I don't even know what to think anymore,can you help me?

By lilsista39 Latest Reply 2013-08-01 12:31:48 -0500
Started 2011-09-08 07:56:27 -0500

I for the longest time use to think I didn't have any friends or family close to me,yesterday I proved my point to myself,my kids and my husband.I had a Dr.Apt. yesterday morning.You all know Iv'e been under the weather lately,well I was't expecting the news I got.
Its called Multiple Nobathian Cervical Blastoma and its malignant and complicated what ever the hell that means.now I have been up and down in and out on the med web sites and cant find a damn thing about this but here I have in black and white from my dr.No I havent told my kids yet or Michael I havent even been to Sleep.I went to bed but not to sleep I just watched him sleep like a baby.I have no idea on how Im going to do this the two people that were my rocks are now gone the only other family I do have for any type of SUPPORT are all of YOU GUYS.I go back to day to the Oncologist I was told I'm stage 3 …and this is what I dont understand how I dont miss an apt I made ajoke Im at the drs and the pharmacy more than im at home they need to move next door to each other so i can move in upstairs.Less travel time and saves me money.And on that note the older ones are moving about and i need to get going my self I will be back on later I promise…I LOVE YOU ALL .I will let you know what theDr.has to say today ok.

34 replies

Grandmama16 2013-08-01 12:31:48 -0500 Report

I'm so sorry. I'm not sure what you will be facing but probably surgery to get rid of it. I agree about finding another answer and treatment center. I can't imagine why they are making you wait so long for another appt. There are support groups too. My prayers are with you.

melota 2011-09-15 08:37:32 -0500 Report

I cannot begin to imagine what you are going through, but I do want you to know that you are in my prayers and thoughts. I ask that you may not only be healed, but for you to have peace and comfort through it all. Please know I am here for you, in my thoughts and prayers.

Betty123 2011-09-11 22:00:33 -0500 Report

First of all, I am so sorry to hear about this. Secondly, I would ask the ones who told you to come back in 7 1/2 weeks, to recommend someone else as you can't wait that long. Living close to the hospitals that I do, Johns Hopkins & Uni of MD, I think I take it for granted everyone has access to institutions like this when in reality they don't. I don'tknow where you're from but maybe there is a teaching hospital you could contact. I would burn up the phone getting another appt someplace else. Even if you have to drive a distance to get there. Call the Am Cancer Society for their help & recommendations. I will keep you in my prayers. If you need a cheerleader for butt kicking, I am here foryou.

Franciann 2011-09-11 21:12:33 -0500 Report

Hi. I am so very sorry to hear of your diagnosis. You sound scared and frustrated and yet you so do NOT want to hurt your loved ones by telling them of it. There are people at the Hospital where your Doctor is that can help you through this. It's all brand new and frightening. You want to know more about it, right? Second opinion a thought on your part? I agree with some of the folks here that suggest the American Cancer Society. They are wonderfully sincere and honest in their approach to each individual who is sick.
I am absolutely new to this site; but your story touched my heart, in that, I can't imagine what you are feeling now. I'll pray for you and yours.
For now, take care. As hard as that sounds right now, stress and pressure doesn't help.
Franciianna/a.k.a., Fran

pixsidust 2011-09-11 17:28:11 -0500 Report

I am praying for you and the doctors in your life. May they be correct, may they be swift and may you be healed completely

Dr Gary
Dr GaryCA 2011-09-11 17:10:07 -0500 Report

Hi liksista,

I am so very sorry to hear that you have received this diagnosis. I know that this news is devastating for you.

From what you wrote, I can see that it is going to be very difficult for you to break his news to your loved ones. This won't be easy. As this diagnosis has turned your life upside down, it will be the same for them. But I suspect that they will want to know so that they can be there for you in any way that they can be.

You might ask your doctor to recommend support groups in your area, or check in with Cancer Care or the American Cancer Society to learn about support resources in your area.

And please stay in touch with your friends here on Diabetic Connect. We are in this together! Keep us posted!

My thoughts and prayers are with you...


Carol2x 2011-09-10 07:19:51 -0500 Report

I'll be thinking of you. Good luck at the doctors. Make sure you ask plenty of questions.
Just one question-did you ever drink diet drinks with Aspartame?
The cancer you have is treatable as Margokittycat said. Check to see if it can be totally cured.

lorene1212 2011-09-09 22:44:41 -0500 Report

Hello Lilsista! May I call you my lilsista as well. Wish I was there to be with you and take care of you and ease your stress and worries. My heart, mind are on you sis, pls pls dont give up! I will miss you… Your very special. I believe God would not put you in my life to take you and I believe there are definitely no coincidences. Ask if you can be put on their emergency list if someone cancels their appt. You can be there when they tell you. Even same day! Call in the morn if you have not done that ok sis. I know you have already gone through so much and so haven't I. God would never put anything in our paths that we could not handle. Trust Him with all your heart honey. I am soooo glad you posted what happened today I really appreciate it sis. Want to know everything and walk through this with you. I my friend am going through it too as well. But so good to be there for someone else. Makes me take my mind off me and put it on my lil sista. HUGS AND KISSES!!!!!

lilsista39 2011-09-09 22:14:34 -0500 Report

Hello to all I have been off and on , i took you all with me to the dr today sorry if i was quiet this is what i was told,from my GYN their are 4 lg. cysts that are growing rapidly and that are oddly shaped. here it goes take your index finger and thumb form an eye thats the normal shape of your ovary ok now take your other hand and form an open ball with both hands thats the size give or take of mine and its by the grace of GOD it hasnt burst yet .Now the complicated part of it is its twisting and forming tumors on my fall.tube.now here I sit because of a waiting game my oncologist cant get me in to the office for a pre op visit for 71/2 weeks Oct.31 at 10am i have been trying all day i even went as far as telling them a fib i know it was wrong but im trying everything i know so i can get in their sooner but no they have nothing sooner than that i go back to my dr on Tuesday for another transvaginal ultrasound ,I know guys TMI im truly sorry for that but hes keeping a very close eye on it so they dont burst.I have looked it up on the net in several places webmd,ive called CTCOA before I was turned away but this was some years back maybe that person was having a very bad day not sure who knows I will give them a call on Monday. If you only knew Michael hes a hard nose marine from the South the most I ever see out of him emotion wise is when he rubs his broad chest and says with his southern drawl dem was sum gud viddles Delis hes built like a damn Sherman Tank .Im trying to stay as positive as possible or as much as i can.I have seen 1st hand how fast this can take a person my best friend had it she was a few months older than i was she was diagnosed in November 23 2005, fought it till she passed that Aug.1 2006. She was my twin girls God Mother.well not to cut this short but my youngest needs me we say our nightly prayers together and i didnt do it lastnight i was too upset i could move . NOW I LAY ME DOWN TO SLEEP I PRAY THE LORD MY SOUL TO KEEP IF I DIE BEFORE I WAKE I PRAY THE LORD MY SOUL TO TAKE MAY ANGELS WATCH ME THROUGH THE NIGHT AND WAKE ME WITH THEIR MORNING LIGHT AMEN GOD BLESS YOU ALL LOVE HUGS AND KISSES

VickieF 2011-09-11 22:07:28 -0500 Report

You know we are all here for you and praying for you too. Micheal would prob. put on his hard nose face for everyone to see, but I sure bet inside he would be praying too. Hard nose does not mean hard hearted. ;) It just means they deal with things in a way to "protect" themselfs from hurts. My prayers go out to you Deloris God Bless.

margokittycat 2011-09-09 15:57:42 -0500 Report


SaraF 2011-09-09 13:31:41 -0500 Report

Hi lilsista39. I am so sorry to hear that you have this diagnosis. My thoughts and prayers are with you. I think you should tell your family what is going on and get their support. Yes, you have our support, but you need theirs too. Have you checked out webmd yet? They might have some information on this disease. Good luck and take care of yourself.

pixsidust 2011-09-09 07:58:02 -0500 Report

My love goes out to you. Across miles and in our thoughts I know many of us wrap our arms around you. I encourage you to be aggressive in your treatment. It can be the insertion of tiny rods with radiation to kill the cells so they do not spread and then removal. Sometimes doctors offer to remove parts in stages but a total removal/hysterectomy presents less risk. You must "say", tell your loved ones and the world. Grieve for your body and the horrible possibilities but rise forth to plan your survival and future. As you hold this secret, letting this burden go to be shared and born by those around you is best. You will find more friends and love than your realized.

This world is not perfect, as God lets all of us to choose our paths right or wrong. I say this because everything is not meant to happen. Often I hear it "everything happens for a reason" presuming its Gods purpose or reason. Its not or the world would be perfect. God does NOT purpose you to have cancer. He loves you more than all here combined. It is to him I pray for your wisdom, to act swiftly, I pray for your courage to move forward quickly in treatment, I pray for your loved ones to be kind and understanding, I pray for your strength to never falter, and I pray for your healing to be complete.
Ask to be healed and move forward to trust God in the process. Take that first step to get through. Across the miles I wrap my arms around you and tell you there is love, much love for you.

robertoj 2011-09-09 06:37:46 -0500 Report

My heart really goes out to you. Whenever something happens to anyone in the community I feel so sad. I understand that you are hesitant to tell your husband but you must do it. I have been told that the problem with sharing this kind of information with us men is that we are usually problem solvers and that sometimes we need to just listen. I wish that when one is given this kind of diagnosis that it be fully explained or at least give us a source to learn about it. It is so much harder when you are left in the dark. I will keep you in my prayers. God bless.

AuntieM234 2011-09-09 00:05:32 -0500 Report

Dear Deloris: Above all else, please keep a positive attitude! Everyone else has said about all that needs said right now, and I second all that. I'm sending love to you, dear. Be sure to post right away after you speak with the Oncologist. ;-) Mara

lorene1212 2011-09-08 23:45:12 -0500 Report

Oh Deloris I am so so sorry sweetie. Wish I was there to give you hugs honey. I send them ok. Michael is your husband right? If so, why you feel like he will not be there for you? You never know. But these feelings are natural and very normal as well. I say I live at hospital also… LOL. Deloris write me tomorrow hon let me know what is going on and stay close to me dear so you know you are not alone okay… This is what we are here for. Please write me and babbbble on forever if you have to okay. lol

100 Acre Woods
100 Acre Woods 2011-09-08 20:46:56 -0500 Report

I am so sorry for what you are going thru. They do have a breast cancer connection group here. They too have recieved shocking news.
One man is dealing with breast cancer. They also
Could be a good support group for you.

lilsista39 2011-09-08 20:21:22 -0500 Report

Thank you all so much im fighting back tears and trying to type softly so i dont disturb the front room the guys are watching their sports Green Bay and New Orleans and of course GB is up14 to 7 make it 21 7 now Im sorry all these guys here its all about sports and my chicken wings the hotter the better they say.But yes again thank you so very much.

jayabee52 2011-09-08 17:00:12 -0500 Report

SOOOOO Very sorry to learn that Delores! If it's not one thing it is two others!

What I looked up for Nobathian Blastoma indicated that it is a cyst. The malignant part of it doesn't sound so good. What Pharmatree posted is some good info, for all I can tell. I pray that they are easily removable with surgery and you have no further complications from it.

Reading all that information about endometriosis and fibroids brought back memories of what my bride Jem told me about her problems with fibroids. Until I read that I really had no idea what she really had been talking about.

Praying you will have little trouble or complications with it.


PharmaTree 2011-09-08 13:37:24 -0500 Report

I am so sorry to hear this, my heart goes out to you. I looked up the diagnosis you provided and you are right, it is hard to find information about Multiple Nobathian Cervical Blastoma. I found that the word Nobathian refers to cysts that grow in the cervix. A great website that discusses Multiple Nobathian cysts is http://www.glowm.com/?p=glowm.cml/section_vie...
Blastoma is a little different, it is often referred to as ovarian cystadenomas, and usually requires surgery. Some good information about Blastoma can be found by clicking this link and going to page 27 of the report. http://www.docstoc.com/docs/74995170/DISEASES...
By combining the two articles and key words Mulitple Nobathian and Blastoma, I think this may be what you were diagnosed with. Even though the cysts are malignant. they are removable with surgery.
I wish you did not have to go through this, but please know we are here for you and that I am sending you as much positive energy possible.
Also, there is a product by New Chapter called, Life Shield. It is a super critical mushroom complex. I used to work at Whole Foods Market, and people would come in and swear by this product for helping with tumors and cancers. Maybe it would be worth a try

realsis77 2011-09-08 12:43:49 -0500 Report

God bless you! I will pray for you! I'm soo sorry! You take your time and when the time is right and you will know it, tell your family. What a terriable thing! I can not even imagine what your going through! I am hear for you if you need a friend.ALWAYS. I can be a good listener and a good shoulder to cry on if you need it. Please remember that. And id like to add the sooner you tell your family the more support they can give you ok! If you want to talk just friend request me and I'll be here for you always ok? God bless! I hope to hear from you soon.

gbc43 2011-09-08 08:49:02 -0500 Report

TELL YOUR OTHER HALF , hold off on the kids .One step at a time and you know we support you but you need to find a group for tne cancer.Your joke is the truth because that's what MOMS do .

Marytea 2011-09-08 08:34:05 -0500 Report

You are in my prayers today and will continue to be. May I suggest you seek a support group somewhere? Your doctor may know of some or get involved at church if you are inclined. You need support with skin too not just on your computer screen. You should find lots of people who care there. As MewElla says stay connected here.

GabbyPA 2011-09-08 08:29:04 -0500 Report

Are they going to explain it more to you? What does all of that mean? I hate it when they dump on you and then let you walk away not knowing a fraction of what your options are.

Here is a site that might help you. http://www.cancercenter.com/cancer-hospitals.cfm
I don't have personal experience with them, but what I have heard is good.
We are praying for you, hang in there and we are here to help any way we can.

MewElla 2011-09-08 07:58:49 -0500 Report

You are not alone…we are here for you, whatever you want or need to say, we will listen, and just love you…You are in my thoughts and prayers, friend…