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Hi, new to this board with cervical cancer

AnnNYC
Posts: 27
Joined: Mar 2016

Hi everyone, I was diagnosed with endometrial cancer last week but have since been told that it is not uterine cancer but cervical cancer so I thought it best to check in here to see what information I can learn from you all.  (The ladies on the uterine board are just lovely and have been so supportive!)

My stats:  Stage 1B1 cervical tumor 3.3 cm (not into cervical wall yet), 41 yo mom with two young kids and husband

Likely lymph node involvement so going for a lymph node biopsy today to confirm.

Recommended treatment:  Chemoradiation 5 weekly treatments, no surgery.

Any women on this board have a similar recommendation?  I was really surprised to hear that the plans for hysterectomy were being dropped.  The gyn/onc I met with on Monday indicated it will not be necessary after chemoradiation either.  Is this typical from your experiences?

Thanks so much for any feedback you can give.  The last 7 days have been a whirlwind of activity and crash learning about a whole new world.  I am determined to fight for my life and I am trying to learn as much as I can!

ccfighter
Posts: 476
Joined: Jan 2012

Hi Ann,

im sorry that you have had this diagnosis but you are not alone.  I was diagnosed with 2A cervical cancer in November of 2011.  I had a hysterectomy and then chemo, and then chemo radiation, and then more chemo.  I had a hysterectomy even though my oncologist knew I had positive lymph nodes.  

You may want to get a second opinion and be explained all possible benefits and consequences of your options.  I was 32 when diagnosed.  I think my oncologist went for surgery for a few reasons.  First, my histology was adenocarcinoma ( later changed to adenosquamous) and some studies suggest this type is not as radiation sensitive as the squamous.  Second, primary radiation is far more likely to leave you with lasting side effects that could result in reduced quality of life.  Knowing I had positive lymph nodes and that I would require adjuvant radiation, my oncologist took only the two known positive nodes plus a few more for sampling, instead of a full lymphadectomy that would have likely resulted in future lYmpedema.

all that being said, some believe primary radiation to be just as effective as surgery and less likely to cause the cancer to spread.  I did have a recurrence a year after diagnosis, with metastasis to my lung and abdominal wall.  My cancer was very aggressive, poorly differentiated and of rare histology (adenosquamous).  I had those tumors removed, did more chemo and radiation and have been No Evidence of Disease for over three years.  

When I was diagnosed my kids were, 4,6 and 8.  It was all hard on all of us.  Friends started a meal train and that helped tremendously.  Treatments are exhausting.  Let people help.

good luck with your biopsies.  I hope they come out clean.  Hugs.

veron2272001
Posts: 1
Joined: Apr 2016

Hello All.

I was diagnosed with stage 2b invasive cervical cancer, 5.5 cm tumor in Nov 2015 at 29 years old. I am a mother to 3 boys (birthed 2, adopted 1). I have never had an abnormal pap or probolems. My last pap before diagnoses was sept of 2014 and that came back free and clear without any questions. My doc recommended I do 6 weeks of chemoradiaiton and brachytherapy (internal radiation). I ended up doing 5 weeks of cisplatin concurently with the external radiation 5 times a week. I could not get the 6th dose of chemo because I had an allergic reaction to the 5th treatment. Once the chemo radiation was finished, I had a sleeve inserted into my cervix so I could get 5 doses of the internal brachytherapy. I did have to receive a neulasta shot (check for spelling) to boost my immune system because my counts were so low which didn't happpen until week 6. Besides the complications listed, all went well and the doc said she couldn't see the tumor anymore. I go back on the 25th of april to get that confirmed with the radiation doc and then the chemo doc a week later.

I too questioned the doctors about a full hysterectomy but they all told me it was too dangerous as the tumor was covered in blood vessels, it was unneccesary as the removal would not cure the cancer or prevent it from coming back.

5 weeks after my last internal radiation and I am still feeling the side effects. The nausousness is alot better but sneaks up on me occasionally, the neuropathy (numbing of finger tips and toes) is still hanging around, and the tiredness is still here.

The doctors suggested I get a pap every 3 months for the first 2 years, then every 6 months for 3 years, then I can go back to my yearly exams.

 

ccfighter
Posts: 476
Joined: Jan 2012

Vernon,

congratulations on finishing treatment.  I wish you the best and hope your side effects from chemo resolve quickly.  Hugs.

AnnNYC
Posts: 27
Joined: Mar 2016

I read with great interest both of your stories.  I am concerned to hear that although I also have adenocarcinoma, no one has mentioned that it is less sensitive to radiation treatment.  I have received a 2nd opinion from a totally independent hospital and the 2nd dr also concurred that surgery is not advisable at this point since the lymph nodes came back positive for the same cancer.

I have therefore, one path forward, with chemo and external radiation slated to begin next week, internal radiation to begin in a few weeks if all goes well.  I have to admit, it's scary to hear about how difficult the internal radiation is for people.  5 weeks later and you are still exhausted? Did you have internal burns as some people describe?  Or resulting difficulties with urinary or bowel functions?  

If you could share any of experiences and advise for getting through the chemoradiation, I would really appreciate it.  Thank you, and wishing you both all the best to be free and remain free of this disease.

ccfighter
Posts: 476
Joined: Jan 2012

Don't let me scare you.  Though some studies have suggested adeno to possibly be less radiation sensitive, it has not been proven and a lot of doctors and studies disagree. I'm glad that you got a second opinion and hope you are comfortable with your treatment plan.

i had adjuvant chemo radiation and got through it all with little side effects or discomfort.  Cisplatin makes everything taste bad, especially water, but force yourself to stay hydrated.  Drink lots of liquids.  Go to radiation with a full bladder which helps protect it against damage.  Talk to your doctors if something comes up.  They usually have something that will make you more comfortable.  

Good luck with treatment!  Keep us updated and let us know if you have any questions.  Hugs.

AnnNYC
Posts: 27
Joined: Mar 2016

I start radiation tomorrow so will remember the full bladder, though it is painful to do so right now with this tumor.  Chemo also slated to start this week (cisplatin) so I'm sad to hear that even water will taste bad!  As silly as this sounds, water is one of my favorite items!  I drink quite a bit now so hopefully I can keep that up.  I'm encouraged to hear that you did not have terrible side effects.  Are you within the time frame yet for long-term effects, or have you been spared those as well?  Every bit of good experiences I hear is very encouraging!

 

ccfighter
Posts: 476
Joined: Jan 2012

Good luck.  You will do great.  The only long term side effect I have is occasional small bowel obstructions.  I am currently four years post radiation and have no other bowel or bladder problems.  I do have a shortened vagina but that is from surgery, they took the top 1/3.  Otherwise, I am doing great.  You will do great too.  Hugs.

EmmaEmerson's picture
EmmaEmerson
Posts: 7
Joined: Oct 2016

I am glad I found this site and joined. It is good reading similar stories. I hope everyone heals. (hugs)

emma

AnnNYC
Posts: 27
Joined: Mar 2016

I've learned from this board how important it is to circle back and share GOOD news when you can.  Thank you to the members here who shared their stories and answered my questions from April, which seems like a lifetime ago.  

The good news is that as of September 2016, I have 'no evidence of disease'.  What a miracle, a happy time, and what emotions I shared with my family and friends who carried me through those difficult months.  And after some celebration, now I turn to the task of staying healthy so I can have a long life with my husband and children.

I completed chemo (Cisplatin), external radiation to my entire pelvic area, and internal radiation to my cervix and uterus.  I learned about things that helped me along the way, and I'm still reading and learning every day to become more educated about how to keep the cancer away.  There is so much we can do to help our bodies fight!  I'm very encouraged to have read about your good outcomes above, and I pray that you are all continuing to enjoy good health!  Please let me know how you are doing when you can, even if it is to share difficult news.  I'm very grateful to have had this board for support and information and I hope I can do that for others going forward.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2802
Joined: Mar 2013

Great news, Ann!  May you continue to be cancer free.

ccfighter
Posts: 476
Joined: Jan 2012

Congratulations!!!

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