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stage Iv cervical cancer survivor

mamadawg
Posts: 17
Joined: Jan 2012

I have ready many posts on here, but none from anyone with late stage and some having poor prognosis with early stage. So I wanted to share my story to assure everyone that there is always hope, even with a late stage diagnosis. I will start at beginning so some masy learn some symptoms that they may not think indicate cervical cancer. My issues started back in summer 2009. I was having a lot of low pelvic pin and downing pamprin and other meds for it. Went to Dr and was told I had uti. Went on antibiotics, seemed to ease for few weeks, then came back. This went on for 3-4 months. At same time I was having low back pain, but since I had had this since a car accident yrs ago, I attributed it to this and went back to chiro. When tis don't I was referred to a urologist, was told bladder not fully emptying and went through pelvic floor PT. When pain came back I was referred to my gyno. She did vaginal ultrasound to look for endometriosis. Was clean, but she put me on birth control to see if it eased. Pain continued and another uti about a month later. Went to another Dr who said uti but asked to do a pelvic exam. He said my cervix was bleeding and referred me back to gyno. She scheduled a pap in June 2010. Came back clean and she said nothing about bleeding. Then in July I herniated 2 discs in my back and was scheduled for back surgery July 21. On day of surgery I went into a seizure in admitting room and lapsed into a coma for 4 days. Brought on by high BP of 210/180. Had fluid on brain from it. I was placed on 11 medications and sent home saying I was 'too healthy to stay.' Went to neurologist and said fluid was gone, no brain damage and I could now have surgery. (I was never given explanation for BP I was 38 ran everyday BP always 120/70 pulse in 60s very healthy) Had back surgery in august. While in hospital I noticed unusual urination. Went to family Dr. Referred back to uro. He did another ultrasound and found what he said was a 6 cm mass blocking kidney, but was not sure if it was on cervix or ovary but was solid. Referred back to gyno. Saw her that week. She confirmed mass through external exam but said she did not think it was cancerous. Wanted to do surgery to remove, but have an oncological surgeon there in case. The next week I had another seizure and in another coma and was in icu when diagnosis came back that I had stage 4 b cervical cancer that had blocked off my kidneys and had maybe 6 months to live. I met my oncologist while in icu. This was Sept 2010. I was given a nephrostomy tube in rt kidney to aid function. Was told left kidney was shot at 15% function. Had divinci surgery and abdominal nodes removed. Had port inserted and began 5 doses of chemo while going through 28 daily radiation treatments, followed by 7 internal radiation procedures. Through this I was hospitalized for loss of weight and fluids twice. I went from 140 lbs to 104 and I am 5'11. Had to have another nephrostomy tube placed in left kidney that winter. Had follow up pap in march, came back irregular. Biopsy confirmed recurrence. Pet scanned showed isolated in cervix. Only option left was to have a total pelvic exteneration in may. Had three surgeons, one removed all female organs, bladder and most of rectum. (This is due to fusing process that occurs during radiation) cancer had also spread into rectum and left vaginal wall. Second surgeon made ma an artificial bladder out of some intestines and final surgeon reconstructed vaginal area with muscle from my left leg. I also had several more nodes taken to test for cancer and prevent spreading to them. I was left with a fake bladder and a colostomy and several scars, but all of my margins were clean with no sign of cancer. Following surgery I had a reversal surgery in Nov 2011 to take down colostomy, but due to a fistula it was unsuccessful and I suffered a septic infection which forced it to be redone. My Dr says he will schedule me for a fistula repair in a few months and then attempt a reversal again since I am only 39. I am now almost back to my original weight. Feel more like my old self. Do almost everything I did before I got sick. And most people who don't know can not believe I ever was sick. I am not saying it was easy, it was the hardest thing I have ever been through in my life. And I have 5 teenagers. :-) but I never let myself think this was going to defeat me. Never went on anxiety meds or anti depressants. It never entered my mind that this was going to be my destiny. My Dr could not believe the attitude. I just took what came up next and went on. All in all I have had 20 surgical procedures in the last yr and few months. But I am here and plan to be for a long time. I know this is lengthy, but I hope it serves several purposes. 1. To give signs of what to look for as paps are not always 100%. 2. To help women know some of what they can expect with this diagnosis.
3. To let women know of all options out there for this disease. (As I think I covered the entire spectrum) and lastly to let women know that no matter what the stage or diagnosis there is ALWAYS HOPE!!! Be as positive as you can be. You be the one in control and not this god awful disease. Best of luck to anyone reading this who is starting, going through or finishing treatment. If you should have any further questions or want any more info on procedures I had, my email is mamadawg72@Gmail.com. best wishes. Rose Thompson

BrokenJ's picture
BrokenJ
Posts: 17
Joined: Jan 2012

I have stage 3 vaginal cancer. I went in with a UTI, got a pelvic and some antibiotics and was on my way. One week later, I went in for my yearly pap and got another pelvic. Pap and pelvic were viewed as normal. 2 weeks after that, I went back with complaint of spotting after intercourse. Now she feels it. Ugghh!

In her defense, the tumor was covered with normal vaginal tissue and may have felt like fecal matter in the rectum, according to my proctologist. It took 2 tries to get a good biopsy since it was beneath normal tissue. I'm glad they did the PET scan and could see it. And now that I know what it is, I know that the past couple of years, that pain that I thought was internal hemorrhoids, was actually a tumor.

C'est le vie. Thank goodness it had only spread to a few lymph nodes by my left ovary. Chemo and radiation start on Monday....oh boy!

mamadawg
Posts: 17
Joined: Jan 2012

Wow, your story sounds very similar to mine. I am glad they sound like they found yours a little earlier than mine. I hope all goes well tomorrow w/ ur chemo and radiation. I can recall all too well this journey you are about to undertake, so if you ever want anyone to talk to or ask questions of from someone whose been there, please do not hesitate to send an email. My email is mamadawg72@Gmail.com. I do hope you have a wonderful support group nearby. On more than one occasion my husband had to literally dress me and carry me in for my radiation appts. Also, I will recommend some things going in... drink lots of water to flush kidneys, eat small meals throughout day to keep up weight, ( I lost 40 lbs sown to 104), you may want to get a sitz bath as your vaginal tissue may get very sensitive and "burnt" from radiation. And most importantly, keep a positive mental attitude. Know in your heart that every chemo treatment and radiation is shrinking and killing this bastage of a disease. I do sincerely hope that this course of treatment is all that will be required for you. Thoughts and prayers. Rose

ronmybaby
Posts: 20
Joined: Sep 2012

I had some bleeding and same thing went in for a pap and ended up finding a tumor in the cervix. The tumor had cancer. So being older (55) the doctor gave me a radical hysterectomy w/tumor cut out. BUT alittle of the cancer was left on the wall of the rectum had the doc. cut it out I would have had to had a "bag" the rest of my life. So the cancer is on that spot and the top of the vagina. My chemo and radiation will start up in 2 weeks. Write me and tell me what you had to do. I am very nervous and scared the unknown I guess.... I read online the radiation will probably be inside the vagina using a cylinder directing the radiation right at the spots of cancer. How did you know it's a stage 3 did the doctor tell you that? What is stage 3? Is 1 low and 4 high? I don't know. Let me know how you do with your radiation on Monday...good luck girl

Kitty

khaneish
Posts: 1
Joined: Jun 2012

Hello Ms. Rose and everyone-

My sister in Japan was diagnosed with cervical cancer in early April, 2012 after she had irregular bleeding since January 2012. Her doctor initially diagnosed it as state Ib because the tumor was about 5cm. However, after my sister had a surgery to remove whole part of the body (i.e., cervix, overles…etc) as well as 79 lymp nodes (they found cancer on 13 of them), the doctor said to my sister that the stage was actually stage 4 because the cancer was spread outside of the cervix and womb.
They immediately started chemotherapy with Irinotecan and nedaplatin. The cycle was once a week treatment for three weeks. One week of between courses. 5 weeks…
After she reached to the almost end of the second course in mid June, she decided not to continue the treatment. She did not think it was effective, and more so it was ineffective for her because it was killing her healthy cells..etc.
I am not a doctor, so I do not know many things. But I think that my sister is looking for some other treatments rather than chemo…unless the chemo is the only option for her to live long.
My direct question is “is chemotherapy really effective for everyone?” I saw that many people survived from their cancer because they did chemo. But unless the patient is agreed to do, the effect is not as good as it could be. So I ordered the book like,
Questioning Chemotherapy: A Critique of the Use of Toxic Drugs in the Treatment of Cancer
Ralph W. Moss
Customized Cancer Treatment
Ralph W. Moss
Natural Strategies For Cancer Patients
Russell Blaylock M.D.
What do people think about these perceptions??

My sister has a 2-year-old daughter. I want my sister to live as long as she can be. ..
Any advises will be greatly appreciated…

K.H.

ccfighter
Posts: 374
Joined: Jan 2012

Hi Khaneish,
I am so sorry about your sisters diagnosis. I want you to know that this disease is curable and that your sister can beat this. I have never heard of so many lymph nodes being removed before. Positive lymph nodes do not make her a stage 4 unless the positive lymph nodes are outside of the pelvis. If the disease is confined to the pelvis, this is considered local or regional metastasis and not distant metastasis. Usually, the prognosis for pelvic lymph nodes are more similar to a stage 3 diagnosis. Chemotherapy is standard in this scenario, usually in combination with radiation therapy. The Nedplatin is similar to cisplatin and can be used as a radiation sensitizing agent. It seems to also be common to add more chemo before or after radiation to "mop up". Any stray cancer cells left behind, usually with platinum containing combination therapy. I would strongly urge your sister to continue with standard treatment since it is known to be curative for this type of cancer. I understand her worry about damage to her healthy cells, but if the cancer is not killed off by the chemo, then the cancer takes over the healthy cells anyway. She can always get a second opinion from another doctor. After treatment, she can work with alternative treatments and detox to help repair any damage to the healthy cells caused by the chemo drugs. I wish her the best and pray she recovers from this disease to raise her little girl.

Jodyspi
Posts: 2
Joined: Jul 2012

Hi. I just read your story. I was diagnosed with stage Ib cc 7 years ago. I had a radical hysterectomy at that time. A couple of weeks ago I began having s/s of a uti along with pelvic pain and pressure? I'm going to my oncologist thurs to have a pap and an examination. I've heard several stories like yours. I don't want them to give me antibiotics and send me on my way! I've never had a uti before so I'm not prone to them...that scares me even more. I hope they are thorough and do an ultrasound or a scan. I'm so scared.

susan rose
Posts: 6
Joined: Jun 2012

Hi Rose
My sister has been diagnosed with a rare cancer and she is doing well so far while in chemo. I am amazed by you and your story. You have such strength and I can see that I am going to have to step it up now and do my best to help my sister keep a positive attitude to fight this sneaky disease. She had no symptoms at all until a few months ago she had some strange odor and spot bleeding. At that point it was dianosed in stage 3 and the doctors tell us this doesn't show up in paps or even blood work in stage 1.
Are you on any special diets or herbs? We are thinking of going to Nevada to a clinic that specializes in cleansing techniques and diet for the cancer patient. We were told she has to wait until she completes the 6 chemo treatments to do this. I hope to hear back from you soon.
God Bless to you and your family
Susan

ceb5656
Posts: 3
Joined: Sep 2012

Hi Rose,

Your post gives us hope for my sister with stage 4 with node involvement near her neck. No other vital organs involved.

We want her to survive and we want to beat this into remission if possible.

Would love to hear from others.

ronmybaby
Posts: 20
Joined: Sep 2012

I cried as I read your post. My husband came in the room and I read it back to him and he got all teary eyed too. I found out yesterday I have terminal (that was the word he said) stage 4 cervical cancer. You could have knocked me over with a feather when the Dr. told us this yesterday. I had a radical hysterectomy and removal of a cancerous 9c tumor only 5 weeks ago...but the cancer I have is fast growing and I have the tumor back again he said. Only 5 weeks it grew back!! I was shocked. He said radiation won't be used all he can do is give me chemo, strong chemo because the lymph nodes in the lungs area now have a sign of cancer. (they did a PET Scan last week). So it has progressed. He said chemo is the only hope. My biggest problem is the tumor because it is pressing on the rectum and the bladder and I can't go to the bathroom. I am now drinking smoothies and eating yogurt only trying to get a bowel movement going. Your post did help me. It inspired me to stay strong. We both cried last night and didn't sleep much. I went and got my hair all chopped off at the beauty parlor because I know that is coming. But hair is the least of my worries. I needed someone like you to jack me up and give me Hope in this.

I'm usually a very strong person but this is really hard to digest. I see my chemo Dr. tomorrow and I will hopefully get the chemo started up this Friday. I hope. This way the tumor will start to shrink down and let me go the the restroom.

Thank you so very much for your post. It really did help me. God Bless!
Kitty Mueller, GA

mamado's picture
mamado
Posts: 5
Joined: Jul 2014

I am 63 and will be 64 tomorrow.  Just found out I had cevical cancer two weeks ago.  Things are moving so fast for me, sometimes too fast.  I had PET scan last week and so far cancer has not spread.  I go in Tuesday to have surgery to implant chemo port.  Will start chemo and radiation in two weeks.  Reading all the stories and blogs of other women who have gone through or are going through treatment gives me hope.  I had regular pap smears until 2011 when gyno office called and said it was abnormal and showed HPV.  When the lady told me what HPV was and that it is a sexually transmitted disease, I told her there is not way that could be correct.  I was married to my husband for almost 33 years and no one else and when he died in 2004, I did not have any sexual relations.  The lady on the phone said it could lay dormant for a decade.  She advised me to have another pap to make sure, which I did not do.  I thought that is crazy, there is no way.  Well now in june of 2014 I started spotting and knew that something was not right.  I was moving to Georgia  to stay with my daughter and her husband and get an apartment in Georgia.  My new insurance kicked in july 1st and I made an appointment with primary doctor for july 9th.  Gyno office said they couldn't get me in until the 22nd. Went to primary doctor who did not examine me or do anything regarding the bleeding.  Primary just told me to follow up with gyno appointment.  Well on the 12th of July I started hemorraging and was admitted to hospital.  Spent almost a week in hospital and found out I have stage 3 cervical cancer and the only option is chemo and radiation if I want to beat it. 

It was harder telling my adult children and other family members and I was concerned how my five year old grandson would take it if something happen to his Nana.  I have a grand daughter who is almost 3 also.  My five year old grandson is my heartbeat, I love that kid more than anything or anyone.  I want to beat this demon and live to spend many more days with my loved ones.  Reading the stories of survivors gives me hope but also causes me concern.  I only have my daughter here for support and worry how this will affect her and her job.  I don't want her to have to take a leave of absence from her work to care for me, but reading most of the stories regarding the treatment, I don't think i can do this on my own. I have strong faith in God and death does not scare me, I know where I am going when I breathe my last breath.  I know God will give me the strength I need to fight,  I really don't think my daughter understands what this journey will take from her also.  The future is uncertain and I only have this moment today for certain.  In some ways it seems so unreal and other ways it is very real.  The past week my lower back has been giving me severe pain and my right leg.  The radiation oncologist said the turmor could be pressing on some nerves, and the oncologist said the PET scan didn't show anything as far as cancer in the area of the back. 

My daughter was by my side everyday at the hospital and has taken me to all my appointments, but I do not think she realizes that these past two weeks have been the easy part.  In another two weeks I will began the fight to beat this cancer.  Just reading all your stories, I know I am in for a fight for my life and it is going to take a lot out of me.  I tried to get my daughter to read some of the stories and research what the treatment will be like.  She tells me she will deal with it when I start treatment.  I get so frustrated because if she is going to be here for me, she needs to know there may be many days that she will need to be here taking care of me.  She has mentioned that she can take a leave of absence from her job if she needs to.  She has a very high paying job and I feel bad that she may have to take a leave from her job while I am in treatment.  I almost decided to not have treatment beccause of the impact having treatment will have on my daughter.  The doctor told us if I have no treatment, in 6 months or less I would probably hemorrage worse than I did, the cancer will surely spread to the kidney's and liver within a year and I will be dead within a year.  I am going to sit down with my daughter agian and tell her if she wants me to fight this and win, I need her here for me and I do feel bad about how it impacts her and my other loved ones, but it also impacts me and my future.   I will have 7 to 8 weeks on chemo and radiation starting next month.  If any of you know of good support groups here in Columbus, GA send me an email at shiningstar731@yahoo.com

 

 

ccfighter
Posts: 374
Joined: Jan 2012

Mamado,

I am sorry that you have had this diagnosis but I am glad that you have found us.  yes, you have a fight ahead of you but the fight is doable and you can win.  Keep your grandson close to your heart and let him be the inspiration to keep fighting when the going gets tough.  You will make it through this.

 

i know how hard it is to have to ask others for help,  but I am sure that your daughter will do whatever she has to to keep you strong and healthy.  Rest, eat and stay hydrated.  Radiation is cumulative so the end of treatment will probably be more trying then the Begining of treatment.  You will get through it though, you will be fine.  The meds they have now do rally well to control the side effects of chemo.  Fatigue will be your biggest hurdle probably.  So, rest when your body tells you to.  

Hugs.  We are here for you.

NoTimeForCancer
Posts: 443
Joined: Mar 2013

mamado, please try to think what it is like for your daughter to hear her mother has cancer. I will never forget the look on my mother's face for the rest of my life. My twin sister would cry and cry and cry, and I can't even imagine what she was thinking.  I "hear" your daughter will be there for you, please let her find her way to get there.  For you?  Yes, read and ask questions and find out as much as you can.  I think the 'unknown' is the worst part, and I remember the last day of my chemo, which was the last day of all my treatment, a woman in the chemo suite caddy-corner to me.  I felt bad that we were celebrating my completion and there she was just starting.  I stopped by her bed and said, I know it seems like you will never get done.  It seems so far away, but take it a step at a time.  The chemo nurses are wonderful and you are going to amaze yourself. 

ccfighter would best be able to answer questions on your cancer.  I am just a visitor from the Uterine board, but we are all sisters of below the belt cancers.  You have the right fighting attitude, so stick to that.

mamado's picture
mamado
Posts: 5
Joined: Jul 2014

My daughter is great.  She has wanted now to go to the doctors with me and she will asks questions.  She is a great support for me and I am for her.  A good friend  hers was killed in action on the 12th and it has hit her really hard.  I let her know I am here for her too.  Treatment is going pretty good right now, just starting though.  I just think everything was going so fast, with being told I had cancer and the next sentence the doctor saying chemo and radiation right away. 

ccfighter
Posts: 374
Joined: Jan 2012

I'm glad things are going smoothly for you.  Good luck with treatment.  Keep us updated.  Hugs.

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