Possible Ideas

[trish54]

I have just been diagnosed with endometrial and endocervical cancer... I did not see a uterine cancer site available... Does this forum discuss these issues as well as ovarian cancer?
Thanks for your help

[Casey06]

Hi Trish, first of all, sorry about your dx. You are very welcome to post on this forum, because there have been some who do end up with a similar DX, but here is a terrific forum for all gyn cancers:

http://www.hystersisters.com/vb2/forumdisplay.php?f=6

Good luck and I hope you can enjoy your holidays even with your recent dx.

God Bless and Merry Christmas

[trish54]

Thanks, Casey 06... I am trying very hard to enjoy the Holidays... It is the hardest to wait for actual surgery scheduled for the middle of Jan.  After reading many postings, I find I also am trying to decide which pains are just growing older and which ones may be related to the cancer.
That being said, I come from a family of cancer patients and survivors, so am hopeful.
Best to you and yours

[Casey06]

Oh, then you wil be a survivor too! Your attitude is great and will mean everything in your fight.
May God Bless you.
Please keep in touch.

[coogeegirl]

I am a survivor of both endometrial and ovarian cancer I had my hysterectomy in January 2005, if you have any questions that I can help you with please let me know

Merry Christmas

Jenny

[trish54]

Jenny:
  I am very interested in your experience... this is new to me. My mom and several of my family members have had breast cancer.  I am 54 and had gone thru menopause. About 5 weeks ago I started some minor bleeding (just enough to annoy me)  I called and scheduled a pap...got back normal results, but the ob/gyn did a D & C two week ago..Last Friday he had me in for a follow up and told me that the endocervical and endometrial scrapings showed adenocarcinoma. He said he may have gotten it just with the scraping but why take a chance.. I wouldn't need the parts anyway.
(By the way, the pathology report was sent to Mayo and they concurred that it was stage 1.
I have been doing some research and apparently there are grades to stage one  just as in breast cancer).  He will be taking the ovaries and I need to ask about the cervix.  Also I noted that several on this site recommend a gyn/onc. instead of just a gyn.Any questions you can think of that I should ask would also be appreciated.

[coogeegirl]

My endometrial cancer was found in the course of fertility investigations at the end of 2004. I had a radical hysterectomy in January 2005 with at my request they left in one ovary as I was still hoping to perhaps look at the surogacy path and to stop me going into menopause.

My pathlogy from the hysterectomy was excellent the cancer had not penotrated outside the uterine wall there was no signs of cancer in the biopsies that the gyn/onc took from abdomen and no signs of cancer in the lymph nodes that were remved from my pelvis so everyone was happy with the fact that my ovary was left. I was happy that I did not have to have any treatment (chemo or radiation).

18 months later that ovary became cancerous and I was one of the lucky ones where it was found in the early stages, but I was kicking myself for the fact that I had left that ovary in and this time because it was my second bout of cancer and where the ovary was I had to have both chemotherapy and radiation.

I would also recommend that you get referred to a gyn/onc ASAP and get him/her to perform your surgery they are the only ones that can correctly stage your cancer. As with ovarian cancer a correct staging cannot be performed until the pathology comes back from your operation and the gyn/onc has had a chance to have a look inside and take biopsies from the surrounding area.

It would be my recommendation from my own experience that you allow the doctors to take out everything even the cervix you don't want even the slightest chance that anything could reoccur even in the end if the pathology comes back that it was Stage 1 cancer.

Good Luck and I am here if you need me.

Jenny

[trish54]

I appreciate everything you have said... It seems to be the concensus... I have no problem getting everything out... just wondering about lymph drainage if they take them out.. the swelling concerns me as I have seen this in numerous breast cancer people post op.Also, I have looked thru my insurance people and a gyn/onc seems unheard of... could they possibly go under another name?
Thanks Jenny
Pat

[trish54]

Jenny:
  Also concerned about how much time can go by and still safely research the possiblities.

[coogeegirl]

You may not have to have your lymph nodes removed from your pelvic area, that is a call my gyn/onc made once he removed my uterus then cut it open to see the extent of the cancer. I have had no problems with swelling in my legs and that was something that I was really worried about when I heard that my lymph nodes had been removed. You are told simple things to care for your legs post op such as when you get out of the shower always put some moisteriser on stroking it in in an upward motion, make sure that you always dry between your toes and watch for cuts to your legs and make sure you walk as that is great for lymphatic drainage.

I am in Sydney Australia so I am not sure how your insurance works in America but I have never heard a gyc/onc called by any other name but they are definately the one that you want to do your operation, maybe some of the American girls will be able to let you know if they are called anything else over there or your ob/gyc should be able to help you with that one.

I would not be researching this for too long, the only research you really should be doing is looking for the nearest gyc/onc and making an appointment ASAP.

[NY_Princess]

Here is a listing of gyn/onc's in the US I found when researching my doctor.

http://www.ma.iup.edu/~hedonley/sgodocs/SGO_docs_US_A_C.txt

Hope this helps

Hillary

[Casey06]

Here is another link to help you find a gyn onc:
http://www.wcn.org/interior.cfm?diseaseid=13&featureid=4

just enter your zip code

Advice given to me was to find best cancer center close to your home and/or a gyn onc with most experience and many surgeries.
I would not hesitate too long. Maybe 1 week then please get into the doctor.
Good luck.

[trish54]

Thank you all so much for your ideas. (coogee girl, NY_Princess, and Casey06).. I talked with my gyn. yesterday and we are bringing in an gyn/onc that he works with..He didn't feel it was necessary, but seemed very willing to go along with my wishes... I think that is key here... to make the patient feel as comfortable with everything they are doing...Well being of mind is just as important as the body to conquer this.  Also got glowing reviews from a surgical nurse about both doctors so that just made it all the better...
Now, that being said, how do you get past the insomnia... I am trying not to get run down, but after 3 or 4 hours of sleep, I keep waking up.  

[NY_Princess]

Maybe your doctor can prescribe you something, though I don't like to take anything myself. But they offered me anything I wanted to help me with the stress. Or try tylenol pm maybe?? I never have a problem sleeping myself and I don't like to take meds too much, just got pain meds and nausea meds yesterday after months of pain. Hope you are feeling better :) I am only 3 weeks away from my surgery and I am going crazy too...but I just keep reading all this helpful info and have lots of good friends to help out. Good luck with the doctor appt, I'm glad to hear they are bringing in the specialist, we all deserver the best treatment no matter what the diagnosis. I got lucky that my doctor sent me to the gyn/onc when he got suspicious of symptoms, I never would have thought about it.

[trish54]

Sounds like we are going in about the same time... mine is scheduled for the 17th.  I don't usually have a problem sleeping either, unless something is bothering me... Tonight I woke from a sound sleep feeling like I had just been fired for not being available to work.. does anyone else feel scared about the future.??  I carry the insurance for my family and I would be devastated if I lost my job.
I think it was all the discussion about co-pays... etc with the insurance company.

[NY_Princess]

Well, I can tell you, I am terrified that I could have cancer..only because I lost my husband 7 months ago and I am all my boys have. I can deal with whatever happens to me, I just worry the most about them, though I have to say, after my husband passed away with no will and only a small life insurance policy, I was sure to change that and got both done right away.

I don't have your problem sleeping, but sometimes I can't fall asleep at all and have been going to sleep later and later, then wake up really tired. I guess we are all concerned. Though I still don't have a dx yet, I still worry like all of you. Do you have a good support system? That is the best thing to have, I had many family members with other cancers and we were all there for them.

I truly hope you will be ok, since you said it's stage 1 right? From what I'm reading here, that's got a great survival rate so I know it's hard, but try to think positive and spend time doing things you love with family and loved ones. I know that's what I have been doing and it's helping to keep my mind off things (of course until bed time, lol)..Good luck with your surgery.

[coogeegirl]

We all get scared about the future, I know that when I was diagnosed with ovarian cancer I would be waking up at 3.30pm pacing the floor on the internet researching all I could about survival rates and treatment protocols and thinking about my dear husband.

But as NY Princess said do you have a good support system? That can make such a difference, this forum of women is a fantastic way to reach out to people who truly understand what you are going through and with who you don't have to be guarded about your fears with.

Remeber with Uterine Cancer and particularly with stage one diagnosis the survival rates (even though I hate the use of statistics) are excellent, and another reason to think positive is you now have  a gyn/onc assiting with your operation so you know you will be staged and treated correctly.

Good Luck and let us know how you go

[Jan214]

TRISH54: Between the time I found out I had cancer and the actual surgery I didn't sleep a wink.  I was exhausted.  I too, woke many nights and usually the only things that woke me up were worrying about bills on occasion or something going on with my job.  After I thought about it, it made sense that having cancer would be on the list of things that niggles at your mind while you sleep.  (Yes, it is true that they don't like to say you have cancer until they do a biopsy, but with my oncs experience and my situation there just wasn't any doubt going in.)
Please have them take everything out.  Why risk having to go through this again?  I had them take everything and than I got married less than a year later.  I promise it has not interfered with anything that people might tell you it does. (sex)  Honey, we all feel scared about the future, but we try to remember that we still have a future and what we make of the future we do have is mostly up to us.  You are more than welcome on this forum.  Some of the other forums are not very helpful and since some of these diseases are related or overlap there are plenty of people on here who know what you are going through and will be able to offer advice specific to your situation.  The rest of us can offer moral support and info on supplemental meds and numerous other things.  You have a very good gyno that would go along with your wishes even though he did not find it really necessary.  Good for him that his ego did not get in the way as so often happens.  Tell him we ALL appreciate a doc like that.
NY_Princess:  Please reread your last post on the sleeping thing.  It sounds to me like you have a major problem sleeping just not the one that was asked about.  :)  This is never easy to deal with and with your situation it is particularly stressful.  Look at all of the other stuff you have on you!! Most of us weren't big pill fans to start with, but after more than a year of this and a recurrence I finally said what the heck.  I used to only take them when I really really really needed them, but I have grown so tired of being in pain ALL OF THE TIME.  It's like a fly buzzing in your ear; it just won't go away.  If and I hope it never does, but if you get to a time when you are dx with something along these lines, please do whatever you have to do to stay on top of the pain, nausea, sleep and constipation.  
Being brave for your boys is sometimes okay, but if something does come of this, make sure they are not kept in the dark no matter how well intentioned that idea is.  I am sorry I forgot how old your sons are but I think they are pretty young, yes?  If something does come of this if you want and you may not, I will write to you and tell you exactly what it is like from their perspective.  I vividly remember it ALL.  Just remember, they knew your voice before they were born and they knew your face within minutes of being born.  Do you really think that they don't sense all that is swirling around you?
Good luck to both of you and you will be in my thoughts and prayers.
Jan

[trish54]

Well, yesterday I got a call from admitting from the hosp, and they only listed my gyn as the surgeon, so I called the Dr. Office and they said the gyn/onc and my gyn couldn't get hosp. operating times coordinated, so now I am back to square one...It would be possible on Jan. 30, but no guarantees.. I am not feeling warm and fuzzy now... do I wait and take a chance, or do I just go with the gyn on the 17th. (Another sleepness night) as if we don't have enough to worry about.

[NY_Princess]

Wow, that is a hard decision, but if the gyn has the hospital time scheduled, why can't the gyn/onc  be there too? Is it his schedule that is a conflict? If it were me, I would push to have the onc there, especially with your history. But I have not had any experience in this area yet so the other women here would be better to give you that advice. I can only give you support and tell you like everyone tells me to be positive. But I am a pushy person and I would push the specialist. Good luck and I hope you can get this done quicker. I know I wish I didn't have to wait 2 1/2 more weeks either, but I don't have any choice. My mother and sister keep trying to get me to the ER any time I have any ache or pain. I just don't see how that would help and don't want any emergency surgeries done, had one 13 years ago and was in the hospital for 7 days, also abdominal, caused by what else, cyst on right ovary that stupid dr kept. Anyway, please keep us informed and try to sleep, take something to help and I will keep you in my thoughts and prayers...
Hillary
PS..Jan, I sent you a message in the message box, thank you so much for you support...

[coogeegirl]

Sorry I missed your posting but I completely agree with NY Princess you need to push for the gyn/onc to be there at the operation, I know your ob/gyn thought that it was overkill to have the gyn/onc at your operation but lets face it when we have legal problems we want solicitors, when we have babies see ob/gyn and when we have gynealogical cancers we need gyn/oncologists.

Keep pushing and let us know how it goes

[makingpeace]

peace in the new year

[trish54]

NY Princess... I'm not sure what the situation is, except my gyn office said the gyn/onc is on vacation and his office said that he wouldn't even have a chance until the 30th.. My gyn office said they didn't think I should wait that long...Don't have a clue as to how fast this stuff can progress...
coogeegirl:  Maybe I should just dump the gyn and reschedule with the gyn/onc to do the surgery...
if he's available.... thoughts???
I just took the weekend off and went to visit family... don't have much support here , just my DH.
I'm trying to get everything in order so he won't get to stressed.  
Everyone, have a great New Year' sEve and New year...( I just hope it is better than the last two.)
:-)

[hopeshell]

Trish,  I think you should call the gyn/oncs office yourself and tell them how important it is to you to have a gyn/onc do the surgery.  If there are several in the group perhaps one of them would have an opening for you.  You also need to let your gyn office know you really want the gyn/onc there at the surgery.  You may even suggest that perhaps only the gyn/onc could do the surgery.  I was faced with a similar situation due to schedule conflicts and pushed for the gyn/onc by himself.  He even told me he thought I made a wise decision because it can make a difference in your treatment and survival.  They are hesitant to step on each other's toes and just take it over completely but you need to be your own advocate.  If you are afraid of buring bridges, just say something like, "I really appreciate how you referred me to the gyn/onc...I have read and heard how important it is to have complete staging in one surgery...I really need to make this work with his schedule."  It is hard because it just adds more angst to an already hard waiting time.  Good luck and keep us posted.

[Jan214]

I know it is hard to wait and you probably just want to get it out, I know I did, but they have already told you it is cancer and it would almost be criminal not to have the right Dr do it.  It's like your family doctor being able to deliver a baby but an ob/gyn is more prepared for problems, only this is more serious.  On this I agree with everybody that says to be pushy and call the gynonc.  I was able to get in WAY early with my gynonc by calling and asking to be put on a list for cancellations.  They called me back in an hour and said the Dr would see me the next day at 5:30 and 1 week later I had my surgery.  It never hurts to ask; you might get a yes instead of the no you are expecting.
You get the best that you can get for yourself and don't just accept what they give you in terms of their schedules and their choices.
Good luck
Jan

[trish54]

Thanks for your excellent suggestions... I guess that is what I am feeling too.. I have alway been the person that hates to hurt anyone's feelings (or ego), but I guess it's time I start to put my own interests first.  Maybe I should look at this as a growth experience... May you all have a very great new year with the best health possible.. This forum has been wonderful for me and to me.
Thank you to everyone ...

[PF_PVD]

How I feel for you.  I have also had to overcome this idea that I don't want to hurt anyone's feelings which was very hard for me.  I had to work hard to put things into perspective and keep asking myself if my onc's feelings were more important than my life!  This is still not easy for me, but I know it is necessary.  Hoping for the best news possible for you.

[Jan214]

I love my gynonc and am Sooooo lucky to have him, but if I ever thought he wasn't acting in my best interest I would call him on it.  I am going to ask him this week why I am only on Gemzar and not a second agent.  I don't question his choices, but I do want to know why he is making those choices.
You should most definitely put your interests first.  I know that is hard to do.  As women we are the caretakers and we attend to all the little details of everyone elses' lives and put ourselves on the back burner, but when it comes to this the ONLY thing that matters is wha'ts best for you.  If a Dr makes a bad choice for me based on his needs, he still goes on living...I may not.
Do keep us informed.
Jan

[trish54]

I have my friends daughter(surgical nurse)  checking into things for me... Hopefully I can get this resolved soon...I have 3 gyn/onc in my insurance plan.. I tried to get the most recommended one, but will ask the others next week.  Just still not sure how long to delay surgery just to get the doctor.That is my real concern now. I may just have to get the gyn/onc after the surgery.
Tomorrow I go back to work so hopefully I can get my mind elsewhere for a few hours.

[coogeegirl]

Try and get an appointment with a gyn/onc before you make any decisions about your surgery. If you have a choice of 3 on your insurance plan see how you go with all 3. I know I keep emphasisng about the gyn/onc but he/she would be the best one to perform your surgery.

Good Luck with everything and I agree with you work will be a good distraction before your surgery.

[trish54]

I am trying to get the appt with the gyn/onc... it's just that I don't want to much time to pass and let this stuff spread anymore...Best wishes to you in the new year..

[trish54]

Well, they cancelled my surgery and gave me a date for the end of January with the gyn and gyn/onc.  I asked about the lapsed time and now noone seems to mind.  Guess it wasn't a rush after all.  I do feel better about having the extra eyes and knowledge, but waiting another 3 weeks is scary too.  Hope you are all in good spirits.
Will keep you posted on any new developments.