Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

47 Posts | Page(s): 1 2 3 4 5  Next 

Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by missmom on Tue Jul 27, 2010 08:20 PM

Quote | Reply

Hello All,

 My world has crumbled to nothing in the last 3 months so I should probably apologize in advance for the length this post will probably turn out to be. I want to share my story although  I'm not sure why or what can come from this...maybe just to vent because I am so angry and terrified, maybe because it may be cathardic in some way, maybe because I am DESPERATE to find more information or even a SMALL glimmer of hope, or I am hoping to find just ONE person who has survived my same nightmare, but probably all of the above, so here it is. 

I was recently diagnosed with a Sertoli Leydig tumor of the ovary with poorly differentiated cells. My tumor was first discovered on April 16th on my right ovary and removed on May 2 of this year along with my tube. My doctor was extremely positive and reassuring that I had nothing to worry about, I even postponed surgery to go on vacation since the size wouldn't allow a laparotomy and I had to have a full incision. 2 days after I was released pathology reports came back as malignant. My doctor explained that my path reports were "extremely conflicting" and "unclear" and he was referring me to a GYN/ONC. I have been in the midst of an emotional, physical and spiritual nightmare since that very day.

After meeting with the Gyn/ONC we agreed on what we thought to be an agressive plan for treatment although he to was still researching the tumor type. 1 month later, on June 4 2010 I underwent a GRUELING 7 1/2 surgery, had a complete hysterectomy, lymphnode removal and 56 biopsies of various organs in order to stage the tumor and receive a final diagnosis. All biopsies came back clean.

The month and a half between the first surgery and diagnosis was the longest month of my entire life. I found the word "cancer" absolutely terrifying (and still do). Being a researcher at heart, and for a living, I had no information to go off of. At the time my absolute WORST NIGHTMARE was the possibility of undergoing chemotherapy and losing my hair. I cried almost every minute of every day, I didn't sleep, I was literally frozen in terror. My doctor was very vague and refused to even give me a glimpse of my future. 2 weeks after surgery my family and I went for the dreaded appt. to discuss the findings and that was the first time I had heard the term "Sertoli Leydig". The doctor gave a Stage 1A diagnosis. My family was thrilled with such an early stage and the fact that it had been removed and the doctor suggested 3 rounds of chemo to follow up. My world fell apart right there in his office. I was crippled at the thoughts of the "Conventional Poison" but given the fact that he gave me a 30% chance of recurrence, and my family is counting on my survival I felt/feel I have no choice. I came home and went to bed and thats where I stayed for quite some time. I wanted to feel "lucky" and "blessed" but deep down I just didn't. I felt like I had been knocked down and couldn't get up.

Over the next few weeks, with many pep talks from friends and family I began to change my perspective. I started to focus on making the neccessary lifestyle changes to reassure myself it wouldn't return and tried to mentally prepare for my first chemo treatment. I still cried ALOT but had just started to believe I could make it through this.

I went through my first chemo session on Friday, July 9th and was surprised at my fairly good response the first couple of days. Then, on Sunday, July 11th I noticed a large knot in my pelvic area just below my incision from the first surgery. It scared me to death and we rushed to the e.r. They took a couple x rays and said it was nothing and sent me home. The following Wednesday I called my chemo nurse and asked if this should be expected... she gave an emphatic NO but said "You can discuss this on the 29th with your Dr." By Friday I was completely panicked, it was still present and beginning to cause pain so I demanded to see the Dr. on call (my Dr. was out of town). Finally someone agreed - we had a problem. She performed a CT scan and on Tuesday of last week my Dr. confirmed the cancer has returned, (no need for a biopsy) and it's as large as the first mass on my ovary, 12 cm.  Oddly enough it is in my muscular tissue directly beneath my bikini cut incision. There are also 2 other spots in the exact places of biopsy in my colon. HOW COULD THIS BE HAPPENING TO ME?

It's back in a little over 1 month! I am so sad, angry and scared I don't even know up from down at this point. My Dr. is shocked at it's speed and does not seem very hopeful, and continues to squash any hopes of survival. This form of cancer is so rare it accounts for less than 1% of all ovarian cancer cases.(.5 to be exact) There is VERY little information on the internet about it. I would go to the ends of the earth to see a specialist but can't seem to find one. No one seems to know much about it's causes or how to get rid of it. My Dr. told me yesterday basically to never expect to be disease free. I could plan on possibly taking chemo for the rest of my life and only manage this evil disease rather than be free of it. (ANd that's only if the tumores aren't chemo resistant- best case scenario). I can opt to quit chemo at any time. I just can't bear the thoughts of not seeing my kids grow...My quality of life has plumeted to nothing and my hope is quickly fading.

I am looking into alternative treatment methods (thanks to the CC boards and members suggestions) and have an appointment at a leading cancer research facility (don't think I can mention names) next week. I just don't know how to fight something that has never been beaten. I have changed my diet, quit smoking and started every herb and supplement that even may make a difference. I don't expect that the new doctors will suggest any different treatment however they may have a better outlook in general. I also wonder if I should consider traveling deep into the jungles to find a cure myself or when should I accept my fate...so many questions.

I am continuing to pray and cry, wishing for that stage 1A diagnosis that I didn't truly appreciate for the short time I had it. Yesterday I noticed my hair falling out so I took scissors and chopped it off as I cried. I just don't understand what I have done to deserve this. I look at healthy moms all around me and I am angry - actually I am jealous and turning bitter. Why can't I have a future??? I am just not ready to die!!!!!!!!!

Okay, I can barely see the screen through my tears so I'll bring this to a close.

If ANYONE has any information on Sertoli Leydig Tumors, specialists, or research I  DESPERATELY need to here from you.

If not, and you managed to make it through this entire post/rant/therapy session and your still here then I just thank you...I guess this is where the support part comes in.

Lisa

"MissMOM"

 

RE: Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by Itsallgood on Wed Jul 28, 2010 01:15 PM

Quote | Reply

Lisa, I am so very sorry for all you are going through.  I truly know and understand all you have said.  I was 39 when I was dx. I am now coming up on my 43 rd birthday, that I never thought I would see.  I don't know your type of cancer I just know your feelings.

I have been on and off chemo going on 4 years.  I have learned to accept that I am LIVING with cancer.

I was devastated when I had my first recurrence, just like when I was first dx.  My son was in Iraq and I had to tell him on the phone after not telling him for so long, he was so mad at me and felt betrayed. 

My mom had ov cancer 20 years ago, she was given 10 % chance of living if she did chemo and 5% without. She has never had a recurrence and turns 71 this month.  Don't let anyone give you an expiration date, but don't Stuff your feeling either.  They are very real and you do what ever it takes to get through this. Prayer council 3rd opinion ect

My mom always tells me to pull up my big girl panties...... well sometimes I am wearing them around my ears....but I still fight and fight some more.  This is not a easy road but with family, kids, friends, and lots of prayers it can work

 

My thoughts and prayers are with you, Lisa

 

RE: Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by missmom on Thu Jul 29, 2010 05:42 PM

Quote | Reply

Hi Itsallgood,

Thank you so much for your kind words. Its nice to know someone understands. I feel like just when I started to crawl up from the original dx I got knocked down flat, again with the recurrence. I have so many different feelings from minute to minute, from anger to sadness to disbelief. I am totally devastated but your mom is right...It's probably time to pull up my big girl panties and learn how to manage this evil. I guess thats what I have to work on now, making the choice to "live" with cancer rather than not living at all...so thats what I'll try to do. 

And bless your mothers heart for defying the odds. Thats exactly what I hope and pray for, not only for myself but for everyone of us "living" with cancer.

Thanks again :)

RE: Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by FIGHTER34 on Wed Oct 27, 2010 06:41 PM

Quote | Reply

On Jul 29, 2010 5:42 PM missmom wrote:

Hi Itsallgood,

Thank you so much for your kind words. Its nice to know someone understands. I feel like just when I started to crawl up from the original dx I got knocked down flat, again with the recurrence. I have so many different feelings from minute to minute, from anger to sadness to disbelief. I am totally devastated but your mom is right...It's probably time to pull up my big girl panties and learn how to manage this evil. I guess thats what I have to work on now, making the choice to "live" with cancer rather than not living at all...so thats what I'll try to do. 

And bless your mothers heart for defying the odds. Thats exactly what I hope and pray for, not only for myself but for everyone of us "living" with cancer.

Thanks again :)

Im a rare survivor of sertoli leydig cancer,and my heart hit the floor reading your post! That was back in july,i was hoping things changed for the better for you,seeing it is now oct.i actually have battled this obnoxious cancer twice,and somehow am still here to talk about it! Please get back to me if you would like to talk! I would really like that! :)

 

 

RE: Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by Dee55 on Thu Oct 28, 2010 01:01 AM

Quote | Reply

Hi Lisa,

 I don't know about your kind of cancer but I know some of your pain.  I have Granulosa Cell Tumor of the Ovary which is rare too, but maybe not as rare as Sertoli Leydig.  THe "C" word is so scary.  I was diagnosed last November and I still don't think I have adjusted to it.  It is like a 10 ton weight hanging over your head and you don't know when it is going to drop.  I don't know if I ever go a day without it crossing my mind.  It makes you think about enjoying your life now because you may have only 5-20 years.  You don't know.  It makes you not want to put up with a bunch of drama either.  Just let me be happy and and at peace or go away LoL. What is the best way to think about it?  Be positive at all times?  I have decided to try to be realistic, I have cancer, it probably will be back at some point (unless God healed me with all the prayers :-) and deal with it.  But it is hard to get your mind around the fact that you even have cancer! 

  I have a lesion in my vagina that they took a biopsy of about a week ago.  I find out tomorrow if it is a recurrence or not.  I am thinking it's not anything but the fear is there.

  Good luck and know that you are not alone.  It appears that people adjust with time so there is hope for us yet!  Dee

RE: Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by lynn.b on Wed Nov 03, 2010 08:31 PM

Quote | Reply

hi lisa i have just read your story i dont know anything about your cancer but i was dx ith granulosa cell tumour of the ovary another rare cancer last march all removed but have had a recurrance in lower bowel i completly understand what you are going through and we are all here to help each other because only we know what each other is and has been through try and stay strong and think of your family my thoughts and prayers are with you lynn xx

RE: Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by mntnsky8 on Thu Nov 04, 2010 02:33 AM

Quote | Reply

Hello missmom,   Wow...yes doll it is very hard to deal with cancer, please remember, cancer does NOT have you, you have cancer....really try to first believe that,  K.???...I do know what I'm talking about when I talk about my cancer experience.....I've had to come to terms after 9 years that I will always have to do some kind of treatments to live on this Beautiful planet.

I was diagnosed 3rd stage ovarian serious kind of diease in 2001....don't remember the exact name of it right this moment, but it has been hard to "keep at bay " so to speak.....but I wouldn't change anything of choice of treatments,  and I will do anything to keep it down.

I have done chemotherpy 4 times in the last 9 years,  I've done radiation to shrink a tumor that spread to my colon,  just to have it grow back a year later and I had to have surgery to remove my sigmoid part of my colon,  which caused a colostomy bag for a year..whew.!!!!!!!  And that's a Whew in more ways than one..lol...

January 29th 2010 they did surgery and put me back together,  so now here I am,  back to normal, not going in a bag anymore..YES.!!

I've been in remission again for a year and a half......And recently my dr. told me my cancer marker number is going up again..so now I have to have a colonoscopy asap, and a pet scan..

Yes I'm mad,,didn't take it very long this time...but that's okay..cause i win!!!!..the last 9 years have been wonderful years full of new grandchildren, very fun times,  and hellva good moments that I wouldn't have had if I would of just given up.

And there are going to be more,,I've learned to totally live in my moments..there're so precious and no one, not even cancer can take those..!!!!!!

I know your scared, I know your mad, I know the Why me, what did I ever do?,  I'm a good person...I know all these feelings and more,  you have to let yourself feel all these things to get through this,  so be angry,  cry,  go somewhere where you can scream your head off,  it sounds crazy, but it helps...get mad, let it out, then get to bussiness to KICK it's butt.!!!!!

                        message me and I'll try to help as much as I can,  believe me I DO know how you feel...

                                 sincerly Rhonda

 

 

 

 

 

 

 

 

RE: Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by Gosia76 on Sun May 29, 2011 01:32 PM

Quote | Reply

Hi Lisa,

I have been diagnosed with Sertoli Leydig cell tumour in December 2010. My world turned upside down when I heared about this disease through histopathology results. I had to undergo the second look surgery under gyn/onc in February 2011 and he didn't see any other changes on the outside surface of my ovary. He took some biopsies and they returned negative. I didn't get any treatment options after all these surgeries.

Just 2 months after last surgery I felt it comes back again as I get symptoms like right ovarian sided pain where i had this tumour (exactly the pathologist described these cells of sertoli leydig have been found on the ovary and in the Douglas pouch), have swollen lower abdomen, bloating, pelvic pain, frequency urination and indigestion problem as constipation and changing in bowel movements. 

My emotions went up and down as I have been diagnosed just 3 days before New 2011 Year and I was alone in UK because my all family is in Poland.

After contacting with my oncology nurse she told me they don't know why i get these all pains and moved my apps for earlier dates for mri scan and app with gyn/onc. I have mri scan on 2nd June 2011 and gyn/onc app on 9th June 2011.

As far as I know doctors don't know so much about our kind of cancer as it is very rare.

How are you doing now ??? How did you get on chemo ?? Do you need anymore treatments ??? I hope there is something what can help to beat it and i hope the doctors will know more about this type of cancer very soon to be able to help us more.

Thoughts and love go into your way

Gosia xxx

 

 

RE: Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by soluna on Sat Jul 23, 2011 02:45 AM

Quote | Reply

Hi Lisa,

How are you doing so far? I hope everything is all right.

I recently discovered that I have Sertoli Leydig stage 1A  as well and got my right ovary removed about a month ago. My chemo therapy will start next week and after reading your post, I'm quite terrified about recurrences and that I have to remove my left ovary too :(

you mentioned alternative treatment and I'm wondering how that's going with you... maybe it's something I should consider as well.

and for others who have this rare disease, I'll try to update my treatment experiences here or in a blog, which I'm planning to start soon.

RE: Sertoli Leydig Recurrence...My Story - HOW Could This Happen?

by fiestafairy on Wed Aug 03, 2011 01:05 PM

Quote | Reply

heymy names kathy im 24 and ive had a sertoli leydig stage 1c ovarian cancer too, it took me two years to get a diagnosis and even then they were'nt sure! it was a nitemare, i had problems with cystic ovaries for a while and they removed the cyst that was on my ovary, about 6 months later after i had forgotten about it all i got an appointment letter through frm my hospitals oncology dept at this point im thinking w.t.f!!! and when i rang them they told me that it shouldnt have been sent out before consultant had spoke to me!! total balls up if u ask me! and then when i went to see the consultant he was soooo patronising, he said to me '' what you have s very very nasty'' and thats all he said to me!! i had to ask the nurse there if i had cancer or not!

then i got refered to a different hospital and they then told me it was a sertoli leydig germ cell tumour and that they needed to remove the rest of my left ovary, hby this time im shitting a brick but to be honest i was kind of expecting it lol xx then i have surgery they chop out my ovary and then i get refered to another hospital to have my chemo which was bep chemo, i had my first lot and then a week after i had a top up at my local oncology department, the nurse took some blood and i wasnt feeling well but they still gave me the chemo n e way, a few hours later i got rushed to casualty cuz my white cells were so low they were off the scale!! after that my chemo didnt go too bad but towards the end of it all i had  problem with my calcium levels which was soo bad it made my whole body cramp up, i couldnt breathe and nearly died cuz my heart was in spasm, i spent 3 weeks in the endocrinology ward and then got sent to have my last lot of chemo,... yep i did lose all my hair but that was the least of my worries lol  but n e way a year on and im still here and my hair is slowly but surely growing back altho i cant realy do nothin with an afro!! xx n e ways i know i didnt exactly have the best experience ever but im here at the end of it xx

47 Posts | Page(s): 1 2 3 4 5  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.