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Drowning In No Woman's Land Drowning In No Woman's Land

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  #1  
Unread 02-14-2002, 12:47 PM
Drowning In No Woman's Land

Hello Everyone
Well feeling kind of down lately. I have been researching my disease. I have joined support groups. I am the human lmp ovarian cancer sponge. What have I found out........ that even the medical community is unsure of this particular kind of ovca. It is frightening, horrifying, anxiety causing. I am in living limbo as far as treatment and information. Just when I think I have a handle on things, and the info I have is current - I get this response from the Johns Hopkins Website posting board leader and rep for the University. They are the leaders of study on my kind of ovca:


Message Text
There is good information on these tumors under the Micropapillary Serous Carcinoma Board at the top of this page. As 30% of these progress you might want to get a second opinion. These tumors also have a predisposition to be hormone positive so HRT controversial. A simple test can be performed on your samples for estrogen and progesterone receptors. If the tests come back positive you might want to reconsider HRT.
For a second opinion on your slides, Dr Kurman at Hopkins is an expert. See site map, for patients and second opinions. it is crucial to make sure you are accurately diagnosed to get the right treatment.. I sent my slides to Hopkins for a 3rd opinion and found out I had the more aggressive borderline called MPSC
End Text


So now what do I do. Just when my onc is telling me to take this hrt. Your prog looks good forever (at surgery), three weeks ago - your prog looks good for 5 years, a week ago we think you have something going on in your colon and maybe your kidneys (swelling up not peeing as much).

Who am I supposed to trust? The absolutely fruitlessness of this situation is sooooooo depressing. I am a puppet - who is pulling the strings?

Thanks for listening. RobinS

I forgot to say, my stage IIIB - I don't have a lot farther to progress or get worse. What more can I do? How much sicker can I get without dying.
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  #2  
Unread 02-14-2002, 01:40 PM
Drowning In No Woman's Land

Robin, I sure wish I was there in person for you. I dont have any knowledge at all of this type of cancer but I know how frightened you must be. Sometimes I think reading on the internet is a bad thing but we all do it. As to who do you believe ....... I am not sure of this answer anymore. I think you just have to follow your gut feeling and if you think there is a need for a second /third opinion well go for it, nothing will be lost. I think with all cancers the Drs are dealing with the unknown as each cancer and patient is different and has to be treated individually. AND I have to say that thinking positively is a very important thing to try and do and miracles do happen. God bless and much love always x x

This post is rambling I know but I speak from the heart
  #3  
Unread 02-14-2002, 01:47 PM
Drowning In No Woman's Land

Oh ((((Robin)))) Sweetie!!!

I am so sorry you are feeling so down, and they do seem to have you in a state of limbo. You are certainly entitled to all the feelings you stated. Its very hard when there is so much varying information, and its understandable you are unsure who to believe.

Has your oncologist that you are seeing seen this information? And if so does he still feel the HRT is ok? It really sounds like there is varying info on this strain of ovca and no wonder you are feeling anxious and down. There has to be some concrete info on this as far as treatment somewhere don't you think? You are very pro-active and involved in your research, and if there is concrete info, I have no doubt you will find it my dear. You are very knowledgeable in this diease, and you know where to look for good information.

Now what are they doing regarding your colon and kidneys? Have they done testing or at least scheduled you for testing to see whats going on there?

Gosh Robin, it seems I am not very helpful and my whole post is a bunch of questions, but please know we are here for you, in any way we can be. I am praying very hard you will get some information that will set forward a route of treatment for you with this.
Much love and big hugs to you!!
M. xoxo
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  #4  
Unread 02-14-2002, 07:04 PM
Drowning In No Woman's Land

Dearest Robin,

I am so sorry that you are going through all this. I am sending out to you my biggest hugs. I will be lighting a special candle for you on Sunday.
Stay Strong, Robin.......Stay Strong!!!!
Know that there are alot of prayers out there for you.
Valentina
  #5  
Unread 02-14-2002, 07:11 PM
Drowning In No Woman's Land

DEAR ROBIN,

I DON'T KNOW ANYTHING ABOUT THIS TYPE OF CANCER.

I CAN ONLY OFFER YOU SINCERE PRAYERS AND GOOD
LUCK.
I MUST AGREE WITH THE OTHERS, YOU SHOULD GET EVEN
A THIRD OPINION.

SCARED , IS NOT THE WORD YOU ARE GOING THROUGH,
I SINCERLY PROMISE TO PRAY FOR A REMISSION FOR YOU.

PLEASE TRY AND THINK POSITIVE. GOD WILL HELP.
JUST ASK HIM.
  #6  
Unread 02-14-2002, 07:49 PM
Drowning In No Woman's Land

s to you Robin
In my humble opinion, it sounds as though you definitely need another gyn
oncology opinion. When in any doubt, go for it!!! You've nothing to lose and
peace of mind to gain. I don't know where you live, but look for a certified
cancer center. These are scattered all over the east coast and I think one
web site lists them.
oxoxoxokarenann ovcaIIIc
  #7  
Unread 02-14-2002, 10:20 PM
Drowning In No Woman's Land

{{Robin}} sweetie!

I can certainly understand your frustration and anxiety with so much unknown territory.

I know you are doing alot of research into everything you can so, kudos to you!! Its so important I believe to be proactive and learn as much as possible. I was also wondering if you have a cancer clinic near you as Karen mentioned?

I'm thinking if you aren't comfortable with taking the HRT, please do get another opinion, it never hurts to get and I would certainly tell your Dr of your reservations regarding taking it.

Can you have your slides sent to this Dr that was mentioned? If so, if he is a specialist in this type of cancer, I would see if this is possible. At the very least it may give you some more specific answers to your questions and may be exactly the kind of data your own physician needs to further treat you.

I hope that the problems with the colon and kidneys turn out to be nothing to worry about. And, I most certainly hope you find out whats happening sooner than later.

Please keep us posted hon on how you are doing. Remember, regardless of this diagnosis, this CAN BE and IS being beat more and more every day. Try to stay strong and positive and if you need to talk or vent, please remember we're always here for you.

{{hugs}}

Vicki
  #8  
Unread 02-15-2002, 04:40 AM
2nd opinion

Robin,
I am not familiar with your type of cancer. But I do have cancer. This is what I did. Got to the Bloch cancer site. I think it's www.blochcancer.org. ask for their free book. Use the information on the site to find a top gyn/onc center near you. Then call that center and make an appointment for a 2nd opinion. IT's your body. My oncologist says the first time you fight cancer is your biggest and best chance.
I made the appointment for a 2nd opinion. Even though I probably won't switch Drs. It will be something to talk to my oncologist about if the other Dr has something else to say. She (the 2nd opinion one) is a 3 hr drive from here at a top rated cancer center. Me reg onc had no problem with me doing this. He said people do it all the time and you really should.
So it may take a week or so....but be pushy. This is you. This is the most important thing you've ever ever done. This was difficult. I had to be pushy about it. I had to make several phone calls. But I have my appointment. My cancer is very rare. There really is no consensus on how to treat it. I feel any and all information is important.
Also--to tell you--mine is estrogen and progesterone fed. I was so frightened that I would become a hormonal maniac. I'm ok. Some small problems that I'm "watching" but nothing wildly out of control. You can go without hormones. There are some things to do.
But please Robin--get that second opinion. If your cancer is hormonal fed--then your life depends on it.
Susan L
  #9  
Unread 02-15-2002, 02:52 PM
Drowning In No Woman's Land

{{{Robin}}}

I can't add anything but and . I will keep you in my thoughts.
  #10  
Unread 02-15-2002, 03:32 PM
Drowning In No Woman's Land

Hi Robin--

I just wanted to let you know that I can really relate to your feelings. Some of the best advice in regards to the internet was from one of my doctors -- he told me not to believe everything I read on the internet and if possible, to stay away from the negative sites. He said that a lot of things on the internet are just not true and a lot of MDs like to put stuff out there just because "they have an axe to grind and like the recognition". Also, a lot of it is outdated -- modern medicine is moving along so fast, that what you read today may not be true tomorrow. I know it's hard, but just try to take one day at a time. The Lord doesn't want us to be anxious about tomorrow. He just gives us the strength to get through each day. That really helps me a lot.

You will be in my prayers,

Love,

Cyndy
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