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Diagnosed on 9/28/11 been having a hard time dealing with it all. Need some advice or help, thank you.

tina4479
Posts: 5
Joined: Dec 2011

Hello,
My name is Christina. My story is long and there's alot to it. I will try my best to get it all in. I had been having irregular vaginal bleeding since 2010. I went in for a pap smear and colposcopy and was told I had low grade precancerous lesions. Was told to keep up with pap smears and I did that. Went in for another series of tests with a different doctor in 2011 and was still diagnosed as precancerous cells but high grade. Was told not to worry it was still in the precancerous stage and to get a colposcopy. I did that in Sept. and was diagnosed as having invasive cervical cancer. Went for a pet scan/cat scan and was told that the cancer did not spread. It was combined to my cervix and nothing lit up at all not even in my cervix so the doctor was a bit baffled by that and said my bladder was hiding it yet it was decided based on colposcopy to go in a have a radical trachelectomy to have my cervix removed on Nov 8th 2011. Of course I wasn't happy about all this but I wanted to do what was best to get this cancer out of my body. I had the surgery and wound up having a radical hysterectomy because the cancer was in my cervix and uterus, in the parametrium, 3 of my lymph nodes had microscopic amounts of cancer and my lympho vascular space was invaded. I lost everything but an ovary. Woke up to find this all out and have been a real emotional mess ever since. I'm 32 years old. I can't believe this. I have changed as a person. I'm angry, I cry all the time. I'm a mess. I'm nasty and despondent. This is not me and as much as I try I can't hold it all in. I went in to see the radiologist oncologist last Tuesday and I have to go for chemo/radiation and I am at a high risk for recurrence. I have been asked to take part in a clinical trial and want to do it but can be selected in one of 2 arms where I may be a placebo and don't want that cause I'd rather have the extra chemo. I know everyone on here is going through their own battles. I just can't believe this. My lungs have been bothering me for a week now and I'm scared that it travelled to my lungs cause why else would it feel like this. I'm short of breathe and I won't see the doctor til Tuesday to ask for a test or a scan. I am not ready to die, I haven't even had enough time to enjoy my life. I am very pessimistic about this whole thing and I wasn't before. It's just that all the tests let me down and I wasn't expecting all this. Since my surgery my bladder is not functioning. It's been almost 2 weeks since the removal of my catheter and I havent had any sensation there and I don't know when I have to urinate. Doctor says I have to give that sometime since they had to move it to get the cancer out of the parametrium but it's so frustrating. I don't feel well and can't get rid of all the bad feelings I have. I don't know how I can become positive and fight when I feel so bad. So, if there is anyone out there going through the same thing I'm going through or have some words of inspiration or anything at all, I would appreciate it. Sorry this is so sad but I have to get it out of my system, Thank you, Christina

funbeadgirl
Posts: 153
Joined: Jan 2009

Dear Christina,
I am so sorry for what you are going through and for the pain, despair and uncertainty that you feel right now. My cancer story is different than yours, I am older than you, but I have had the feelings you are describing now. In fact, I am in the battle for my life for the 3rd time in 3 years with cancer, I am currently going through chemo, I had 2nd treatment 2 days ago, so I am not feeling the best right now, I am sick, sore, tired and weepy, but I do know that it will pass and I will feel better and for as bad as I feel right now, I know that it will be all worth it next Spring when I feel better than I have before. My first chemo was very hard on me, I honestly felt I couldn't endure it again, but here I am 3 weeks later. I have had 4 surgeries in 3 years, radiation twice, once on my full pelvic area and now chemo. You are still recovering from your surgery so it is normal to feel the way you do, you went through a lot physically and emotionally. Please give yourself some time to heal in body and mind, it really will get better. Do you have someone to be with you when you visit the doctor? Perhaps your mom or a trusted friend..that is helpful, especially when you get so much information, another set of eyes and ears can pick up and help you sort out everything. Write questions down, even write down your fears and take then with you to doc. I actually typed up my list of questions and gave a copy to each of my doc..ortho oncologist, radiation oncologist and medical oncologist..that way they knew what I was thinking and each of them could address with me the particular issues I felt were important to me.
This morning my husband presented me with a t shirt someone made for me from his work..it said "3 Reasons I will survive" and it had the pictures of my 3 grandkids on the shirt.I was overwhelmed, this person knew of my struggles, had been through cancer herself and she thought to do such a kindness for me. So today, the day I am the sickest, the day I want to crawl under the covers and hide, today I keep those 3 little faces in my heart and that is what I fight for. I felt your pain in your post, I imagined your tears streaming down your face and I am so glad I checked the boards today, I wasn't going to because I was sick, but there you were and I hope that you can feel a little better. Remember the first 3 letters in cancer are CAN..you CAN get through it! Ralph Waldo Emerson said "What lies behind us, and what lies before us are small matters compared to what lies within us." Find what you have inside of you that will enable you to fight this battle and look to the future with a positive attitude.You won't feel positive everyday, but you won't feel bad everyday.You will be on my mind and I hope for you to feel better.

tina4479
Posts: 5
Joined: Dec 2011

I really appreciate your response. Thank you for checking the board and responding. I hope you are feeling better today. That was really nice of your husbands coworker to make you the t-shirt. It's thoughtful gifts like that that can lift your spirits. My boyfriend has been coming with me to my appts so that's been a big help. My stepdad was diagnosed same day the lesions were found with stage 4 brain cancer and CLL leaukemia and had not one symptom other than recent headaches. He's 48. He's in palliative care. He has I believe it's called sino nasal indefferenciated carcinoma. It's a rare but very aggresive cancer. I feel bad for my mom more than anyone. She's so strong. Sometimes I can't believe how strong she is. I wish I was more like her in that way. She is here for me but I really wish she could come with me to some of my visits cause she's smart as heck and she keeps me together. While my honey is great, I find it easier to break down in front of him and that's not so good all the time. I fight for myself of course, my mom and my 3 cats, lol! I have yet to feel like I'm out of the doom or like I have a good fighting chance and I really need to try to think positive. I just have yet to figure out how to do that. There was a lot of pain that went out in my post and there still is a lot of pain. I go thru more downs than ups all day. I know the radiologist oncologist is sending me to talk to a therapist and maybe that'll help. I'm waiting on a package from the ACS about support sites and resources. I really hope that you'll be feeling better soon and I'll be thinking of you as well. Im sorry I took so long to write back . I didn't realize I had a response. This sites a little different, seems like I have to log in, find my post instead of getting an email saying someone replied. Plus I use my phone to go on the Internet and its not as good as using a computer. Thanks again for replying to me. I appreciate it a lot! :)
Christina

funbeadgirl
Posts: 153
Joined: Jan 2009

Tina, I am so sorry about your stepdad's cancer diagnosis, surely you and your family are going through a great deal right now. The information pack you will be getting from ACS will be very informative, I remember when I received mine, it gave me a lot of places to go to for information. Your radiation/oncologist nurse might also be a source of info for you too, I have found the nurses to be very caring and desire to help the patients.
Remember to write down all your questions and take then to the doc visits, then write down the answers they give you and don't be afraid to ask them to further clarify what you don't understand. I sense from your response that you will be able to get through all of this, just take it one day at a time, maybe one minute at a time if you have to. I am a little better today, so know tomorrow will be better too. I am hoping you have found comfort and hope from the discussions on this board and I wish you, as well as all the others happiness.

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

The comments on your loss of bladder function are correct. It may take along time to get return of function, but it will happen. More importantly, nothing about what you've said would make me think you should be part of a clinical trial that involves a placebo arm. You are at high risk for recurrance, but you can still be cured by standard radiation therapy.

Cured. This means you should get standard radiotherapy treatment planning, which includes radiatioin by a standard 15x15 cm external port and probably vaginal ovoids. I'd be very hesitant to agree to a clinical trial if I were you.

Wishing you the best.

tina4479
Posts: 5
Joined: Dec 2011

Thank you for responding. I am completely lost about everything that is going on. I have about a hundred different questions going on in my head. I just wish I had some answers so that I can stop thinking about it all for a minute. I am supposed to meet with the medical and radiologist oncologists tomorrow. Just cause I'm honestly clueless about it all why do you think I should be hesitant about the clinical trial? I've tried looking everything up and it gives me a headache. The more I read the more negative I get. I am not familiar at all with any of this. I don't know what's good or bad for me. I don't know which way to go. I have yet to read your story but I'm happy that your username says longtermsurvivor! Thanks!

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

I've written you a PM.

tina4479
Posts: 5
Joined: Dec 2011

Im writing you back now. Thank you

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

The comments on your loss of bladder function are correct. It may take along time to get return of function, but it will happen. More importantly, nothing about what you've said would make me think you should be part of a clinical trial that involves a placebo arm. You are at high risk for recurrance, but you can still be cured by standard radiation therapy.

Cured. This means you should get standard radiotherapy treatment planning, which includes radiatioin by a standard 15x15 cm external port and probably vaginal ovoids. I'd be very hesitant to agree to a clinical trial if I were you.

Wishing you the best.

mamadawg
Posts: 17
Joined: Jan 2012

I read your post and had to reply. I was diagnosed last yr with stage 4 cervical cancer. It was not diagnosed until tumor had grown so LG it cut off kidneys which caused BP to cause seizures and coma twice. Actually had pap 2 most prior which came back clean. At time of diagnosis I was told it had invaded vaginal wall and I had at most 6 most a yr if I was lucky. I started aggressive chemo and daily radiation to shrink tumors, all the while I had nephrostomy tubes in my back to aid kidney function. Tumor WA shrunk but first follow up pap showed recurrence so I was left with only one option. A radical surgery called total pelvic exteneration. I had it last may. They removed all female organs, my bladder, part of my retum and my left vaginal wall plus all of my pelvic and abdominal lymph nodes have been removed. I now have a colostomy (which is to be reversed), a false bladder made from some intestines and a reconstructed vaginal area made from some muscle from my left leg. All in all I have had21 surgical procedures from last Aug. But I am currently cancer free and finally feeling like my old self. I am only 39 and was a very athletic person, so some things have changed. But I am here for my husband and my 5 kids. So be positive, I never let myself think this was the end, I was NOT going to let cancer beat me. So be strong and know there is always HOPE.

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