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Old 11-12-2008, 06:43 PM   #1
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kt8889 HB User
Adenomas/FNHs/Hemangiomas (x14)

Ladies, can you believe we have closed another thread?! To anyone new reading this we are a bunch of women from all over the world that have had to deal with liver tumors. Most of us have had surgery, but not all. We are glad to answer any questions you might have and help to direct you in the right direction for getting the help you need. Please ask us anything, that is why we are still on here.
To all of my lovely friends, hugs to you! So glad we keep in touch, even if it is through here.

Katie

 
Old 11-16-2008, 09:21 AM   #2
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kathryn38 HB User
Re: Adenomas/FNHs/Hemangiomas (x14)

Hi everyone,
I am thinking about surgery again and realized that it makes you feel absolutely vulnerable, no wonder it is so scary. Also it makes me have mixed feelings...I am going to miss thanksgiving with my family....but I don't have to cook! Yeah!
I am going to miss some work-will my coworkers finally appreciate me? nah.
I realize I have been married a long time if I asked about when I can bowl again before when I can have sex again-actually I may use it as an excuse for awhile!

Kathryn

 
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Old 11-16-2008, 10:23 AM   #3
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kt8889 HB User
Re: Adenomas/FNHs/Hemangiomas (x14)

Kathryn, Bless your heart. Second guessing is normal, we all went through it. Your holiday season will be a little slower this year, but that is ok. It is good for the soul to slow down a bit. Your work people will miss you and your hubby will be glad when you are feeling better.
Hang in there, you are in our prayers,
Katie

 
Old 11-16-2008, 02:16 PM   #4
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cailea HB User
Re: Adenomas/FNHs/Hemangiomas (x14)

Hey all...yeahhhhhhhh for x14!!!! and the right person started it!

I am afraid today I have a question and a blunt one at that!

What do I do regarding contraception????????

My docs are being so vague about the risks of hormonal contraceptives, but there are limited other choices, IUD for someone with no kids is not pleasant! etc and condoms, sheeeesh who thought at 33 I would be back to that.

Any information or advice you have been given would help so I can take them back to my doc and get some decent answers.

As we have made the decision not to have kids for the forseeable future something is going to have give!

A very frustrated cailea....lol

*huggs and love you all*

x

 
Old 11-16-2008, 04:22 PM   #5
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Re: Adenomas/FNHs/Hemangiomas (x14)

Cailea, we are currently still using condoms. Not always fun, but we are also trying to figure out what to do in the future. We know we do not want to have kids ever. I am only 38yrs. old, but I had my kids so young, my baby is 15. Let's just say, it is time to take care of me.
My surgeon said if I want to take the mini pill I can, but I have to come in for scans every 6 months. Sound like I will be just waiting for the next surgery if I go that route.

Hugs to you all!

Katie

 
Old 11-16-2008, 09:52 PM   #6
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millienillie HB User
Re: Adenomas/FNHs/Hemangiomas (x14)

I was reading the posts and i noticed the question about birth control came up- I was going to have a tubal ligation, but after my gallbladder surgery my husband volunteered to have a vasectomy- he told me he didnt want to see me in any more pain. That just melted my heart! He had the procedure done in the dr's office and it took maybe 20 minutes. He was a little sore (ok he was a big baby the first night! lol) but he was fine after a couple of days.

I was diagnosed with 5-6 adenomas in July after CT scans, a MRI and a biopsy. I was referred to liver surgeon/specialist at the UW by my surgeon who did my gallbladder surgery. I was told that two of the adenomas are about 6 cm and the others about 1-2cm. I was also told the larger ones are closer to the surface of my liver so if they had to be removed it is easier than if they were deep within my liver. Has anyone heard this?

The thought of surgery scares me- I know the specialist is one of the best but I can't help worry, with all the stories you hear on tv or read in the newspaper about surgeries that went wrong.

I go for another MRI tomorrow morning- then meet with the specialist the first week in December. I really hope there has been some reduction in size in these 4 months!

What I am really finding aggravating and I guess you could say hurtful is the way people I work with act like I am exagerrating (spelling?) the seriousness of these tumors. Has anyone else had this happen, or is it I just work with a bunch of insensitive people? I don't like having to schedule appointments and miss work- it is almost like they think I am making this all up! Don't I wish! Before i knew what exactly was "wrong" with my liver it was the worst waiting game! There was talk of cancer- the scariest thing to be told- especially when you have a young child at home not knowing why mommy has to keep going to the doctor. (my daughtewr is 10). My husband was a wreck- his brother passed away from liver failure due to cancer- and my mom just passed away 2 years ago. Sorry- now I am rambling- it just feels good to express my frustration regarding this whole situation!

The thing that really makes me mad with this whole thing is NOT ONE doctor ever tells you about this risk while taking birth control pills! I was taking the 3 month pill and stopped after I (not the doctor) looked at the teeny tiny folded up side effects paper that comes with the package from the manufacturer and saw that these liver tumors were a rare side effect! Then to add insult to injury my doctor just gave me a different pill without even looking into it. My gallbladder surgeon did the research for me and told me I shouldn't ever take them again.

Well that venting felt good! Thanks for listening!

Last question- how long do you usually wait before the decision for surgery is made? I read that these adenomas can turn into cancer if left untreated- is this true?

Thanks!

 
Old 11-17-2008, 12:58 AM   #7
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Re: Adenomas/FNHs/Hemangiomas (x14)

Hi Millie
The thought of surgery scares me too,otherwise I would not be up in the wee hours of the morning reading about livers. I worry too that something could go wrong, but I have weighed the pros and cons of the do or no not and I decided on taking my chances on the do. I am 38 also, and worry, what if I go another 12 years, how much bigger will they be then? Maybe the docs could suggest something for anxiety.

My co workers have been pretty cool with me. I dazzled them with lingo. Maybe most people recognize the big c word-cancer and chirrosis, and well these little tumors are probably unknown to most people. If it all helps, worry about your health first, and do not worry about their opinion. Maybe spend some time educating your boss, mine has asked alot of questions: mainly -when will you be back?

My primary didn't mention pills either, i bet a specialist would have though. the most frustrating thing is that my primary did not acknowledge any abdominal firmness after I had asked him about the firmness. to me it screams "go to a specialist!!!!!) Maybe you need to request that your results tomorrow get sent to a specialist and schedule an appointment to talk. I was surprised, the radiologist who read my catscan report remarked on the probability of a follow up surgical procedure. My cat scan results were sent to a liver surgeon and they called me with a tenatative surgery date, so I guess he looked at the report and decided on surgery then.

Let us know how your scan turns out and I want you to know that you are not alone.

Kathryn

 
Old 11-17-2008, 01:05 AM   #8
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Re: Adenomas/FNHs/Hemangiomas (x14)

I'm going shopping on monday for post surgery nightgowns to wear at the hospital, will it be easy to pull things on over my head or should i strictly stick with the snap front type of gown?

thanks,
kathryn

 
Old 11-17-2008, 02:20 AM   #9
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cailea HB User
Re: Adenomas/FNHs/Hemangiomas (x14)

Hey all,


millienillie - they made the decision about my surgery pretty quickly, when the tumour ruptured and I ended up in hospital it was found to be about 10cm (this was the first I knew of it). About 3 weeks later it was taken out. The theory being at that size, having already ruptured and the possibility of change (and not knowing what it was for sure) it was better out than in.


kathryn - over the head is ok, its just the fact that you have to keep pulling the darn thing up for everyone to look that is the pain ;-) Just make sure it is soft and comfy.

love
cailea
x

 
Old 11-17-2008, 06:27 AM   #10
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Re: Adenomas/FNHs/Hemangiomas (x14)

kathryn, over the head can be hard with all your IVs. It is best to have snap up. I only wore the hospital gown and put on my pj bottoms when they took out my catheter. You will have one if you are in for open surgery. We all over packed when we went in for surgery.
Millie, yes, you will need to get with a speciallist, glad you are going. Sounds like you will be setting your surgery date soon. Adenomas can rupture and/or turn malignant. Not overnight, but if left alone, there is a 10-15% chance or that. These were olds that I was not willing to gamble with. My doctor was the dirctor of the liver transplant unit at University of Cincinnati and he recomends taking Adenomas out, no matter what the size. There are 3-4 women on here that have had a rupture and it is very scary. You are doing the right thing.
I keep hearing that we are 4 out a 100 million that get liver tumors due to birth control. I think that number is low. Birth control pills have only been around for 30-40 years, so it is time to take another look at what they are doing to our bodies. We have all written Oprah, trying to get her to do a show on it. I hope some day we will contact us. Glad you are venting with us. We all understand what you are going through and that you have a million questions going through your head right now. We might not have all the answers, but we do understand the frustration and we are here for you.
Kathryn, if you have any other surgery/hospital questions, we will be glad to help.
Cailea, so glad to see you around! Nessie, as always, you are loved and I am praying for you! Tina, hugs to you! Arlyn, how you feeling little mama? Neens, hugs to you too! Juliet, if you read on here, we think of you often. Linda, how are you hun? Give us a shout when you have time! Beth, you too.

Katie

 
Old 11-17-2008, 09:11 PM   #11
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kathryn38 HB User
Re: Adenomas/FNHs/Hemangiomas (x14)

Hi millienillie,
how did your scan go today? Did you find out anything from it yet?
Kathryn

 
Old 11-18-2008, 10:40 AM   #12
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Re: Adenomas/FNHs/Hemangiomas (x14)

Hi Ladies!

I've been thinking about you all lately. It looks like some new ladies have joined the discussions...welcome! I know that it's frustrating and scary, but everyone on this board is so supportive. There have been some days that I have cried out of gratitude for having you in my life. I wish there was a way to meet each other in person. Hello Oprah???

For those of you who are angry about not knowing that these are caused by oral contraceptives, we all went through that, but understand that you are unique! I work in pharmaceutical sales and used to sell oral contraceptives. Part of my training included study of the disease state or indications for the medication, how the medication works, and side effects. As far as side effects with OC's, the main focus is heart disease, dvt's, and smoking (you shouldn't smoke if you're taking OC's). There was never any discussion of the liver at all. Sometimes the advancement of medicine brings out more side effects than a person would normally experience, but that's only my opinion. Life is all about balance!

For those of you looking for a different birth control option, I was told that there is no way I can ever take any hormones again. (If you read my history on this site, you will see that I still have my hepatic adenomas in me. No surgery...yet!) So now my options are limited. I have been using a diaphragm and condoms, and had been thinking about having the copper iud put in, but since Dave and I are not seeing each other romantically anymore, I am going to wait on the iud. That's the life of a single girl...happy one day, broken-hearted the next! Enough boo hoo for me. Dave is a wonderful person and is trying to figure out what he wants for himself, so it's better for me to find someone who is ready for a relationship with one person. I'm a great catch, so if you know of any available guys out in California (Santa Cruz), send them my way! They can easily find me on one of those websites where single people get matched up with each other, especially if they want a beachygal in their life. Is that a word? Anyway, as far as birth control options, there aren't as many non-hormonal, non-procedure, non-abstinence choices available.

In the meantime, hang in there everyone and don't let these things keep you from enjoying life!

Linda

Last edited by LindaG40; 11-18-2008 at 10:44 AM.

 
Old 11-18-2008, 02:49 PM   #13
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kt8889 HB User
Re: Adenomas/FNHs/Hemangiomas (x14)

Hi Linda! It is so great to hear from you! How are things going with waiting? Please remind me what happened with your scans.
I know you are bummed about Dave. You keep your head high and keep smiling. You will find someone. I am glad you jumped back in with both feet. It is good for the soul. Have you been dating anyone else? I know what you mean about the birth control thing. I have been in touch with a lot of friends from high school lately through sites and I have friends that are just now having oops babies at 38. I don't know if I could handle that right now!
Please keep in touch more often, we have missed you!
Hugs,
Katie

 
Old 11-18-2008, 07:36 PM   #14
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cailea HB User
Re: Adenomas/FNHs/Hemangiomas (x14)

Thanks ladies for the birth control advice, it was about what I expected. No real answer...lol

I am just so frustrated that as well as this hell we have all been through, i am now 33 and will never have "spontaneous" sex ever again.

I know I should be grateful I have my health and was one of the lucky ones, but it is the aftermath and trying to put life back to together again and back to normal then more problems hit.

Seems I am going to have to stay celibate...LOL

*huggs*
cailea
x

 
Old 11-18-2008, 07:47 PM   #15
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millienillie HB User
Re: Adenomas/FNHs/Hemangiomas (x14)

i got the results today... Nothing has changed. No reduction in size- not the results i was looking for, but at least they didn't get bigger! I talked to the patient coordinator today at the University of Washington. She was telling me that the dr. made notes in my file and if there was no change in the larger adenomas, at my appointment we would discuss the next step. I am assuming that would be surgery. So we'll see what happens on Dec. 2.

Hope everyone is doing well!

 
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