I'm 24 and I feel Doomed- A rare Case - 28 reported Worldwide

Hi guys,

Here is my story...

A couple of weeks ago I went to see my OBGYN for general checkup. I was experiencing left side abdominal pain and pain during intercourse. Not so serious, I thought at most it would be an ovarian cyst or something along those lines...

My doctor then found a fluid filled mass about the size of an orange which he later thought to be a Teratoma. I sceduled my surgery for the 8th of Feb. Removal of cyst via C-Section.

So I went in last Wednesday, full of hope and just wanting it to be over. I was dreaming of how normal I would feel again after I healed from my surgery. I take my pre-meds, I'm feeling all spacy and lauging myself silly all the way to the theatre!

Then I wake up....

Still all groggy, I see my boyfriend of 8 years next to me on my right and my doctor on the left..

They don't look happy. Doctor: " The mass burst open as we made the incition and we had to rinse your organs with a saline solution, thats the cause of the pain you are experiencing."

ME: "But it's out right? I'm okay..."

DOCTOR: " I have bad news... All your reproductive organs are riddled with tumors. I took out what I could, the largest ones and I'm sending them for testing. I've never seen anything like this"

ME: " I can still have children right? "

DOCTOR: " Unfortunately not, if you were a little bit older I would have performed a full hystorectomy without even asking you, but considering your age, I knew you wouldn't want that"

ME: "I don't...understand, what is it?"

DOCTOR: " It looks like cancer, Im pretty sure it's cancer. The problem is- if you go for chemo therapy, you would have to gain about 10 - 20 kgs first."

ME: " Can I not get pregnant before I have the chemo? "

DOCTOR: (Hesitant) " You don't want to put the child in a position where it doesn't have a mother. Regarding the chemo, I will make sue you get th absolute best treatment possible."

He leaves....

I remember the feeling of it all being so surreal.... I say to my bf " I'm dreaming. I'm dreaming and I'm going to wake up.. Why on't I wake up?!"

I couldn't even cry...it hurt too much in my stomach. After that, I was pretty numb emotionally. I still haven't criend. I'm really trying to be positive.

This is of course when they moved me to a private room at not extra cost I waited 3 days for the pathologists to figure out what it was. My doctor phoned me with "The best news in the world, it's tme to crack open the champaigne"

DOCTOR: "It's NOT cancer. You have something extremely rare. It's called Beinign Multicystic Mesothelioma.- Not asbestos related. There are only 28 cases reported worldwide"

There are 140 cases in litterature, I checked but those were related to asbestos xposure.

I have read all I can on this subject and can't really find a cause apart from abnormal tissue growth due to damaged DNA.

My question is, to anyone who might know anyting about this. is: Seeing that it's beign... would I still have a chance of getting pregnant and having a successful pregnancy?

AND - Is there a diet or supliment I can take to shrink the remaining cysts?

I really would appeciate any advice on this as I am reaching the end of my string here.

Love,
T_H

First. I'm so sorry for what you are going through. It must be mind numbing, and frightening.

Second. I would get a second opinion as to any relation to asbestos. You've had one Dr. tell you it's not, I'd want to hear that from at least 2 Drs.

Again, So sorry for your pain, physical and emotional. . Prayers for Strength, and Health.

Des

Wow, thats awful. I hope you make a full recovery

But at least it is Benign...

Perhaps consider getting the full hysterectomy?
I mean, being infertile isn't the end of the world. You can always adopt.

Chemotherapy is very toxic to the body and depending on the type can make you infertile itself.

Wow, I'm so sorry you had to go through that. While I'm sure you're relieved it's not cancer, it's still a mind job.

I have no medical advise but hope the best for you. What a nightmare.

reply to post by Destinyone


Thanks Destiny

We definitely will need to get a second opinion. My doctor is quite young, 36. So will need to find someone that has a little more experience. The problem is finding a doctor that has eperience with this specific problem, because is so rare, I think that might be difficult. Still worth a shot.

reply to post by Tripple_Helix


Dearest Tripple Helix,

I am so sorry that you have to go through this.

My question is, to anyone who might know anyting about this. is: Seeing that it's beign... would I still have a chance of getting pregnant and having a successful pregnancy? AND - Is there a diet or supliment I can take to shrink the remaining cysts?

As for your question, only you can answer it. Would you have wished that you mother had never had you if if meant that you would have to pass this genetic issue on to your children? If you say that even if it had been genetic problems then you would still want to be alive then you should feel free to have children.

Young lady, I truly am sorry that you must face such a thing. If you cannot have children, you can still adopt. My oldest is 28 and I began caring for her at 1 1/2 years old, she is my daughter because I raised her. I hope that you can have children, I hope it all turns out well. Peace.

reply to post by Tripple_Helix


Wow I normally don't get very caught up in other people stories, whether they're positive or negative or whatever but reading this I was extremely glad to hear that your condition is at least benign..

So happy to hear that it isn't cancer. That's all I can really say right now - I have no medical advice or any asbestos/mesothelioma information for you. Just wanted to say I'm happy for you and I wish you and your boyfriend nothing but the best. And glad you've got someone you've been with for so long while dealing with this

Originally posted by Tripple_Helix
reply to post by Destinyone

 

Thanks Destiny

We definitely will need to get a second opinion. My doctor is quite young, 36. So will need to find someone that has a little more experience. The problem is finding a doctor that has eperience with this specific problem, because is so rare, I think that might be difficult. Still worth a shot.

I don't know where you are located. May I suggest you look for a Research Hospital..You will have much better luck finding someone in a teaching/research facility. I was diagnosed with a rare bone disorder in my early 20s. Stanford Hospital in Palo Alto Ca. offered all medical treatment to me for free, due to the rarity. Stanford Hosp is a working research hospital. They wrote off my treatment as part of their research budget. Also contact the CDC in Atlanta Ga.
They are a huge research facility connected with Emory University Hospital in downtown Atlanta. If your diagnosis is that rare, you will find a place that will help you for the research and what goes with that, alone. They look at the medical papers that can be written up, to add to their resumes in applying for future grants.....

At the very least, you will get help in locating a medical specialist to help you.

Good Luck, and Bright Blessings

Des

I would recommend that you look in to the raw foods diet, specifically the more cleansing, therapeutic versions that are low fat, low sugar, high in green foods. Google "juice feasting". I did a 105 day juice fast, mostly green juices, that was the most amazing, healing experience I've ever had. If you have any questions, feel free to message me. Good luck and bless you.

reply to post by Tripple_Helix


Along with a second opinion I'd maybe at least ask the advice of a reputable homeopath or healer (sorry if that sounds ridiculous to you, I take health seriously even though I'm not in healthcare).

It breaks my heart to hear another fellow human affected by such an unknown disease. My best wishes are with you for an answer and a speedy recovery.

Another note: I've been watching/researching Ozone therapy for various ailments, it might be worthwhile finding material on it, or call a Ozone (oxygen) treatment center to see it they can give you more info

reply to post by Destinyone


I will look into that. I am in South Africa. If I am correct, Tygerberg Hospital is the only one of that kind in the Cape, where I am. It doesn't have a very good reputation but aparantly the cancer ward is top notch and the best docs are available there.

I will do some digging on that and see what I can find.

Thanks again

And thanks to all that have posted.

I apreciate the support.

I am terribly sorry for your current condition and what you must be going though. However, I feel the need to ask if you really think having a child would be a good idea with your health situation? Is this a condition your child might be prone to getting? I know that many people, including myself, want children, but it's just not necessarily a good choice. As I've gotten older, I've realized how unlikely it is I will ever have children, but am also ok with it due to the condition of the world we live in. Give yourself time to get through this and heal before re-considering pregnancy and child rearing. Adoption is a wonderful consideration. My parents did it.
Again, just focus on healing and getting through this difficult time.

John369 nailed it. Switch to all natural soaps, deodarant, toothpaste, ect as well. Vitamin D suppluments is good too. I take 10,000 ui or iu everyday. Vitamin C is great. High doses. Grapeseed and Flaxseed oil should be in your diet. Good luck.

I'm sorry you are sick and having to go through this ordeal.

I would like to offer you some hope and my prayers for recovery as quick as possible.

An old housemate of mine was diagnosed with ovarian cancer in her mid 30's.

She received chemo and had to go on sick leave from her job. She temporarily lost her appetite, lost weight, lost some feeling in her hands and feet, could no longer drive a car for safety reasons and had many mornings and days spent throwing up and dry heaving in the bathroom.

Fortunately, the chemo and other treatments were successful. Her hair which had fallen out due to the chemo therapy grew back, she regained her appetite, went back to work, regained the feeling in her hands and feet and later got married to her boyfriend who had stood by her side and supported her through her sickness and recovery.

Today she is doing fine and is quite healthy. Although she can not have children, they are a very happy couple and they always have the option of adopting a child.

A few things that helped her in her recovery was a strong will to live, faith in God, trust in her doctors, love & support from friends & family and a little medicinal marijuana to help with the nausea, vomiting and appetite.

I hope you get well soon and God bless you.

This is a good documentary on another alternative treatment



You can find the rest of this documentary here

www.youtube.com...

reply to post by Tripple_Helix


Do you still produce eggs? If you do you could theoretically use a surrogate. It would be very costly though.

I really think it would be impossible for anyone here to give you real insight or advice.
They would have to know exactly the extent of the damage and then they are still amateurs. Go to an OBGYN and doctor focusing on reproduction, find out if it is possible at all, then if it is start fertility treatment maybe.

Did you not go to an OBGYN ever before? Seems like they would have caught it at a much earlier stage.

I just happened to read this thread before I go off to sleep.

I have to say, I'm deeply sorry you have to go through all this.
I have been there twice with my mother (cancer)

Just stay positive, pray, and let people pray for you.
Much love and I hope you feel better soon.

reply to post by GogoVicMorrow


My OBGYN didn't even catch it this time until they cut me open. All my initial tests, scans, bloodwork and papsmears came up normal.

reply to post by Tripple_Helix


Ah.. that's crazy. Sorry, good thing it wasn't cancer though. If you find out you should come back here and let us know, I'm sure everyone here would like to know. I wish you the best of luck.

Sad to here, have you looked into vitamin D3 supplementation during the day

Low vitamin D levels are associated with some cancers.

Medical experts around the world are talking about a new epidemic, a health concern that may be dramatically increasing our risk of cancer, hypertension and even diabetes – it’s a lack of Vitamin D.

and melatonin 3 before bed?

A systematic review of unblinded clinical trials involving a total of 643 cancer patients using melatonin found a reduced incidence of death.

Another clinical trial is due to be completed in 2012.

Melatonin levels at night are reduced to 50% by exposure to a low-level incandescent bulb for only 39 minutes, and it has been suspected that women with the brightest bedrooms have an increased risk for breast cancer.

Reduced melatonin production has been proposed as a likely factor in the significantly higher cancer rates in night workers.

It is estimated that nearly 70% of biological damage caused by ionizing radiation is attributable to the free radical, especially the hydroxyl radical that attacks DNA, proteins, and cellular membranes. Melatonin has been suggested as a radioprotective agent, with the proposed advantages of being broadly protective, readily available, orally self-administered, and without major known side effects.

Just a thought sorry i couldn't find more to help you
Cancer is DEAD: Cancer cures from A to Z

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reply to post by Tripple_Helix


I'm so sorry you had to go through that ordeal...but the outcome made me feel so happy for you, hopefully you can have children, i pray you can!

I don't think a second opinion is necessary because he isn't actually conducting the tests, the lab will have provided the results and he will have interpreted them...which, with it being such a rare case, he will have sought a second opinion anyways so i wouldn't worry there!

Good luck with everything!!!