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Mom diagnosed with cervical cancer

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

My mom was just diagnosed yesterday at 61 years old with cervical cancer. When I sat there listening to the Dr deliver the news I felt numb. I thought this cant be happening. She had pre cancer cells about 16 years ago that were lasered off. She then went for her follow up and told they were able to remove everything and she was good to go. Little did I know she had not had another pap since then. She started bleeding after being in menoapuse for many years. She had a pap and it came back abnormal. She then had another test to see if she had cancer. They called her yestarday and told her to come in and bring a family memeber. We knew that was not a good sign. She is handling it a lot better than me. I dont let her see how worried I am but all I can do is sit at home and cry. This is my mom. :( she goes to see on gyno/oncologist Tuesday to discuss what to do next and then they will make another appointment to go from there.  If anybody has any advice to offer me I would love to hear from you. I just keep thinking...has she had this for 16 years?? And if so, does that mean it has spread to other organs by now?? Im just so scared and confused. Thank you...  

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Thnak you so much!! I will defintly look. Just wondering after chem/radidation if there is still cancer if she could try that. I'm just so nervous it will still be there after treatment so I'm trying to figure out what to do. Sounds like this is working for you, which is wonderful!!!! :)) So, defintley worth giving it a try!! 

FightingSpirit
Posts: 34
Joined: Feb 2013

"He reminded us while my mom was in recovery that her prognosis is very different than when we first began. Almost like he was preparing us. He said her tumor growing back so quickly was rare and she was defintly in the minority group with that. I stay strong around her, but come home and cry. I dont know what to do. :("  

 

Dearest Ren,

As I said, I don't know what other chemo/rad/surgery options are available if first line chemo doesn't work since I have taken a different route.  Perhaps the ladies who have been successfully fighting this disease conventionally for years can help???  I decided that chemo and radiation would be my last option instead of my first, so all of my research has been in the naturopathic and alternative treatment arenas.

My suggestion is that you reach out to people like ccfighter (here and on other boards) and ask them to point you in the right direction for researching your next options NOW so you can be prepared to converse with the doctors about next steps JUST IN CASE this chemo is not successful.  It's not unusual that we don't ask questions.  We always assume that the doctors know best, especially when we are dealing with the overwhelming emotions and fear surrounding cancer.  I'm just suggesting that you and your Mom can start searching to see what else is available since this doctor is not sounding optimistic.  Don't get discouraged, get busy!!! 

Also, don't be afraid to ask the doctor "What is the plan going forward if the chemo does or does not work?"  Remember, the doctor's are there to work WITH you and FOR you.  If you have questions, ask.  If you have doubts, get a 2nd , 3rd or even 4th opinion.  Told you're out of options or want to take the road less traveled?...check out clinical trials.  Ultimately, it is in God's hands; but from what I've seen here and on other boards, you are at the beginning of this journey and there are people willing to help you through this.

Cry if you must, but stay strong and prayerful as well.  You will get through this.

{{Hugs}}

Fighting

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

I have my good and bad days and I have to say yesterday has been the worst day for me by far. Getting up this morning and logging into this and reading this has really helped. You have no idea how much!! Thank you!! Sending prayers and hugs your way.

ren12's picture
ren12
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Joined: Jul 2013

They tried to put the stint in moms urinary tract tube again yesterday but it didnt work. :( She has the tube to drain it some more and they can try the stint ONE MORE time. This will be on Jan 2nd. They said it looks like it has been blocked for a long time and its possible they cant get the stsint in because her kidney isnt working right. I woke yesterday just knowing it was going to go right in, and of course it didnt. I have been trying very hard to stay positive, but this is getting hard when you never recieve any good news.

ccfighter
Posts: 396
Joined: Jan 2012

Oh, your poor mom.  I'm sorry she has to go through this.  I hope that jan 2 will be a good day for you both and they can get the stint in easy.  This is a rocky road but stay hopeful.  Clinical trials may be of some benefit but they usually require that you have had systemic chemo.  Quality time through the holidays will lift your spirits and renew your energy for the fight.  Hugs to you and your mom.  Stay strong, but cry when you need to.  We are all here for you.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

2013 has been the worst year by far for my family. With the power of prayer 2014 WILL be better!!! I am asking for prayer warriors once again. Mom will go to have her stint put in her urinary tract tube on the 2nd. This will be the last time they can try it. I wish health and happiness to all of you for 2014 and many more years to come.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 550
Joined: Mar 2013

May God hold your mother in His loving hands. 

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

Praying for your Mother...and you!  It can be hard to be the strenght of a family so take care of yourself.  Many Blessings in the New Year and always,  Best Debrajo

FightingSpirit
Posts: 34
Joined: Feb 2013

Sending up prayers for you and your Mom.  How are you holding up?

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Thank you all so much!! I am a nervous wreck about tomorrow. I just have to remind myself to have positve thoughts.

ccfighter
Posts: 396
Joined: Jan 2012

Prayers and positive energy for you mother.  Hang in there.  And many many well wishes for health, happiness and love in 2014.  Let us know how it goes.  Hugs.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Praise the Lord!! The stint went in!! Thank you so much for the prayers! They are working. She has last chemo treatment tomorrow 

ccfighter
Posts: 396
Joined: Jan 2012

Wonderful news!  2014 off to a great start.  Hugs!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 550
Joined: Mar 2013

Never underestimate the power of prayer!!!  We all celebrate for your mother!!!  She is so blessed to have such a loving daughter. 

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Received the worst news yet!! Mom found two knots on her left side. Cancer has spread again and is incurable. Dr said do you have a year? maybe. Do you have months? probably. He is adding something to her chemo but this will only prolong life. She will get this once every 3 weeks. She broke down and was a mess for about 5 minutes. Then she said I have my boxing gloves on and I am still going to fight and beat this. She said she has too many little grandkids that she is not ready to leave. We are working on her getting a second oponion. Of course I'm a mess but think if she is still going to be positive and fight this I will do the same.

So crazy that she went from its microscopic and 90% survival right to now this

ccfighter
Posts: 396
Joined: Jan 2012

Oh no!  Not the news we wanted to hear.  Did they biopsy or do pet/ct?  Are they sure these "knots". Are cancer?  Prayers for you and your mom.  Hope lives on.  Avastin added?  Doctors don't know everything.  Please get a second opinion and look into clinical trials.  Warm gentle hugs.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Thank you ccfighter!! They did biopsy on them, but he said it will just confirm what he already knows. She has also been having a lot of pain from she thought was from a hemmroid. He tried to exam her there but had to stop because it was too painful. He said he would guess that was cancer too. The knots are pretty big on her side. She had me feel them before we left yesterday. My brother in law is gathering all her records erywhere she has been since being diagnosed. And my brother  will be here today and he is going to research the top cancer places in Illinois. (She has medicaid card, so not sure we can go out of state with that). My brother in law is going to put all her records in a pdf and email them to that place. This will all be done today since we do not have time on our hands. I am a teacher and my first day back to work since Christmas break and I am dreading it. I just want to be with my mom :(

ren12's picture
ren12
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Joined: Jul 2013

Also he said he will add Avastin if needed but wanted to wait until last minute because it has some pretty bad side effects. Has anyone used it?

ccfighter
Posts: 396
Joined: Jan 2012

I know of ladies who have had avastin and experienced very little side efts from it.  The most dangerous possibility I believe is the increased chance of bleeding since it is designed to stop blood vessels from forming.  I have never had it.  Also check out clinicaltrials.gov and search cervical cancer or solid tumors for any clinical trials that may appeal to you.  I have had my eye on the adxs11-001 listeria vaccine trial.  Gog is doing a study on it.  I am glad that you will be seeking a second opinion.  I hope that your mother is comfortable.  Hugs.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

I will check into that!! Thank you

NoTimeForCancer's picture
NoTimeForCancer
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Joined: Mar 2013

"Going to fight and beat this".  Wow.  Continue to support your mother as you are and know that there are many out here praying for you.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Dr did not get enough tissue for biopsy. She goes on Thursday for scan. We have her going to Jewish Barns Hospital in St Louis MO. They are supposed to get back with us Monday. Even her DR thought going there was a great idea. He said up to the date technology and lots of clinical trials there. 

I hear miracle stories all the time so I figure why cant she be one of them? She is not ready to give up at all. Thank you for all the prayers!! I know we have God on our side!! 

teg's picture
teg
Posts: 12
Joined: Apr 2013

The latest review of top rated gynecologic oncologists by US News has a list of physicians in Illonois. I don't know if it will be helpful, but I hope your mom finds a cure soon. You and your mom are in my prayers.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Thank you!! I will check those out!

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Mom went for biopsy today and the DR that did it said he wasnt 100% sure but since those knots are on her incision marks from her radical hysterectomy, he thought maybe they were scar tissue. Dont want to get my hopes up, but at the same time I cant help it!! Anyone else have this happen to them? And did it turn out to be scar tissue?  She meets with her Dr on Tuesday so its the waiting game again.

ccfighter
Posts: 396
Joined: Jan 2012

I hope the biopsy results are benign.  Lots of people develop scar tissue.  It can cause lots of problems including adhesions.  I do not have any noticeable lumps around my incisions.  I did have a recurrence in the central pelvis that was smack dab in the middle of my original incision, and when resected was two centimeters.  I could not feel it externally.  Actually, it gave me no symptoms Except for a brief fever and vomiting with abdominal tenderness that resolved after a few days.  i am told the tumor spread by blood to my abdominal muscle but I'm not sure really.  Too coincidental it was located in my muscle at the origonial incision.  It had grown into my small bowel and so part of that was resected too.  

sometimes there are internal sutures from surgery that are left and can be felt as small little bumps, about the size of a pea.  Did your mom have a ct?  Instead of biopsies why not a pet/ct?  It seems they would have a more concrete and broader idea of the extent of her disease With a pet/ct.  Just a thought.  I hope your mom is resting comfortably.  Hugs.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

We were wondering the same thing about why she wasnt getting a scan. Actually thats what we thought she was getting yesterday. We are going to find out on Tuesday when she sees her regular doc. Her lumps are pretty big, much bigger than pea sized.

Her appointment with Jewish Barns Hospital in MO is the 29th. It cannont come soon enough!! Especially since her radiation is done and we have to wait for chemo again until results of biopsy. Which should be Tuesday. Theres just nothing figting this right now. 

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Biopsy confirmed that lumps on belly are cancer. :( She had blood work and as long as it comes back ok she will start carbo/taxol on Thursday. He said side effects are flulike symptons, nauseau, fatigue and hair loss. She sleeps so much now I couldnt imagine how much more fatigue she can get. He said her hair will probably start falling out in about 17 days. My sister is wanting to cut hers off to make into a wig, but having a hard time finding a place to do that. Plenty of places to buy one but cant find a place to cut hers and make one. Any advice on the side effects? Thank you!

ccfighter
Posts: 396
Joined: Jan 2012

Oh, I'm sorry.  Not the news we were hoping for.  I can't help with the hair into wig thing.  I had long hair, curly, down to the middle of my lower back.  I cut it off and sent it to locks of love in Florida.  I hated to think it would go to waste.  I never got a wig.  I just did hats and scarfs.   I expected my hair to fall out, my husband gave me a buzz cut.  I had three week cycles of carbo/taxol, and my hair was out before my sencnod infusion, so 17 days is about right.  Nobody told me though, that your hair falling out actually hurts.  My scalp was super sore before the hair was finally gone.  Once it was out, then my head was fine, but my scalp was really sore before the hair came out, which I was not expecting.  Taxol can cause some bone pain.  I found it pretty painful on. He first infusion.  They told my Tylenol or Advil would take care of it bur it didn't.  Not even percocets.  That lasted from the third to the sixth day after infusion and then was gone.  I brought it up with the chemo nurses and they told me to take L-Glutamine powder starting on day one through day 6.  I did this for the next cycle and had little pain.  I didn't even need tylenol or anything.  Other than that, I would describe the week of infusion as blah.  Constipation from all the meds is a huge problem and I strongly recommend staying on a stool softener beginning a day or so before infusion and for a week after.  I was always hungry, but eventually the carboplatin/cisplatin made things taste weird and I became very picky.  Finding something I enjoyed drinking was the hardest.  Water tastes just awful.  Hydration is important.  Drink anything and everything you can find that works for you.  I will say that I had anticipated my chemo experience to be much worse than it was.  I never vomited, I really wasn't even nauseous.  I was far more nauseated with cisplatin than carbo/taxol.  Don't worry too much if the white blood cells and Platlets fall.  Carboplatin is real good at that.  Many need neupogen or neulasta to keep the white blood cell count up.  That has it's own bizzar side effects, at least for me, although some are not phased by them.  The second week I was a little fatigued but mostly felt like my old self, and the third week I was my old self, full of energy and enjoying every moment.  Your mom will do great and the chemo will kick this cancers butt to the curb.  

 

Also, so,I don't know exactly where your mothers tumor are.  You say near the incision.  You may ask her oncologist about radiation for these tumors.  If they are more superficial, either cutaneous, muscle or peritoneum, then there are options for radiation that does not penetrate deep, I think called electron radiation.  I had this done in the area of my abdominal wall tumor (which looks like it was also in my incision) that was in my pelvis in an already irradiated area.  My original radiation was targeted to deeper tissue or my lymph node bed and vaginal cuff, and tissues surrounding where my uterus had been.  I was able to have additional radiation with electron radiation that only penetrated to the depth of my peritoneal lining, so the muscle, fat and skin was what was receiving the radiiation and not the deeper already radiatied tissue.  My resected tumor only had a clean margin of 1mm and I insisted on more radiation or further surgery for a wider margin.  My radiation was only for five days for this, not five weeks as I had previously.  No side effects.  Just a thought.

 

hugs to you and your mom.  I will continue to pray for healing, and a cure for this awful disease.  There is always hope.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

I printed this off and gave it to her. Made her feel so much better! Once again, thank u so much!!

ccfighter
Posts: 396
Joined: Jan 2012

Did your mom have chemo today?  I hope things went well.  hugs and healing thoughts.  Your mother is lucky to have you.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

She did. She seemed almost drunk within the first hour. The nurse told us she was being given ambien and benedryl so that was normal. I have to say she was feeling no pain. Wish I would have recorded her. She would get a kick out of it today. We also got her a temporary wig until my sister can get hers made into one. She finally found a place in Minnesota that will do it. But sending her hair and waiting for it to come back will take about 5 weeks. Thanks for asking!!

ccfighter
Posts: 396
Joined: Jan 2012

I'm so glad she got started and things went smoothly.  The Benadryl will knock you out, I slept through most of my entire first chemo.  I'm glad that you found a place to make the wig also.  Your mother will be so happy knowing she is wearing her daughters hair around.  Your sister is very sweet to do that.  Take good care of your mom and keep us updated.  We are all rooting for her.  Hugs.

babe12
Posts: 63
Joined: Jul 2012

Ren, I've been keeping up with your mom's progress and I have to commend you (and your sister) for your courage & persistance keeping up with your mom's diagnosis. She is lucky to have you in her corner fighting with her. I was stage 4a vaginal cancer dx 9-23-11 and I'm cancer free now. It's a tough fight at times, but having support makes it easier. Hang in there, you and your mom are in my thoughts and prayers.

Babe

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Thanks ladies!! babe12 that is wonderful!!!! That just shows that this can be beaten!! So happy for you! 

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Went for a second opion to Jewish Barns Hospital in St Louis and they pretty much said the same thing. The only difference is they can try a clinical trial on her but not in the middle of getting chemo. There were two doctors in there with her, one older and one younger. The younger seemed really hopeful saying clinical trials could really help but the older one was just awful. I wouldnt expect or want any doctor to sugarcoat anything but the way he worded things were just awful. He said what is your reason for coming here and mom replied to get some help with this cancer. His response...well thats not going to happen so get your bucket list ready and focus on that. But as I said the younger one seemed to think he could prolong her life when she is done with this chemo. If she would not have started the new chemo last week he could have given her one yesterday but cannot do it in the middle of treatment. So hopefully there is one available and she is a good canidate for it when she is done. I hate to start losing hope, but I'm beginning to. I dont like these feelings, and try not to think this way, but its getting harder

ccfighter
Posts: 396
Joined: Jan 2012

I'm sorry that you had a bad experience with the poor bedside manner of one of the doctors.  I realize that doctors dont want to give false hope, but the younger doctor seems to have a more positive (and in my mind-realistic) view of the situation.  Older doctors have watched the failure of clinical trials throughout their careers, but younger doctors can appreciate the new and advancing technology and understanding of cancer.

cervical cancer has always had a reputation for showing little sensitivity to chemo, but there is still a percent of responders and long time survivors of this disease, and there is no reason your mother can't be one of them.

i suggest getting a tumor profile done.  google caris report.  This will give an idea of which chemos may be most effective against her cancer.

call NIH and speak with a nurse or someone there that can help direct you to clinical trials your mother may qualify for.

look up ADXS11-001-a listeria vaccine for cervical cancer.  This can be given along with chemo.  It is being conducted by GOG with sites throughout America.

DCVAX-Direct has started clinical trials for all tumor types.  It is being studied at MDAnderson Orlando.

the studies on Avastin has proved to extend survival for advanced, recurrent and persistent cervical cancer.

 

brush off that old doctors words.  Your mother is in controll of her own health care and should find a doctor who listens, supports and doesn't give up so easy.  Your mom is a fighter, and deserves a fighting chance.  Hugs to you both.  Stay strong.

ren12's picture
ren12
Posts: 74
Joined: Jul 2013

Your words always makes me feel better. You have no idea how much that means to me. 

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