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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...  

ccfighter
Posts: 396
Joined: Jan 2012

I'm sorry foryour moms diagnosis,  hopefully it was caught early.  A hysterectomy is usually done if there hasn't been spread.  She has not had cancer for 16 years, but the virus that causes thiscancer never goes away.  Tell your mom how much you love her and she will make it through this.  Hugs to you and your mom.

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

Thank you so much!! Scares me so bad how she hasnt been checked again after 16 years. Thats why I'm worried that it has spread. The waiting game is the absolute worse!!

mamadawg
Posts: 17
Joined: Jan 2012

First off, I am truly sorry for the news received by your mother. I can only assume by now thatbyou have received the official news and staging for her disease. Please know that as one who was diagnosed with stage iv of this disease that while it can be a difficult battle for anyone of any age, it is a disease which can be beaten. The one good thing about this cancer is that it is verynslow growing so even if it has been in process of formation, it can take upwardsnof 15-20 yrs to actually go from precancerous to cancerous cells.  So I am holding out hope that she was found at an early stage, despite the years between her seeking treatment. Please, if either you or your mother should have any questions, I hooe you will not hesitate to ask. i pretty muchnhave been through it all....chemo, radiation, internal radiation, pelvic exenteration surgery (a hysterectomy on steroids) nephro tubes in and outnof kidneys, and numerous infections and hospitilaizations. i will tell everything straight and up front so you will know thengood with bad. as I suspect you know, it is cancer so it is not all easy, but  neither is it all hell. i just believe in letting women know what theybcan expect and at same time letting them know that just as each womannis differentnso is the manner in which theybwill respond to each treatment or procedure. I do sincerely wish you both the very best!

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ren12
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Joined: Jul 2013

Sorry to take so long to respond as I havent been on here for a while. She had a pet scan and ct scan which showed cancer was right in cervix and nothing else. But after having a loop or leap?? and cone procedure we found out is bigger than they thought. Something about the cancer started in the inside and grew out so it didnt show everything on the scans. It's all very confusing to me. She is supposed to have a radical hysterctomy soon. It's not scheduled yet. They dont think the cancer is attached to anything else but wont know for sure until they do surgery. If so, chemo/radiation will be next. Good news is the said her stage is 1B.

Very sorry you have been thru a rough time. I pray for you and please keep me up to date. I wish you the best!!!!

ccfighter
Posts: 396
Joined: Jan 2012

I'm so happy the pet ct was clear and your mom is going through to surgery.  Hopes for a speedy recovery and no further treatment necessary.  Hugs!

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ren12
Posts: 74
Joined: Jul 2013

They are now saying my mom has a 50/50 chance that cancer has spread to lymph nodes. Its growing faster than they thought. She is going to have a radical hysterctomy on Monday. If they get in there and see its in lymph nodes, they will stop procedure and do radiation and chemo. The Dr said I could go to nci.gov and look up squamous cell cervical cancer stage 1B2. Which I did but still very confused. :(

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

Well mom has had her radical hysterectomy but now have found out 4 out of 12 lymph nodes have cancer cells. In about 4 weeks she will start radiation 5 days a week and maybe chemo 1 day a week. Dr said low dose of radiation cause they are not trying to shrink a tumor, but kill cancer cells. Anyone have more information they can share? Thank you!! Praying for you all...

ccfighter
Posts: 396
Joined: Jan 2012

Your mom will do just fine.  It's not a walk in the park, but not terrible either.  The chemo may make her nauseas but they have very good meds to controll that.  The radiation can cause fatigue, but again, rest and hydrate and she will sail through.  If you have any questions let me know.  I hope your mom is healing easy.  Hugs.

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NoTimeForCancer
Posts: 550
Joined: Mar 2013

cc fighter is right.  Good drugs to fight any nausea, and even if she doesn't feel like eating (that was my side effect) she has to force herself to eat.  Talking with a dietician that specializes in helping cancer patients was helpful, not covered by my insurance but worth the few bucks. 

Radiation can keep working for up to six weeks after you finish, and I was very surprised how it kicked me in the butt!  I think the exhaustion was worse after I had finished radiation, but I figured sleep was part of healing and gave in when I hit the wall. 

 

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ren12
Posts: 74
Joined: Jul 2013

Thank you so much. So nice to know there are people ready to answer my questions when you have your own fight. I dont know you guys but think and pray of you often.

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

Mom had her radical hysterectomy on Sep 23rd and came home with a catheter. She went back a week later, and was unable to go to the bathroom on her own, so came home with a new one. Went back a week after that and same problem. She goes back Tuesday and if unable to go on her own again, she may need to self catherize. Any one else had this problem?

ccfighter
Posts: 396
Joined: Jan 2012

Keep calm.  This is common.  I came home with a catheter after my rad hysterectomy and went back a week later to try and go and I didn't put out enough urine so came home with the cath bag again.  A week later I went back and was successful enough to have the catheter removed but for the next several weeks I needed to run warm water in the sink in order to get my bladder to relax and go.  This takes time.  The surgery is quite traumatic to the bladder and surrounding tissues and time helps these things calm down and return to normal.  Even if she has to self cath for a while, I believe in a short time she will be back to normal bladder function.  Hugs.

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ren12
Posts: 74
Joined: Jul 2013

Thank you. How have you been doing ccfighter?

ccfighter
Posts: 396
Joined: Jan 2012

Doing well.  One day at a time, but NED for now and enjoying my kids and the changing seasons.  A cancer diagnosis is a hard adjustment.  But..each day I count my lucky stars and try to open my arms to embrace whatever the day has in store.  I know things can fall apart at any second, but I chose to enjoy the moment in which I'm in and try not to let the fear and anxiety take over.  Some days are easier than others, but, all things considered...I'm doing awesome.

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ren12
Posts: 74
Joined: Jul 2013

Your strength amazes me as I'm sure it does so many others. What an inspiration you are. :))

shasta34
Posts: 14
Joined: Oct 2013

Ren12, your story is almost exactly like mine!  My mom was recently diagnosed with cerivical cancer stage 1b2.  She has not had a hysterectemy, or any female problems until now, she is 53.  She has had a CT scan which showed a mass from the cervix to the uterus.  Her gyn/onc ordered a PET scan next week and said that after that she will start 5 weeks of daily radiation and chemo once a week for the 5 weeks, but no surgery.  I am praying the cancer has not gotten to the lymph nodes and is just confined to the mass.  Please keep me updated on your mom!!  Your in my thoughts and prayers :)

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ren12
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Joined: Jul 2013

Wow! Our stories are very similar!! They were hoping they would get everything with her surgery, but no such luck. We met with the radiologist today and they will start doing radiation 5 days a week with chemo just on Mondays. They wont start this until at least 6 weeks after her surgery. It's been only 4 weeks so far. I asked him today if they were trying to kill cancer cells or what?? He said there was some that traveled to 4 lymph nodes and where the cervix sat, so that why she needs radiation. Without it the cancer WILL return. She will have a very low dose as they said they are not trying to shrink a tumor but get rid of any left over cancer. She felt very sick last week so she went to her regular DR who told her she had UTI from catheter. She was put on antibiotic, which seemed to help, but she got a call on our way home today that she has bacterial infection from it. Antibiotics wont fix it, so she has to get an IV to get rid of it. Waiting to hear if she can have home health care come to her house and do it or if she needs to stay in hospital. If its not one thing its another....Sending prayers your way, and please keep me up to date on your mom as well. I would very much like to stay in touch with you.

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NoTimeForCancer
Posts: 550
Joined: Mar 2013

You are right about, "if it's not one thing it's another"!  But I think your mother is very lucky to have such a loving, caring daughter.  I am sure your support is so helpful and she is comforted that you are there to help her with this all. 

As a uterine warrior I have to tell you how important caregivers are.  If my BFF was not with me, I really don't know how I would have made it. 

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ren12
Posts: 74
Joined: Jul 2013

Thank you for your kind words. I would be lost without her. How are you doing NoTimeForCancer?

shasta34
Posts: 14
Joined: Oct 2013

I hate to hear about the infection, your poor mom!!  I hope they get it cleared up soon!  My mom had her first PET scan today, the doctor should be calling by the end of the week with the results, still praying it's nothing more than they thought.  This discussion board has been wonderful, I read my mom story after story of the survivors and the fighters, her attitude is slowly getting better.  She's been positive but just really scared of what we don't know yet, but these stories give her hope so I keep reading them to her!  Like you, I would be lost without my mom also.  She is my best friend, we go everywhere together, I call her for everything, I have 2 small kids ( 6 &11 months) and her advice is priceless.  But we will overcome this, I have given her no choice but to beat it!  I would love to keep in touch with you!  It's good to know we are not alone in this battle.  My best to you nd your mom, praying for the both of you!

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ren12
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The not knowing is the worse!! I'm glad she is staying positive. That is how my mom is. She's so much more stronger than I am. Good luck to You and your mom today. Please let me know how it goes

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NoTimeForCancer
Posts: 550
Joined: Mar 2013

I just had a follow up with my gyn/onc today.  We laugh now when I visit and I am amazed when I think back to how it was when I first met him. 

I always pick the last appointment for the day (315 pm) and he never makes in to my room until 420 pm.  I don't get upset about waiting though because I remember how much time he spent with me explaining my surgery and how much more he would have given me if I needed it.

Everyone at work comes to me for medical advice now and the best thing I learned and share with them is to TAKE IT ONE STEP AT A TIME.  Don't get ahead of yourself, do what you have to do today, tomorrow will come and you can do that when it arrives.  Work the plan and be ready to adjust when there is a hiccup.  I think we all surprise ourselves to see what we are really made of when having to walk this journey, but our loved ones are critical to our success.  

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ren12
Posts: 74
Joined: Jul 2013

Wonderful words of advice!! Thanks for sharing :))

shasta34
Posts: 14
Joined: Oct 2013

So we got my moms PET scan results today, other than the cervical cancer, they saw the lymph nodes in the area were involved and said there was a small suspicious spot in her breast (under 1 cm) and a suspicious lymph node under her arm.  Now, we see the radiologist next wednesday to go over the radiation plan, and a new doctor for the suspicious breast spot on Thursday.  I know suspicious doesn't for sure mean more cancer but this has me very worried now!!  I hope your mom is improving and doing well!!!!!

ccfighter
Posts: 396
Joined: Jan 2012

Shasta,

I am sorry for all the questions he pet/ct brought up.  If she has a second primary (breast), it sounds like it was caught early.  She will do fine with the chemo/radiation.  It's a tough road but doable.  Anti nausea meds are a life saver with the cisplatin.  Please know I am hoping for the best outcome for your mom, and a smooth journey.  I hope you guys have answers to all your questions soon.  Hugs.

shasta34
Posts: 14
Joined: Oct 2013

Thank you ccfighter!  I have read your stories, and I must say, you are one tough lady whom I admire very much!!  My mom isn't too worried about the breast spots, which makes me feel better!  How are you?  I have read my mom a lot of your posts, you are an inspiration :)  I'll post when we know more, right now just playing the waiting game again!  Your in my thoughts and prayers!! <3

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ren12
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Joined: Jul 2013

I'm sorry to hear that. I have finally told myself that when anything new pops up, which seems to always do, I just need to think OK lets just do the next step to fix that. My mom should start radiation soon. Nov 5th will be 6 weeks since her surgery. I just hate that she had to wait so long to start it. Please let me know what you find out about your mom. You have Prayer Warriors on your side!!

ccfighter
Posts: 396
Joined: Jan 2012

One day at a time, but I am doing well Right now.  I hope that everything works out well for your mom.  She is very lucky to have you.  Hugs, prayers and positive energy your way.  Let us know how things are going.

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ren12
Posts: 74
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Mom should start radiation a week from Monday 5 days a week with chemo just on Mondays. Chemo takes 6 hours?? WOW I had no idea. She said "Well, guess I better take a good book."  :))

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NoTimeForCancer
Posts: 550
Joined: Mar 2013

I am glad to hear you know how long it is going in.  I had had it all spelled out by my chemo nurse but on my last chemo day the woman in the next bed had just started and had no idea it would last so long.  Your mother will find that she has to use the restroom alot as they are pumping fluid in something has to come out. 

shasta34
Posts: 14
Joined: Oct 2013

Wow, I had no idea chemo took so long either!!  We have finlly met with the radiologist, and things are more involved than we thought.  Some of her para aortic lymph nodes are involved.  The radiologists is going to do 7-8 weeks chemoradiation including whole pelvic radiation, radiation to the abdomen to target the paraaortic nodes, internal radiation and cisplatin chemo once a week.  He told us he is giving a 50/50 chance at curablity.  My mom is trying to stay positive but I could tell after we left the radiologist office, she was not as hopeful as before.  I would of course, rather have heard a higher percantage but 50% isn't all that bad!  I am an optimistic person and I see this situation as "the glass is half full", I just hope I can get my mom on the same thinking track!!  Pleaase keep me updated on your moms progress! Continued prayers for all the wonderful ladies...

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

Sorry to hear that. Your mom has all of us Prayer Warriors on her side tho!! When does she start or has she already?

ccfighter
Posts: 396
Joined: Jan 2012

If your mom is doing the low dose cisplatin I don't think it will take as long as 6 hours.  That is how long carbo/taxol takes.  The cisplatin infusion itself takes about an hour.  The premeds and fluids take about an hour and then the extra fluids after infusion would be about an hour.  Make sure she wears something comfortable and easy to go to the bathroom in.  With cisplatin they give you a medicine that makes you pee a lot, like every 10 minutes.  It's very annoying but helps protect the kidneys.  Good luck.  She will do great!  Hugs.

shasta34
Posts: 14
Joined: Oct 2013

She will be on cisplatin, thanks for the info!!  That is more than the doctors have told us! :)  She begins radiation Thursday.  I am glad she is finally starting it, ready to fight this horrible creature! Her attitude is getting more positive, I think she is getting over the shock of the diagnosis and now  just ready to get it over with.  I know she can beat this, 50/50 isn't the best odds, but it's not the worst either. I am so glad I have found this board, you ladies have given me so much hope and for that I thank every one of you!!

ppaseka's picture
ppaseka
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Joined: Oct 2011

My wife was in the chair for aprox. 6-7 hours. It was considered "low dose".

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

Mom went for her ct scan to start radiation next week. She has been in horrible pain for a while so she got an exam as well. She has had to sleep (what little she can) in a recliner and has burn marks on her back from using a heating pad so much. This is how much pain she has been in. She is also still not able to urinate without self catherization and that is causing bleeding. So she now has the catheter again. They gave her pain meds which is barely helping. What I'm confused about is during her exam he thought he felt something and said he thought her tumor was growing back. Why so quick?? I thought this was a very slow growing cancer. It's only been 6 weeks since her surgery when they said they had gotten it all except some cancer cells which were in 4 lymph nodes. This is another reason why I hate that she had to wait to start radiation/chemo. Anyone have any advice on this? Thank you in advance

ccfighter
Posts: 396
Joined: Jan 2012

I'm so sorry that your mom is experiencing so much pain.  Have they done another ct to determine the cause?  She should have a ct scan for radiation simulation to map treatment plan.  Perhaps that will shed some light on what is going on with her.  It is unlikely that a tumor has grown back so quickly though I have heard stories of women who have gone for their 3 month checks only to find the tumor has recurred and spread.  Some are quite aggressive.  The need to wait for radiation is valid as the healing process from surgery takes take and radiation would interfere causing even more problems.  Chemo does not need to be withheld though, she can start on that right away.  If there is potentially a recurrence I would speak with your oncologist about starting chemo ahead of radiation.  This will also provide greater radio sensitizing to the tumor cells.  Hopefully the pain is caused by a benign condition, a surgically related healing pain an not a cancer related pain.  I hope she finds some relief soon.  Hugs.

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ren12
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Joined: Jul 2013

I'm really hoping that pain is caused by that too!!. She had a ct scan Tuesday but she still hasnt heard any results from it. And that was to begin treatment for radiation/chemo hopefully for next week. Wondering why they didnt start the chemo earlier. I have been praying that her doctors are making the right decisions so hopefully they are. Also, wondering if she should have a second opinion. As always, thank you so much for the advice!!

ccfighter
Posts: 396
Joined: Jan 2012

Second opinions never hurt.  Where is she being treated?  Do you trust her doctors.  Does she trust her doctors?  If she's willing, a little maryjane might take the edge off The pain.  Hopefully, you will have answers soon.  Take good care of your mama.  You are a great daughter.  Prayers for healing sent your way.  Hugs.

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

Found out today mom starts radiation/chemo Tuesday!! I am so excited. I hated the waiting. She will be getting cisplatin and linear. I am told this is small dose with little side effects

ccfighter
Posts: 396
Joined: Jan 2012

So glad you guys have a plan.  Adjuvant treatment. Is much easier then prinary treatment.  She will be fine.  Many wishes For an easy treatment and speedy recovery.  Hugs.

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

Mom is still getting her chemo/radiation and 2 weeks ago they did another cat scan. Cat scan confirmed tumor is back and fully aggressive. She had a phyiscal exam today and he thought chemo/radiation has reduced its size by 50%. The tumor is causing complications with the urinary tract of the right kidney. The dr has ordered an immediate stint to open they tract. Waiting to hear when she goes in for that. This will allow both kidneys to work again. She is also still on catheter since her surgery!! She is always in severe pain in her abdomen and legs. Her medication has been upgraded twice the reccomended. Nausea is still awful so they have also given her something for that. She is encourged to eat foods in high fat and protein. She is getting so skinny. :( Anyone have anything similar to offer advice? Thank you!!

ccfighter
Posts: 396
Joined: Jan 2012

Ren,

I'm so sorry your mother is having such a hard time.  Have they changed her radiation dose to a higher primary treatment for the recurrent tumor or have they continued with the adjuvant dose?  Also speak to the doctors about starting on a combination chemo regimine such as carbo/taxol.  Avastin is also recently approved for cervical cancer and starves the tumor of its blood supply.  

For weight gain I will suggest marijuanna to increase appetite and reduce nausea.  Full fat yogurts are also good.  Instead of focusing on nutrition try to find the foods your mom is enjoying and is willing to eat and have a lot of it around for her.  Emend, compazine, zofran, Ativan and aloxi are commonly prescribed anti-nausea meds.  Sometimes you have to try a combination to find what will work.    There are pain pumps which you could bring up with your doctor.  I don't know how often these are used.  It is a catheter inserted into the area of the nerves in which pain arises and a numbing medicine is delivered directly to those nerves to relieve the pain.  

 

Thinking of your mom and sending healing energy.  Hugs.

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ren12
Posts: 74
Joined: Jul 2013

I'm not sure if they have changed her radiation dose but I will find out. Had no idea that was possible. She went yesterday for the stint and they discovered the was mass on both sides in her urinary tract tube. They were able to get in a stint in the left side but right side was to blcoked. They said she has to have two healthy kidneys!! So they inserted a tube to drain her kidney until Tuesday then she will go back and they will try the stint again. They told us her kidney was aslo swollen due to the tube being pressed from tumor and urine had been running into it. She is being very positive and told her DR to do what he needs to do and she believes he will get rid of this. He said she had a very aggressive tumor that seems to keep getting the upper hand and sometimes the man upstairs has other plans for us. Which makes that very hard to hear. 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. :(

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ren12
Posts: 74
Joined: Jul 2013

On a better note, they have given her a pain patch that she changes every 3 days. She has no pain at all!!!

ccfighter
Posts: 396
Joined: Jan 2012

I'm so glad that they have her pain under control.  That is wonderful news.  I am sorry that your mother is going through this.  I will keep her in my thoughts and prayers.  Sending healing energy and lots of warm hugs.

FightingSpirit
Posts: 34
Joined: Feb 2013

Ren,

So sorry to hear about you and your Mom's struggles with this disease.  My thoughts and prayers are with you.  Since I chose an alternative route, I don't really have any advice or insight into treatment, but wanted to offer you support and encouragement.  Research, research, research and don't be afraid to ask questions about other options/trials.  Have the doctor's discussed changing her chemo cocktail yet or is it too soon?

Take care,

Fighting

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ren12
Posts: 74
Joined: Jul 2013

Thank you CCFighter!! And FightingSpirit I'm curious, alternative route? As far as I know I think she only has chemo 2 more times. They said she would have a total of 6. They didnt say anything yesterday about changing anything. I wasnt aware they did that or I would have asked that yetsreday for sure!! Wonder wht they havent mentioned anything like that.

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ren12
Posts: 74
Joined: Jul 2013

Shasta34 I have been wondering how you and your mom are doing

FightingSpirit
Posts: 34
Joined: Feb 2013

"And FightingSpirit I'm curious, alternative route? "

Ren,

I had 1b1 grade 3 endocervical adenocarcinoma with 2 positive pelvic lymph nodes.  I was misdiagnosed prior to surgery with uterine cancer, so fortunately they automatically did a radical hysterectomy, lymphedectomy (sp), removed the omentum and did a pelvic wash.  Since there was no cancer in the washings or surrounding areas and they were able to remove all visible cancer, I chose not to have the recommended preventive radiation and chemotherapy as a first line treatment.  Instead, I chose to use various natural cancer protocols to work with my immune system to fight any remaining cancer cells.  I am currently NED per my CT scan in October.  Also, according to another test I use to monitor my progress, the number of active cancer cells in my body are decreasing.

My regimen consists of various supplements, herbs and special dietary requirements.  If you click on my name, you can see my regimen.  In addition to what is posted, I am also 80% raw, take 25 other vitamin/supplement pills, eat 15-20 apricot kernals, drink 64 oz of green smoothie daily and 80-100 oz alkaline water daily.  It's hard work, and I do cheat from time to time, but I feel great, look healthy and have lots of energy.  Do I still worry that the cancer will come back?  Yes, but I am more afraid of the chemo and radiation, so this works for me.

Take care,

Fighting

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