discovery have helped us to unload our troubles. In fact I think they have only added even more tasks to our ever growing lists
It is also my belief that women are the larger victims in this and carry added burdens that most men, although empathatic, do not necessarily share. If I am entirely honest with myself I have the suspision that our bodies are reacting to our often unwitting mental overloads. At the same time I think that self blame is a very negative exercise and that when all is said and done we may be a long way from causality.

I wish you the best in your struggle against this life altering disease. For myself, proper pain management has truly given me the chance to enjoy life again even though my tumour nor my pain seem ever far away.
Ian MacGregor

[Kerri]

Hi. I am new to this group, and also just trying to figure things out. I had a GCT in my tibia, not sacrum, but I have also wondered what in the world caused this thing. My mom made the suggestion that stress could play a factor in tumor growth, and initially I dismissed the claim, but now I am seriously considering it. I also have had a very stressful few years. And the fact that my job in advertising is ultra stressful doesn't help the situation. I am still recovering from my surgery at home ( I had the removal surgery February 19) so I'm very new to all of this. Any information on what may have caused this would be helpful.

[Pam]

Hi, my family and I have been talking about this off and on. My husband's view, along with Ian's thoughts... there are several things that make some sense. Considering the age spread on our site of 3 to 62, different genders and ethnicity, we live in different places on the globe... it seems there is no common thread that makes sense or holds true for everyone. Ian's words make much sense to me about the rogue cell. I wonder if our bodies carry this odd rogue cell and something triggers it... a key unlocks it's aggression and destruction and that key is not the same for everyone. Whether it be hormonal, stress, bone trauma or ???. Multiple triggers, but the rogue cell is somehow activated, released and begins it's destruction. I too have been under more stress the past two years than ever before in my life, plus have had bone trauma in the exact spot my tumor grew. So... just another thought, what a crazy condition we have! Hope everyone is doing well! Happy Easter!

[Vanessa]

Dear Professor Crowly,

Unfortunately, I do not have an answer to your question. I have not a clue about why women get this more than men. However, I too had a giant cell tumor of the sacrum, at I began experiencing pain at the age of 25. I had a series of embolizations, radiation, and finally, my sacrum was removed and the area reconstructed. I was on a lot of pain medication, including strong steroids, narcotics, and a PIC line when I was at my worst. I am now almost off of the methadone, and I am still taking Lyrica and Amitriptyline for nerve pain.

Just wanted to let you know that I am more than willing to answer any questions you and your wife might have, and am eager to share my experiences if they will help you in any way. I hope you both find comfort and healing soon. Take good care.

[Lauren]

I have no answer to this question either. I did have a fall on my bum when the tumor decided to started to let me know it was around by causing me severe pain when I walked or ran, I didn't know it then but it was the GCT in my sacrum. I found out about a year later when I was 21 and woke up one day and was in such terrible pain that I couldn't lay down, sit, and really killed myself to walk.

My doctor has stated that the tumor had nothing to do with the fall and was probably growing for a very long time and the fall just was the point where the tumor started the real noticeable damage!!

I really haven't heard anything from my doctor about the tumor being related to hormones at all. I stopped my birth control when I entered the hospital for this not because I was asked to though.

For now I am tumor free after the surgery to remove my GCT, my sacrum, and my tailbone. On June 3rd, we're checking for the first time for a recurrence. Everything will be A.O.K. I am positive!!!

Sorry, nothing really to add to the question/answers but that's my story! :)