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Pre-diagnosis confusion...seeking answers

christyny631
Posts: 24
Joined: Apr 2009

Hello everyone. I have had a very hard time finding someone who understands what I am going through...maybe I can find someone here (I have tried cervical cancer forums and only got answers to the cervical portion).

I'm 32 years old. I originally went in to doc presenting with pelvic pain that worsened with menstruation, sciatic pain down to ankles, extremely heavy bleeding, and fatigue. The heavy bleeding has been going on for 3 years (what I thought was a result from tubes being tied), the pain for over a year. I had an endometrial biopsy done, ultrasounds, bloodwork, pap-all came back clear, no hpv-no cancer. I told doc I wanted to rule out endometriosis, so he decided to do 4 procedures (laparascopy, hysterescopy, D & C, and thermal ablation)to treat and rule out endo. Doc said I "had a lot going on in there" after the surgery, that I had numerous adhesions & there was no endo, and that he wanted to see me in a week. He went on vacation after that. The fill in gave me my pathology results. The D & C curettings showed squamous epithelium of the cervix & endometrium, both with severe dysplasia, with endocervical gland involvement. They told me I had pre-cancer and needed a cone biopsy done to see if it had invaded the deeper tissue. I went home and cried. Fast forward a week, and I still dont have the cone booked. I call them, and the nurse practicioner takes out the pathology report. I ask her if the gland involvement means its in the mucous producing glands, or in the deeper tissue, she says both. I ask her how they will test to see if its in the myometrium like they are deeper in the cervix. She then says she thinks I should skip the cone, and go straight for hysterectomy, and is going to in fact PUSH for it.

I still dont know what "a lot going on in there means" because my doc is now out on family emergency leave for another 2 weeks. I have been researching and did not know that some of the advanced staged disease symptoms were some I have been displaying: hair falling out, 15 lbs lost in a month and a half without trying, shortness of breath upon energy exertion(which I thought was anemia, but I'm not anemic per bloodwork), all coupled with the pain & heavy bleeding has me already accepting the fact that I'm going to hear "You have cancer". The doc doesnt even know about the other symptoms because I didnt know they were related. That and the fact it is ALL over my uterus has me convinced the outcome is not going to be good. That and I waited so long to address the issues.

I dont know if it started in my uterus, or if it started in my cervix (no hpv). I read that you are supposed to have columnar glandular cells on your endometrium, and I have squamous epithelium in there. That seems like a complete cell change to me if I'm understanding it correctly. I cant find anything on the net about dysplasia of the endometrium(I have a copy of the pathology report).Does anyone know anything about this? What I also want to know is has anyone heard something similar before being told they have uterine cancer? I dont doubt for one second they are going to tell me its bad, so please be frank with me. No one will give me an answer to this and the silence when I ask is deafening. I feel so alone. This is my 3rd attempt in uterine forums, with not a single reply. I need to know how hard to push these doctors in treating me. I also am curious what kind of cancer it could be with these findings.

In closing, I have an appt. on May 8th with my gyn and another one on the 14th with a gyn/onc (by my choice). I could really use some insight from people with a story like mine. I am a single mother of 3 children, 10, 7, & a 4 year old with autism, and no help but from my mother. Any replies will be appreciated with a magnitude that cannot be put into words. Thank you.

Christy

Ro10's picture
Ro10
Posts: 1395
Joined: Jan 2009

Don't really have any answers as to what all is going on with you. You have so much going on right now, I really feel for you. I hope you get some answers to your many concerns soon. Waiting for answers can be so frustrating and definitely adds to the stress level. I will add you to my prayer list and hope you do not hear those dreaded words "you have cancer". Wishing you peace and comfort.

california_artist
Posts: 850
Joined: Jan 2009

I simply cannot begin to say how overwhelming your situations seems most likely to all of us at this board. But, none of us are doctors, so we can't really answer most of your questions. However, I would have a few simple suggestions to answer some of the questions your doctor didn't because of his own personal emergency:
1. Go either to your doctor's office of the medical records office if the test were done at a hospital and fill in a release of information form. I have gotten all of my labs, operating room records, PET/CT cd's and labs.On the light side, it's oodles of fun to use the wheel on your mouse to see your insides thighs to brain. I have found if you call prior to showing up and say what it is you would like, they will have everything ready for you once you get there. I have found this to be hugely helpful in preparing my questions for the doctor when I see him after tests, as often he has not even looked at my file prior to my entering the office for my talk with him. One time we were talking about my lymph nodes, which weren't removed, oh joy, and he was referring to one, when I had pre read the report and realised that there were two lymph nodes in questions, makes a girl worry.
2. I would go online and gather information regarding an alkaline diet. Read about it and find lists of the foods that are most alkaline. Cancer does not thrive in an alkaline environment. But loves acidic foods. And oddly enough, lemons are, after they are processed by the body exceedingly alkaline.
3. Stay away from: sugar; coffee; all teas but green which is alkaline; particularly red meats which have hormones; exercise, the reason for the exercise is that it increases oxygen in cells; also eat lots of veggies for the same oxygenating reasons.

There are other things, but it's late here and I don't want to misspeak.
My name is Claudia, my email is claudiaallen27@yahoo.com, phone 947-517-9417. With all of the trouble you are having I would not mind if you called tomorrow, or some other day when you may be feeling better. I live on the Michigan/Wisconsin border and can't even remember how to spell Wisconsin right now. Try your very hardest not to panic. It may not be cancer.
Love and hope to you,
Claudia

christyny631
Posts: 24
Joined: Apr 2009

Thank you so much for answering, & for your prayers as well! I know I'm asking a lot. I have not come across a single person yet who has been diagnosed with dysplasia of the endometrium, nor can I find any info and its maddening!

I think the advice given is wise, I will certainly get copies of my medical records...I have some but not all of my recent testing results. The one thing I can say is my lungs are clear, and I had a cat of the head after surgery due to a migraine they thought may have been a blood clot...which in turn was also clear. I knew sugar was bad for cancer, but I didnt know coffee was bad. I drink an 8 cup pot a day, so I will certainly start cutting that down. I hardly have an appetite, but have been proactive in changing my diet to a healthier one.

It is quite unsettling that the dysplasia is so widespread, even more so that they want to skip the "protocol" cone & head for hysterectomy. I have no problem with the hysto, the sooner they take it out the better in my eyes. This has just been so difficult because my doc has been unavailable. He's the only one who can answer my questions because he did my surgery. I dont know if he found lesions, polyps, or what that he chose to biopsy.

I do hope to god its not cancer. Regardless, it is what it is....I just hope if it is, they caught it early. Again, thank you so much for your replies. I dont feel so alone anymore. :)

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm sorry about what you are going through. This whole journey is very scary. I have uterine (endometrial) cancer - uterine papillary serous carcinoma.

I agree about getting your records and it sounds like you are pretty educated already which is more than I could say about myself 8 months ago.

I strongly recommend that you work with a gyn/onc - they are the specialists. It's good that you already have an appointment.

Hang in there and don't let your mind take you down that doom and gloom path right now. Stay positive - couple your treatment with visualization exercises (get the book Getting Well Again by Simonton and follow the exercises in there in chapter 11) - this made a huge impact on me and I believe it is helping me every day in taking control over my illness and focusing on wellness.

My prayers and hugs go out to you. Mary Ann

christyny631
Posts: 24
Joined: Apr 2009

Thanks Mary Ann! I am honestly in a good state of mind right now for my predicament. My stepfather has proven to be an invaluable source of strength, just diagnosed with prostate cancer himself. He reminded me "it is what it is", and I need to fight, or I may as well throw in the towel now. The fear & worry was all consuming up until that conversation, paralyzing if you will... but I've come to some terms of acceptance. Now I just want to be knowledgeable about what I'm dealing with, and proactive where I can. The waiting is certainly frustrating, and as I'm reading on the net, I'm realizing there will be a lot of it. For now, I've stuck my nose in a good book, and am doing things with my children to try to keep my mind off of things. I refuse to let this get the best of me!! Cancer or no cancer. :)

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

You sound wonderful!! I give you lots of credit - I think you have the attitude that will bring you through this. You know, I've done alot of soul searching on this journey and I am trying to find the positive in all this. I'm definitely learning the value and virtue of patience, fighting when I need to (even my own depression), taking time for myself, the value of good friends, let go of resentments, and that I am worth receiving wonderful things.

Hang in there. We will get through this. Your stepfather is right. Stay strong and don't wave that white flag too soon.

Peace and blessings to you. Mary Ann

Ro10's picture
Ro10
Posts: 1395
Joined: Jan 2009

Mary Ann this journey does help you put things into perspective. Sounds like you are finding the positive in things. Keep up the good work. May you too have peace and blessings.

christyny631
Posts: 24
Joined: Apr 2009

Mary Ann,

You sound wonderful too! Like a strong, sensible woman, who has her eyes wide open. Your journey has not been for nothing, you've accomplished much in your soul searching in my humble opinion! :)

I couldnt help but find personal meaning in a movie I watched last night. It was "The Day the Earth Stood Still". It was stated in the movie that "We only change when we are on the brink of destruction." In essence, the threat of non-existence makes people realize they need to change the way they live. How true I am finding that correlates to my own life! I have been fortunate to have been enlightened to some of the same things you have. I believe without the cataclysm of illness, I would've never had the soul changing series of events that ensued. I was shaken to the core, and the stir was a good one because I have re-evaluated my life as a whole on multiple levels, and re-prioritized everything.

The journey has only just begun for me, regardless whether I'll be fighting cancer, or tackling it before it turns into cancer, its still a journey. I'm sure more "enlightenment" will accompany it. That is the good that is to come out of it for me... spiritual progress in the grander scheme of things. So, I will continue to prepare for the worst, hope for the best, and pray inbetween. :)

I have to say the strength, courage, & kindness emanating from you ladies is truly amazing! It has been wonderful to hear your voices, read your progress, and watch you empower each other when things get rough. I feel truly blessed to have found this site. ;)

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Christy, you are way ahead of me at this point of "the journey". You will make it - stay grounded like you are. Again, the book Getting Well Again helped me to figure out some roadblocks I used to have and start working through them.

Ro, thanks for your kind words. Best wishes with your continuing treatments. I'm still waiting for the PET - I think the approval may come soon.

I agree that the women here are awesome and help give each other strength and HOPE and encouragement. There's great karma here.

Stay strong sisters,

Mary Ann

christyny631
Posts: 24
Joined: Apr 2009

I wouldnt say I'm ahead of you. I'd call it "alright for the moment". ;)

I'm having pain in my glands in my neck today, although I have no signs of cold or flu. Of course, it trails across my mind that its cancer. Sounds ridiculous I know, but trust me I battle myself daily to maintain my composure. I just have to keep reminding myself "it is what it is" in order not to lose it!

I love to read. I will definitely have to look into Getting Well Again. It may be a good pre-emptive measure. Friday is my appointment with my ob/gyn. Finally, some answers. It's been over a month since I had surgery & was told I have pre-cancer. Now I'll get to hear all the gory details of my surgery.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

The mind can drive us CRAZY. I remember one particularly bad day when a good friend of mine listened, coached, and then suggested I needed a "distraction". That was the best thing - we took a hike at a nature center (I live in SW Florida - originally from upstate NY - are you from NY?). It was such a good thing to get out of the house and out of my head!!

Great that you will see your doc on Friday. We recommend that you get your surgery, if at all possible, from a gyn/oncologist.

Take care. Mary Ann

christyny631
Posts: 24
Joined: Apr 2009

Yes, the mind is an almighty powerful thing lol.

I find nature helps also. I am indeed from NY, and in fact am also originally from upstate myself (now on Long Island). I was born in Walton, but lived in Roscoe. It's a tiny town in the Catskills, have you heard of it?

I will update on Friday. I have the appt. with the gyn/onc on the 14th of May. He is board certified & is supposed to be one of the best gyn/onc.'s in the NY metro area. He's a professor at the university hospital he is affiliated with. Thankfully I learned to check credentials with my autistic son, so I've done my homework. ;) He is definitely going to be the one to do any further procedures!

I called Memorial Sloan-Kettering Cancer Hosp., they said they would take me, but to get the cone biopsy done first. I dont understand why everyone is so insistant on me getting 2 surgical procedures! I read that hysterectomy is the only way to determine if there is myometrial invasion. Do you know if that is true? It just makes no sense to me to have a cone biopsy done if they have to remove it all anyway to figure out whats going on in the uterus.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was VERY frustrated with the many small biopsies and tests they did before they finally did my hysterectomy, but I was told that if there is a chance a less invasive test can shed some light on the diagnosis, these steps have to be taken first. I was especially frustrated that, once I was referred from the gynecologist to the gynecologic oncologist, he felt compelled to do his OWN biopsies (NO one wants to have TWO endomitrial biopsies without anesthetic! OUCH!); the same ones I'd already had. But they want those references to help point the way as to what they should be on the lookout for. I wish they would have jumped right to the D&C for me, since all of those other little snips were 'non-diagnostic' or 'insignificant' or clean, and none before the D&C confirmed or ruled out cancer. I think a part of it is also insurance protocols. An invasive procedure has to be deemed necessary in order for your insurance to cover it, and I think those biopsies are an attempt to document the need for the procedure. That's just a hunch; I don't know that for a fact.

christyny631
Posts: 24
Joined: Apr 2009

Hello & thanks for taking the time to write Linda. :)

These procedures so far have ALL seemed invasive lol. ;) That endometrial biopsy was awful!! Ouch is right. I'm sorry you had to go through so much! ((Hugs)) Thanks for alerting me that I may be in for more...I'm definitely taking a ton of advil & something for my nerves before I go to the gyn/onc office!

What you said makes perfect sense. I hadnt quite considered the insurance aspect of it.

I'm hoping they move to hysterectomy. I have severe adhesions & a prolapsed uterus and cervix on top of the widespread dysplasia...things that will continue to plague me in addition to the possibility of cancer. :/

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