IamA 21 year old girl with a rare tumor in my abdomen which has nearly grown to the diameter of a regulation soccer ball. AMA!

All this to convince your boyfriend you aren't pregnant...

Haha, if only I could carry a child in the upper left quadrant of my abdomen.

• What are you studying in college?

• Have you been happy with the medical care you have been given?

• What does it feel like? Is it painful?

Thanks for doing an AMA, I for one just learned about desmoid tumors for the first time and it sounds like a terrible thing to have. All the best to you!

My major is Law & Society, and my minor is forensic science. I wanted to go to law school, but I have many reasons not to go at this point.

I was definitely not too happy with my care this time around. Actually, I went to my university's clinic, had a blood test, urinalysis, and X-Ray in March. They wrote it off as scar tissue and constipation. Two months later, I ended up in the ER to find that it was the same tumor I had before. Then, it took another 2 months since we found it in the ER to the time the oncologists decided what to do with it, unsure if they should just do surgery or treatment. It grew about an inch between May and July, so I imagine it grew about two inches since I was seen in March to July. I started treatment to shrink the tumor in July, but it has since kept growing. Now, my doctor's office is so kind and caring. They know me by name even though I've only been there a handful of times. It's probably because I am the youngest patient by about 50 years.

It is actually not as painful as it looks like it would be. The worst problems I have with it are with my stomach. I haven't been able to eat as much as I should since my stomach is getting pushed upward and squished by the tumor. It also tends to press on my ribs when I slouch, so my posture has been great these past couple months.

Thank you very much for learning about these tumors. It is hard to come by much accurate information about them as mine has been slightly different from what many doctors and websites say about it. My first tumor was donated to research though!

One thing i have learned over time is to NEVER trust a damn doctor, i am now on dialysis because they figured it was none of my business to know that my kidney function had been going downhill for quite some time, i am on my final legs, as the one thing they are very happy about letting me know is that this will eventually kill me, so like i said, i will NEVER AGAIN trust a damn doctor, especially one that works for the V.A.!!!!!!! Good luck, i hope everything turns out for the best for you and your health.

I am really sorry about your experience. I understand what you mean about the V.A. My dad has to deal with them as well. I just try to be as informed as possible and very proactive throughout my time to avoid preventable situations like that.

Thanks for the response! It really sucks that the doctors didn't identify it earlier. I hope the situation improves soon!

Stay strong, and continue to appreciate the little things in life. I know I'll think back to you whenever I feel like complaining about something small :) I'm starting first-year university soon and I'm suddenly very appreciative of the fact that I'm healthy.

Thanks again, and good luck. Kick that tumor's ass!

Good luck in school! Always appreciate good health, and remember to study. That first semester is a great time to get off to a great start!

Sigh, even with a tumor you're still gorgeous. Hard not to be envious. Hope you get to feeling better! Has it interfered with your ability to do everyday things?

Stop it, you! Thank you. Fortunately, I don't feel all that bad. I am still able to work and do normal things. The only things I that have changed are exercise and my wardrobe. I used to run, but I have stopped for now since it's a little painful. Also, the tumor is starting to become noticeable so I wear less tight-fitting tops.

Hi everyone. I would edit, but I can't on mobile! I am going in for the nephrostomy and stint in my vena cava now, but I will be back to answer all my questions once I get to my room in the hospital. I will be under 23 hr observation.

Here are a few interesting things about me that might generate more questions:

• I had a wish granted by the Indiana Children's Wish Fund.

• I have had 10 surgeries.

• My belly button was redone by a surgeon.

Thanks so much for the questions. I will be back after my procedures!

A friend had stomach surgery that removed among other things, his belly button. The surgeon reconstructed it in the new skin. I told him that he should convince the surgeon to skip that part and just leave smooth skin. It would eliminate the problem of belly button lint.

Haha! It would be so strange not to have a belly button. I am glad they gave me a new one.

Does it feel the same as a normal belly button? :O That is so odd!

It does feel and look the same. It just has a scar right next to it that makes one side of it a little less round.

I wish you so much good luck today and will be sending positive vibes and prayers your way.

What was the wish you chose to be granted? As awesome as you hoped it would be?

Keep your head held high - you are a beautiful person inside and out.

Thank you very much! My wish was an "electronic shopping spree." I got to pick out a laptop, tv, Wii, games, DVDs, iPod touch, iPod dock, and more.

Didn't that part where they called it "rare" just tickle you? Like, gee, thanks, Doc, aren't I just the toast of the fucking town?

It is funny because my doctors kept saying "Oh this tumor is slow growing." And after it grew an inch in 2 months, they said that it's hard to make generalizations about this kind of tumor since there are not enough cases to study.

I have no questions.. But I just want you to know that I think you're god damn beautiful. And excuse my language but fight that mother fucker with all you got!!

Thank you. You're too kind, and I am grateful for the questionless comment!

Damn, girl, you're a fighter! Is the colostomy permanent? I'm not entirely sure how those work. Are you in the process of getting the new one removed? How is your remaining kidney? What are the chances of these tumors reoccurring? Are they like neurofibromas? Really brave of you to do this AMA.

Thank you very much. I had the colostomy for a year and two months while I was in 8th grade, and it was reversed right after the first tumor was removed. Many people who need to have a colostomy have it permanently, but mine was temporary because my large intestine was accidentally cut during my biopsy and needed time to heal without interruption.

My remaining kidney is currently starting to retain fluid because this tumor is putting so much pressure on the ureter at the moment. I am going to the hospital tomorrow for a procedure called a nephrostomy, a tube inserted into the kidney that will help drain that fluid out. From what I understand, the tube will drain into a little bag outside my body, kind of like a really direct catheter. I am supposed to have that for a few days until we decide what to do next.

My pediatric oncologist who treated me when I was younger said the recurrence rate for this type of tumor is 30%. Its cause is basically unknown because there are so few cases to study.

I am not sure how similar it is to neurofibromas. Fibromatosis/desmoid tumors usually either grow from a muscle wall or bone and don't do much to nerves, in my experience.

Thanks for the questions :)

If you ever find yourself in need of a ride to see a doc or treatment and are stuck I live in Lafayette. You can DM me! Seriously.

Do you do your chemo locally? I am at the Cancer and Blood center every eight weeks here in Lafayette getting my RA treatments.

That is too kind and unnecessary but thank you for the offer. That is so nice. I am sorry you have to go through that. I have a feeling I am at that place you go to right at this moment!

And my chemotherapy is in pill form. I am taking an anti-inflammatory called Sulindac, but that will be changing soon since it has not been effective.

I too suffer from a desmoid tumor , Im also a 22 year old female.however mines in my upper thigh about 11 cm by 9cm. Currently on tamoxifen and naproxen. Waiting to see if I respond or need to do chemo and or radiation. Thank you for doing this AMA, this is truly a frustrating disease. I wish you the best in your treatment and know your not alone!

I am so sorry to hear that. It should work for you. Definitely get a second opinion before you try radiation. I was told that it would have more risks than benefits for someone our age. Stay positive and get well soon!

I am a junior in college as well, and my heart sank upon reading this. I pray you will get better. I know this might be hard to answer, so don't feel obligated to answer, but what chance have the doctors give you to live?

Also, what school do you go to and what your favorite activity there?

Thanks so much. No doctor has discussed my exact chance of living or not, so my loved ones and I are quite hopeful.

I hope it's okay to reveal. I go to Purdue University, and I love being involved in the cultural clubs they have to offer.

Totally random comment but last year my Personality Psych prof posted Purdue's citation guide on his course website for reference and it's my go-to citation page now!

Also, I hope you get better soon, University/College is enough stress without having to go through what you are!

PurdueOWL? It is pretty popular for students, I suppose. Thank you! I switched to all online classes to keep my financial aid and to avoid the stress of missing class.

Thanks for answering, follow up question: What are you most excited about at this moment? Can be anything, open question.

I am excited to move into my new apartment! Though I don't care for the actual act of moving all my belongings somewhere else.

I can relate to that. I hated just moving rooms in my house. lol

So tell me, how are you so fearless? I figured out the Filipina part.

I am fearless because I like alliterations, and I can kill spiders by myself now.

Just wanted to say I am a college male and can't kill a spider. If your story hadn't already made you my hero, the spider killing part definitely did.

Ah, just let me know if you need me to kill a spider for you! Also, thank you. I don't feel much like a hero. I just hope to teach people a thing or two about maintaining a positive attitude during troubling times.

I went to Purdue, too! Graduated about 5 years ago. I had a "nice" encounter with the clinic while I was there as well - although not nearly as bad as yours. They just gave me an antibiotic that made me break out in hives. Jerks. lol

Anyway, I wish you the best of luck! :)

I only found one doctor in that clinic who's actually caring and worth seeing. The lady in the insurance office is also a great person. I saw her a lot when I was struggling with my medical bills, and she loves me now.

Neighbor!!! :) Are your doctors local are they in Indy?

Neighbor? My oncologist is closer to Purdue, but my major surgeries will be in Indy.

How has your view on life and living in general changed over the past few years?

My view has changed for the best. I am much more positive now, and I take time to sit and think about things I truly appreciate and find important.

This is the type of situation that makes you realize the problems you thought you had before are so minuscule. I feel like I never had anything to complain about prior to my diagnosis. Car problems, relationship problems...none of that is something to be devastated over. I tend to get a little annoyed when I see people on Twitter complaining about the smallest things, but people complain. It's what they do. Everyone thinks their problems are terrible until they get worse.

Everyone thinks their problems are terrible until they get worse.

This is the best way I've ever heard anyone put it. I think you're amazing. You have a great attitude and that's really important. My aunt has severe neurofibermetosis, so I can confirm that this is nothing similar. However, I would like to ask, when you're feeling down what do you do to feel better?

Thank you. I still cant quite find the words for it, but that was what i came up with.

When I am down, I play League of Legends, browse the funny part of Reddit, cook, or try to take a nap. Worrying about my illness all the time doesn't help anyone.

No question. Just came to say that you're very pretty. (:

Thanks, bonejunky!

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Thank God you are fortunate enough to not have a brain tumor. Those are some of the worst. I would definitely keep an eye on that and be sure the pressure, ringing, and dizziness don't get any worse. Also, thanks very much. I have a fantastic support system, and I feel great in spite of everything!

When you get this tumor removed, how will your organs function? Like, will your kidney get better? Will you be able to have kids some day? That type of thing.

It's hard to say how normal everything will be after this. I sure hope my kidney returns back to its happy self after this is all said and done. I am really unsure of how my colon will be after the surgeries. I very well could need another, possibly permanent, colostomy, but that's all speculation. As far as having children goes, I kind of doubt I will be able to have any due to all the surgical disturbance that's occurred in my abdominal area. It hasn't been discussed in depth at this point, but I will be asking my doctor questions like this soon!

It is inspiring to hear from people such as yourself who can have such a positive attitude without delusion. What you have created with this post is far more personal than an article or scientific journal, it has such a powerful emotional impact. It inspires people such as myself, who during the majority of day to day life are so far removed from the need to realise true strength. Strength such as yours is something that most people may never have the need to find, and their life will be the poorer without it. It reminds us how spectacular life is, to be grateful, to reflect. That life exists at all is something to marvel at, let alone that we have the ability to marvel, and to have emotions set alight by someone we will likely never meet, and to be gloriously unified in that we all instantly care about your wellbeing, and envision a bright future for you; its an amazing feeling, and we have you to thank. I am grateful to have had the pleasure to know you, the fragment of your life you have shown us has enriched our own.

With love.

Wow, your comment made me feel amazing. I am so glad I could have an effect on you. Thank you so much. I don't know what else to say but thank you.

True strength can often be quite a sight to behold. Thisisareddituser put into words how we all feel, reading through this post. You are a strong and beautiful young woman. Now, some questions of my own, if you don't mind!
Do you watch any TV series? If so, what is one you would recommend?
If you don't mind reading, what are your preferred genres?
Favourite artists/genres of music?
Tea or coffee?

Thank you for the kind words.

I like to watch Supernatural, Desperate Housewives, and definitely a lot of Food Network like Chopped and Restaurant Impossible. Kitchen Nightmares is far better, though.

I enjoy reading from time to time. I mostly find myself in Stephen King books or other types of mystery/horror novels.

Don't make fun of me, but my favorite artist of the moment is Maroon 5. My all-time favorite is Red Hot Chili Peppers prior to their latest album.

I like both tea and coffee, but you will find me drinking coffee much more often.

I wish you the best of luck. You're probably sick of hearing this but youre beautiful.

No one gets sick of that. Thank you!

How many people have mistaken you for being pregnant?

None in real life. I wear loose clothing. One in reddit life: /u/nickylee3

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Hey, thank you! I may forget, but yes, if you really want to! I am usually the one to feed people, but that is a kind change of pace. I will have to find out when my surgery is and whether or not I will be able to eat anything while admitted into the hospital.

Did you ever have to use the phrase, "It's not a baby, it's a tumor!" {shameless Hellboy sorta quote there. ;) }

Haha nope, thankfully! I bet that would be embarrassing for someone mistaking my tumor for a baby.

No questions.

Just survive and have a good life.

Thank you! I hope you also have a good life.

What did you get as your wish?

A laptop, TV, ipod touch, Wii, TI-89, dvds, games, ipod dock, and dinner at Outback Steakhouse with the woman working for Indiana Children's Wish Fund. There may have been more, but I fulfilled the wish at 17 and can't remember it all right now.

What is your prognosis? Is there any chance of just surgically removing the tumor or do you need to go through chemo again?

No doctors have given me a reason to believe I can't get through it, so that's good enough for me. This tumor actually does not respond that well to traditional IV chemotherapy (though I had chemo before), so I have been taking an anti-inflammatory, Sulindac, to shrink the tumor before surgery. So far, the tumor has not responded to the pills, so my oncologist suggested we surgically remove a portion of the tumor to relieve pressure on my stomach, kidney, and arteries while we figure out what to do next.

Is the composition of the tumor preventing doctors from removing the entire thing at once? I'm guessing due to its size it is likely a lot more than simply cutting that thing out of there.

The size and surrounding organs are keeping them from removing it all at once. It is currently compressing my vena cava, stomach, and ureter of my only kidney. Surgeons recommended shrinking it prior to removal just to shrink it away from vital parts in my body that are difficult to cut around. One surgeon even suggested that we have a transplant team take my kidney out, put it on ice to keep it out of harm's way during surgery, and put it back in once the tumor was removed. Soon, I will be getting part of it removed, so that will feel a little better before starting treatment again, then removing the rest.

I'd bone you.

You still got it.

Hey, I do appreciate that!

I am very confident you'll pull through! I am wondering though,

• Do they have any idea why you have had cancer since a young age?

• Does your family have a history of cancer?

• Was your lifestyle relatively healthy? etc.

Cancer seems like such a mystery, it's depressing to acknowledge how hard it is to prevent.

This type of tumor is benign. It just had a tendency to grow quickly and be mean to its surroundings. My family does have a history of cancer and potentially this tumor on my mom's side, but my older Filipino family didn't really believe in going to the doctor. Also, my mom's interpretation of our family's history of tumors and cancer has been vague as she is 100% Filipino and never really dealt with it herself.

My lifestyle was relatively healthy. I used to go to the gym, walk around campus, not drink much, and never smoked. I just never was able to eat much and probably didn't eat the healthiest food, but I am 5'1 and 100lbs. I was decently healthy.

Sorry for being so blunt; what are your odds?

God bless you. ♡

No one has discussed any odds with me, so I feel good about my chances. I definitely have plans for when all this is said and done.

Best of luck for your surgery. You're a brave and beautiful girl!

How were you first diagnosed when you were thirteen? Were there any notable symptoms?

I went in for a regular check up, and my pediatrician found a lump when she was feeling my abdomen. She referred us to a surgeon and I had spent 9am-4pm getting test after test. They weren't sure if it was cancer or not until my biopsy was done. My surgeon accidentally cut my colon while trying to take a slice of the tumor for testing. I was in the hospital for 9 days without being able to eat. After that surgery, we got the diagnosis and started a clinical trial/protocol to treat it.

You poor thing. It's really fortunate that your paediatrician found it so early on.

Have you had your surgery? How did it go?

I just got a stent in my vena cava and a nephrostomy yesterday. My next surgery to take out part of the tumor should be soon. I am taking it one day at a time so far!

You're incredibly brave, you know? You've got such a positive and upbeat look on things! You'll go far with a wonderful attitude like that!

The best of luck to you with everything!

If I weren't brave and positive, I would let my illness own me. I can't allow that! Thank you!

I have a desmoid too, about the size of a grapefruit. The only symptom is my waistline doesn't change when I suck in my stomach, leaving a concave from the sternum to navel. Are you on sulindac therapy? It's a prescription level anti-inflammatory that's been shown to slow to stop desmoid growth.

I had surgery about 10 years ago for familial polyposis, which consisted of my entire colon removed. Well, I hit just about every compilation short of death or paralysis, and that was the start of the desmoid.

A 18 month chemo regimen showed no progress, with slight increase in the time. So my oncologist switched me over to sulindac twice daily, and now my ct films from five years ago are practically identical to the current scans. She has one other patient that is on sulindac for the exact same type tumor, with nearly identical results. Plus, I'm never sore anymore, though I do have to watch my fluid intake, since the med is a little rough on the kidneys.

That's about the size my first tumor was. That is still nothing to sneeze at. I am currently on Sulindac, but it hasn't stopped the tumor from growing. I am only on it once a day. When I was being treated for this the first time, I was on Sulindac and Tamoxifen before I was switched to IV chemotherapy. The Sulindac has been rather hard on my stomach, so I have to take Prilosec with it to avoid bad stomach aches. I am glad I found someone else with this type of tumor (just so I know I'm not the only one) and that the treatment is working for you. Keep fighting and good luck!

I wish you all the best! My Poppy (Grandpa) was diagnosed with a "type of leukemia" (the doctors aren't really sure what it is, but it behaves very similar to leukemia), and lately has not been doing well. He has five kids and lots of grandchildren so he gets asked a lot about the same things and doesn't really enjoy discussing it, so I normally don't bring it up and just try to enjoy my time with him.

He, like you as it seems from the picture, did not lose his hair during treatment. Do you know why that is? Does that only happen to some people? I have been curious but didn't want to ask him. Thank you for doing this AMA, stay strong!

I am so sorry to hear that. It is probably best to just enjoy your time with him and ensure he is as happy as possible when you're together!

I didn't lose my hair at all when I did any of my treatments. The pills I took, an anti-inflammatory and estrogen blocker, are normal medicines and don't have that type of effect. When I was on IV chemotherapy, I didn't lose my hair, though it thinned a little bit and made my skin a little grayish when I look back at pictures. It really depends on the type of medicines are used in the chemo treatments. I had a mix of vinblastine (sp?) and another medicine. It was a mild combination compared to what some cancer patients have to get, so I was able to keep my hair. If your poppy is getting radiation, he should only lose hair in the spot being treated. His treatments may be a little more mild and have fewer side effects.

Take care and feel free to ask me anything you are afraid to ask him!

I have fibromatosis as well!

Mine developed mainly in my hamstring (which has since been removed), and was the size of a football when it was removed. I also have 2 smaller tumors in my calf, and one reoccurrence in my hamstring after surgery.

I hope you're doing well, and that everything goes okay. I know it can be extremely scary. Stay strong, my dear!

Hi, and I am so sorry that you have to deal with the same type of tumors! I am doing okay, now waiting for surgery on Friday. I can't imagine a football sized tumor on my leg! I am glad that is gone. Did you get the others removed as well?

It was kind of in my leg, rather than on it. It essentially took over where my hamstring was. I was lucky, actually, there was a serious chance of them having to sever the sciatic nerve that runs down from the base of your spinal cord, through your leg, and to your feet. The tumor was effectively wrapped around this nerve. This would have left my leg essentially paralyzed. but luckily my surgeon was able to avoid severing the nerve.

The only complaint I have is the pain caused by scar tissue surrounding the sciatic nerve. It was a lot worse in the first 2-3 years, but seems to be getting gradually better. I was taking Celebrex up until recently for pain, but decided to stop as I believed I could handle the amount of pain associated with it now. I was told it could take up to 7-8 years for my leg to begin to feel "normal" again.

Currently there are no plans to remove the others (thankfully). The main reason for that I think is because my leg has already been radiated, and the others weren't discovered until about a year ago. My doctor is reluctant to do a second surgery as radiated skin doesn't always react well to surgery. I'm okay with the smaller tumors staying in as long as they continue to remain stagnant.

I'm fairly certain they were always there, I just attributed the soreness/swelling in my calf to fluid build-up caused by surgery (because they also removed lymph nodes, etc).

I'm currently taking tamoxifen, a hormone inhibitor usually used for breast cancer patients. Luckily, it seems to be working and none of the tumors have grown since I started taking it.

You seem like a sweetheart. I'm sorry, I don't have time to run through all the questions/answers regarding your surgery on Friday. What are you having done? You've mentioned in here somewhere that you've had 10 surgeries? Were all of these for tumor removal?

Wow, it seems like a good plan to keep the tumors at bay rather than to try more surgery. Tamoxifen has shown the best results for me personally, but the side effects are not very desirable in combination with Sulindac.

My 10, now 11, surgeries were mostly related to the mistakes from my first surgery. I had a biopsy where the surgeon accidentally sliced my colon and then about 5 or 6 additional surgeries due to problems that caused. I had infections, abscesses, and a colostomy, but that can't be undone so I don't worry about it much.

Friday, I am supposed to get the entire tumor removed in Indianapolis. I will have more of my colon removed, get an ileostomy until my colon heals, and get a stent placed in my ureter as far as I understand. Then after 8 weeks, I get my ileostomy reversed, and I should be healthy again!

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Thank you so much, girl! I am glad I can have a positive effect on you. I will always be fighting as long as I have to. I appreciate it!

Are you getting surgery again?

Yes, my next surgery will be to "debulk," or remove, part of the tumor to relieve some of the pressure it is putting on all my vital organs and blood vessels. After that, I should be put on a different treatment before I have surgery to remove the rest of it once it is small enough.

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Wow, GDC. Of course I remember you! Thank you very much. I truly appreciate that you're praying and thinking of me.

Hay gurl. /s

Seriously though, I'm 22 and I feel like I'd just shut down and mope if I ever got news like that. I fall into the "complains about silly things" camp. I will keep you in my prayers. Your smile says you're a fighter!

Edit: how much did the first tumor weigh?! I'm curious.

Don't worry. Everyone complains! I really wish I knew how much that tumor weighed! It is far away in a lab somewhere now.

Hello!
With all that has happened in your life, I imagine it has put you quite a few (more than ideal) rough spots. I read through the entirety of this thread and you seem to be a really cool, down-to-Earth girl who's try to send out the right message to those in need. Seriously, that's awesome. Due to all the unexpectancy and mystery of the desmoid tumor (or anything else that has happened), have you felt the need to turn to spirituality/religion for anything?
I can only imagine how boring it must be, post-surgery in the hospital! As a Buddhist, I truly appreciate your perspective of life. I am a first-year in university, and I cannot fully contemplate the impact (all) has had on your life.
I'll most definitely be meditating for you! Have a good rest of the day/night!

Thank you very much, and good question! Yes, I am fairly new to being Christian. I am still trying to understand faith. I turn to prayer when I am feeling especially down. It helps bring me closer to God and helps bring me peace during tough moments. Also, thank you for meditating for me.

You're incredibly beautiful, had to get that out of the way. In any case is the reappearance of the tumor because the surgery was botched and they couldn't remove it all before or is it a separate occurance of the same type of tumor? I assume since the diagnoses of another tumor they are going to be starting radiation therapy again. I send my wishes for as quick and safe recovery as possible to you. Ever get depressed and need a chat buddy I'm down and I'm sure many others will be as well.

Stay strong.

I believe it is a separate occurrence of the same tumor. Thankfully, I am not going to have radiation therapy except as a last resort. This type of tumor is odd and doesn't respond well to traditional treatments for cancer and other tumors. Thank you very much for the support. It really does mean a lot to me.

You're beautiful.

Best wishes to you xoxoxo

Thank you so very much!

How was it dealing with the tumor when you were in your teenage years? Did your friends know about it? Or did you have to take ridicule from other people.

It was very weird to have the tumor in middle school. Everyone in school kind of knew about it but didn't understand. I barely understood what was happening to me. They started rumors that I had cancer or died while I was out of class. No one made fun of me or gave me a hard time as far as I remember. The only tough part about it was having a colostomy in 8th grade. I couldn't get close to anyone to hug them. I had to wear long and loose shirts. I had to hold my arm or hand over that spot on my abdomen during class so no one would hear it. I also had to empty and change colostomy bags during school. One of my friends accidentally touched it through my shirt once and the look of sadness and concern in her eyes was awful. I am incredibly grateful I don't have that anymore.

I volunteer in my local pediatric cancer center... I'm sorry to hear about your condition. I must ask though, you state a diagnosis of fibromyalgia on top of your tumor. What affect does fibromyalgia have on your condition and the treatment of your condition? Also this next question may sound strange however I have to ask because of the debate even in the medical community--do you believe fibromyalgia exists?

I suppose with the abdominal tumor you have blood donations or marrow donations don't help do they?

That is a wonderful thing to spend your time doing. :) I don't recall saying anything about fibromyalgia. My tumor is called fibromatosis, though. I wouldn't say it doesn't help to donate marrow or blood. I had a blood transfusion when I got my first tumor taken out, and I will always be an advocate for donating blood, though I have never been able to do so myself. I only weigh 100lbs..

I'm sorry that's what I get for reading without my glasses on. You are right... I read that sentence as fibromyalgia AND a Desmond tumor... It's nice to know blood helps.. I have a double red appointment on Monday

That is no problem. Donating blood is always a good thing, amd I really wish I could do so to pay it forward.

Hope you get better :) You look amazing.

I plan to! Thanks so much! :)

Since the first tumor was removed, what's keeping them from just removing the second one?

I had to go through two years of treatment before removing the first tumor, which was about half the size of the current one. Even then, the surgery was 12 hours.

We can't just remove this one right now because it is right on my vena cava and only remaining kidney. Removing it without treatment would be too dangerous for me at the moment.

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I don't think it's exactly right or wrong, but thank you for that! Also, thank you for your kind words and prayers. I plan to live lots.

Oh no! You asian gurlll. Good luck Julia

Thank you. You don't know whether that's my real name or not.

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I am really not in much pain at all. That is part of what makes the tumor so sneaky. It's hard to say what it's doing without regular scans. Thanks a lot!

My stomach is unusually large. I'm starting to suspect I have the same thing. Do you have trouble breathing ?

If you honestly suspect you have the same thing, you should get to a doctor. If not, you might want to eat some green leafy vegetables.

Just came to thank you for doing this AMA and wish you the best of luck. It's been really hard for me since my uncle died of a brain tumor, so fingers crossed :)

Sorry for your loss. It is definitely not a fun experience for anyone involved. Thank you very much.

Hi there,

hope you get better very soon.

Thanks a bunch. I intend to!

Is it true you have a dermal implant or is the xray tech full of shit?

I am really not sure about that. I believe it is a cyst on my ovary, but the radiologist report was kind of vague.

I'm probably a bit late to this, but couple questions. Are you just incredibly unlucky that it came back or was that always a possibility? And favourite tv shows? I only watch good tv so if you want any recommendations I'm your man!

Also, my favorite shows are Desperate Housewives and Supernatural. What do you reccommend?

Ah ok, can't imagine the feeling when you found it was back. Apart from the fact you like Desperate Housewives you seem pretty cool! The whole of Reddit would recommend Game Of Thrones and i'm not going to disagree! Luther (A British crime programme) is very good as well. And I know you've said the tumour doesn't generally hurt that much but do you have to be careful not to like bump it? Like if a football (soccer ball for you Americans) hit it would it be complete agony?

Hey, I am a young woman and reserve the right to enjoy Desperate Housewives! :)

It doesn't hurt too much to bump it, not that I've tested it that much. However, I can't lie on my stomach on a hard surface or the tumor pushes into my back and hurts a lot. I had to do that yesterday for about 20 minutes without pain meds while I was in position for my nephrostomy. I had to lay like that while the radiologist explained the prcedures he was going to perform. I couldn't wait for him to quit talking and give me some relief. It was pretty painful.

I suppose considering your situation I can forgive Desperate Housewives! And that really doesn't sound like much fun, do you wake up due to it? If you like roll over in your sleep?

Late reply but no, I don't tend to roll over on it. My new problem is that the tumor is flattening my vena cava and aorta. Now, I have trouble doing light activities without getting incredibly exhausted or feeling like I will pass out, but there is essentially no pain.

Never too late! I have been known to have pretty bad luck, but the recurrence rate for this tumor is a bit high at 30%.

What's one average thing that you'd love to do but cant do?

I wish I could wear a bikini, but I don't think I would show my scars and tumor to the public without being able to explain myself.

Who cares what others think?! If you want to wear a bikini then go for it! I gotchyo back gurl ;)

Thanks! My scars have just always been something I am self-conscious about for some reason. I shouldn't be afraid to show them because they represent my character and what I've been through, but I just never liked to share my experience with people unless I really felt like they deserved to know.

Do you/Will you need dialysis?

I don't currently, but that remains to be seen after my procedures today. The stint in my inferior vena cava and nephrostomy are supposed to save my kidney to prevent that.

No question, I hope everything works out for you.

Thanks a ton!

You're beautiful.

Thank you so much. That makes me feel so nice!

I had a Neprhostomy tube for like 8 months due to some ureter issues, they are not very comfortable but they are not the worst. The only thing that would drive me crazy was, all the urine was going through the tube, so for months I didn't pee. I really hope everything works out ok for you.

Ah, sorry you had to have that, but you're right. It isn't the worst thing you can have. I have had things similar to this when I had to drain an abscess on two separate occasions. The fluid drained into a bag that I had to periodically empty. I actually don't mind not having to pee, though I would prefer not to have the nephrostomy, of course. So far so good, though!

Are you single? :P Lol.

Fortunately for me I am not single, and I have a great support system.

And that is unfortunate for everyone else here. xD

Haha sorry! My life is a bit complicated anyway.

So are these cancerous tumors that you are getting?

Also, you are very pretty!

No, desmoid tumors are benign and tend to be slightly less aggressive than cancer since cancer cells can spread quickly without warning. The tumor is "insidious" as one website says, but at least it is a solid mass that is more noticeable as it grows. I would definitely be gone by now if it weren't benign, so I feel lucky!

I don't have a question ATM, but I did just want to say that I think you're incredibly brave for continuing to move forward in your life, and to do this AMA. Keep looking on the bright side, and best of luck to you in the future!

Thank you very much. I really wanted to share my experience this time around, and I hope people can get something out of it.

What was it about the Sulindac that wasn't effective? I live with chronic neurological Lyme disease (which I realize is minor comparatively), but I'm on a pain management protocol which includes constant antiinflammatories because that's primarily how Lyme wreaks havoc on your body (e.g. many of the other issues stem from this).

I'm also curious about an antiinflammatory as a chemo option?

Not trying to hijack your post; I'm just always incredibly curious about treatment protocols!

I am not sure why it hasn't been effective or why anti-inflammatories tend to be better treatments than traditional IV chemotherapy. Fibromatosis/desmoid tumors are odd and respond best to anti-inflammatories like Sulindac or Naproxen and estrogen blockers like tamoxifen.

When I began treatment at 13, sulindac and tamoxifen were the most effective "chemo" and 7-8 years later, there has been no progress due to the rarity of this tumor.

When I see something like this it makes me sad. Very sad indeed, especially because I am kinda depressed (but physically healthy) and not living my life the way I'd wish or dream and especially not enjoying it while someone like you full of positive energy has to struggle with suck an illness. I hope it'll get better and you can enjoy a long and healthy life after you've beaten the shit out of this little bastard!

ps: I just have to say these CT pictures look more like you're a tumor with a human and not a human with a tumor :p

You are just the type of person I want to reach out to. I know how you're feeling. That depressed feeling though things truly aren't that bad in your life. It is all perspective. I really hope you can begin to appreciate all the small things and try to do things you enjoy since you are so lucky to be healthy.

I'm not sure about your circumstances, but that really doesn't matter. Just surround yourself with positive people, have a good attitude,do things that make you happy, and be good to others. It is easier said than done, but it seriously makes all the difference. Whatever issues you may be going through now do not matter at all in the grand scheme of things. Hope my story can help put things in perspective for you. Good luck!

I know its a bit late, but what is your favorite cereal?

I love Frosted Mini Wheats. They have perfect texture when they soak up the milk.

I didn't think you would actually reply, thanks a lot! Mini Wheats are pretty good, I personally enjoy Rice Krispeys. Anyways, Hope you have a life that looks up for you.

I have been a night owl lately, probably from playing League of Legends so much. I'm no celebrity or anything, so I cherish every comment and question I get. Thank you!

All the power to you! Keep on fighting and I hope you become fully cured!

Im in college as well, am graduating next year with a hope to one day go to med school and be an oncologist. I wanted to know from a patient's point of view, what do you think are the most important qualities to being a good oncologist besides knowing the medicine/science well?

What is one thing that you could change for the better about medical care in the States if you could?

Thanks and good luck!

The best oncologists are good listeners and care about their patients' peace of mind. For instance, my oncologist scheduled me a scan for 2 months, changed it to 3 weeks after I asked for one sooner, then after our appointment, he called me from his personal phone and said he moved the CT scan for the following week just because I said I felt a little worse than before. Lucky for me, that scan showed that the tumor was still growing and causing fluid to build up in my kidney.

The worst thing about health care in the U.S is obviously the cost. Everyone has the right to health care and it shouldnt cost $8000 to go to the ER and essentially be neglected if you're not bleeding all over the place.

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Trust your surgeon, but also make sure you are well informed. Ask every question you can think of and make sure you are aware of all possible complications and lifestyle changes you must adhere to during recovery.

Be well nourished before your surgery! Drink a lot of Boost or Ensure along with well balanced meals during the week before surgery. It really does cut down your recovery time and reduces the likelihood of infection.

Have lots of fun before your operation! Do things you know you won't be able to do for awhile during recovery.

Talk to your family and friends to let them know what's going on and let them visit you in the hospital. Visitors (if you actually like them) help keep your spirits up and give you a break from hours upon hours of television-watching. They also bring gifts, which play a key role in the recovery process. :)

Hope that helps! Good luck with your surgery.

Julia?

Who wants 2 kno?

You seriously don't know? Think harder!

Do I talk to you regularly? Did I stop talking to you long ago? Are you my stalker?

Well, Duh! We used to hang out all the time!

I'm still quite unsure.

Don't know if this helps. From here

I'm a 22 year old male working at an IT company.

From here

I used to work at KFC

Apparently attended the University of British Columbia.

Hm, still no idea! Thanks for taking the time to look into that!

Hey are you pregnant?

HI, nope. There is no room for a baby in there!

Can't read AND made an account just to ask that.

It was a friend :)

So, can you....you know....do it?

Well, yes.