recurring cervical cancer

I want to know if there is anybody who has had recurring cervical cancer and if so, where has it recurred and how are you being treated?

I was diagnosed stage 1b in May 2003 and my cervical cancer recurred several times. I had my appendix, gallbladder & full hysterectomy done. I'm on my 5th round of chemo and have become chemo resistant. My cancer is now in my abdomen spreading into my spleen and right kidney but not in any area. I am waiting to get into a clinical trial at Dana Farber in Boston and also trying to get the drug Avastin if I can and will somehow. It is not yet FDA approved for cervical cancer but shows some promising results. Lisa

 

On 4/7/2009 Survivor4times wrote:

I was diagnosed stage 1b in May 2003 and my cervical cancer recurred several times. I had my appendix, gallbladder & full hysterectomy done. I'm on my 5th round of chemo and have become chemo resistant. My cancer is now in my abdomen spreading into my spleen and right kidney but not in any area. I am waiting to get into a clinical trial at Dana Farber in Boston and also trying to get the drug Avastin if I can and will somehow. It is not yet FDA approved for cervical cancer but shows some promising results. Lisa

I was very surprised when my cancer recurred this past August.  They found a tumor near my rectum.  I had surgery to remove that and then in December they found two more tumors, one in my neck and the other in my pelvic area.  I am on my 5th treatment of chemo and my PET Scan shows the cancer is gone.  I know my doctor told me my cancer is not cureable but it is treatable.  When you say chemo resistant, you mean you can't have anymore chemo?  I wish you the best and pray that you get into that clinical trial.  

 

 

On 4/7/2009 newyork wrote:

 

On 4/7/2009 Survivor4times wrote:

I was diagnosed stage 1b in May 2003 and my cervical cancer recurred several times. I had my appendix, gallbladder & full hysterectomy done. I'm on my 5th round of chemo and have become chemo resistant. My cancer is now in my abdomen spreading into my spleen and right kidney but not in any area. I am waiting to get into a clinical trial at Dana Farber in Boston and also trying to get the drug Avastin if I can and will somehow. It is not yet FDA approved for cervical cancer but shows some promising results. Lisa

I was very surprised when my cancer recurred this past August.  They found a tumor near my rectum.  I had surgery to remove that and then in December they found two more tumors, one in my neck and the other in my pelvic area.  I am on my 5th treatment of chemo and my PET Scan shows the cancer is gone.  I know my doctor told me my cancer is not cureable but it is treatable.  When you say chemo resistant, you mean you can't have anymore chemo?  I wish you the best and pray that you get into that clinical trial.  

Best of luck. I am havina a radical hysto. on May 11th My doc. says she doesn't know yet if i need cemo or radiation. I don't understand why she wouldn't so it can help to prevent it from coming back

 

 

 

On 4/21/2009 kristin1973 wrote:

 

On 4/7/2009 newyork wrote:

 

On 4/7/2009 Survivor4times wrote:

I was diagnosed stage 1b in May 2003 and my cervical cancer recurred several times. I had my appendix, gallbladder & full hysterectomy done. I'm on my 5th round of chemo and have become chemo resistant. My cancer is now in my abdomen spreading into my spleen and right kidney but not in any area. I am waiting to get into a clinical trial at Dana Farber in Boston and also trying to get the drug Avastin if I can and will somehow. It is not yet FDA approved for cervical cancer but shows some promising results. Lisa

I was very surprised when my cancer recurred this past August.  They found a tumor near my rectum.  I had surgery to remove that and then in December they found two more tumors, one in my neck and the other in my pelvic area.  I am on my 5th treatment of chemo and my PET Scan shows the cancer is gone.  I know my doctor told me my cancer is not cureable but it is treatable.  When you say chemo resistant, you mean you can't have anymore chemo?  I wish you the best and pray that you get into that clinical trial.  

Best of luck. I am havina a radical hysto. on May 11th My doc. says she doesn't know yet if i need cemo or radiation. I don't understand why she wouldn't so it can help to prevent it from coming back

 

That is strange that she can't tell you whether or not you need chemo and or radiation.  I wish you best of health. Karen

 

 

 

On 4/7/2009 Survivor4times wrote:

I was diagnosed stage 1b in May 2003 and my cervical cancer recurred several times. I had my appendix, gallbladder & full hysterectomy done. I'm on my 5th round of chemo and have become chemo resistant. My cancer is now in my abdomen spreading into my spleen and right kidney but not in any area. I am waiting to get into a clinical trial at Dana Farber in Boston and also trying to get the drug Avastin if I can and will somehow. It is not yet FDA approved for cervical cancer but shows some promising results. Lisa

Hello, Wow! 4 time survivor really shows what a strong women you must be! My mom just got diagnosed with stage 1B2 cervical cancer. I am really scared and worried. She is refusing to get treatment and I don't know what to do. I would like to talk to you in more detail about undergoing radio/chemo therapy to get feedback and information so I can be more knowledgable and help my mom take this important step. My mom's argument is "what is the point of doing all this therapy if there is a chance of reoccurance." Is this normal that you have had so many reoccurances at sucha low stage? Any insight would be greatly appreciated. Thanks, Seda

Hi,

 I'm new to this forum.  I am a 46-year old woman with recurrent cervical cancer as well.  I was diagnosed back in June 2006 with Stage 1B1, and had a radical hysterectomy plus pelvic radiation for good measure.  Within 6 months I noticed a lump on my hip which the doctors dismissed.  At my insistence I had a scan and two more tumors were found:  the hip one I felt, plus another one in my groin.  I had surgery to remove then and then was able to have additional shaped radiation in conjunction with cisplatin followed by four additional rounds of chemo only with cisplatin and topotecan.  Just when I thought that should have mopped things up, by Christmas of 2007, I left another tumor near my rectum.  That one was deep and adherent to the pelvic wall.  My oncologist is a great surgeon and managed to excise it, removed 10 inches of recto-sigmoid colon that was adjacent and used a tube with a water filled bladder to hold the fresh colon out of the way while I received brachytherapy (more radiation).  Unfortunately, I had to have a temporary ileostomy which was reversed four months later.  All the radiation damage has made my ureters quite friable and I ended up with leaks that eventually healed although I must continue to have stents to keep them open.  Finally this March 2009, I ended up with another tumor on my abdomen that hurt and a scan turned up two tumors:  the one I felt, plus another that is a mirror image of the one I had by my rectum before.  This time, I opted to remove the abdominal tumor but leave the deep one in.  Had I had it removed, I would have ended up with a permanent ostomy and my rectum completely removed.  And additional radiation would prove problematic.  So we've decided to try different chemo and use the tumor as a measuring stick for effectiveness.  We're using Taxol and Avastin, however the insurance company denied the Avastin coverage.  I'm in the process of helping the doctor file an appeal but I'm not holding out much hope.  My husband wants to go ahead and pay for the Avastin regardless but I feel guilty spending money that I want to use to pay for my kid's education.

I'm supposed to have two more rounds of chemo with the Taxol and Avastin and then get a PET scan to see how the tumor is doing.  I'll try and repost with the results, probably in the August 2009 timeframe, as I'm sure folks would like to know if the Avastin is having any effect.

For those of you also trying to appeal Avastin coverage, here are some articles to use:

Monk BJ, Sill MW, Burger RA et al.

Phase II trial of bevacizumab in the treatment of persistent or recurrent squamous cell carcinoma of the cervix: a Gynecologic Oncology Group Study.

Journal of Clinical Oncology. 2009;27:1069-1074.

 

Monk BJ, Sill MW, Burger RA et al.

Phase II trial of bevacizumab in the treatment of persistent or recurrent squamous cell carcinoma of the cervix: a Gynecologic Oncology Group Study.

Journal of Clinical Oncology. 2009;27:1069-1074.

 

Kirshnansu S. Tewari and Bradley J. Monk

Recent Achievements and Future Developments in  Advanced and Recurrent Cervical Cancer:  Trials of the Gynecological Oncology Group

Seminars in Oncology, Vol. 36, No 2, April 2009, pp 170-180

 

Wright JD, Viviano D, Powell MA et al.

Bevacizumab Combination Therapy in Heavily Pretreated, Recurrent Cervical Cancer.

Gynecologic Oncology. 2006;103:489-493.

Keep the faith and stay strong!

Cindy

 

On 5/6/2009 sedalex1 wrote:

 

On 4/7/2009 Survivor4times wrote:

I was diagnosed stage 1b in May 2003 and my cervical cancer recurred several times. I had my appendix, gallbladder & full hysterectomy done. I'm on my 5th round of chemo and have become chemo resistant. My cancer is now in my abdomen spreading into my spleen and right kidney but not in any area. I am waiting to get into a clinical trial at Dana Farber in Boston and also trying to get the drug Avastin if I can and will somehow. It is not yet FDA approved for cervical cancer but shows some promising results. Lisa

 

Hello, Wow! 4 time survivor really shows what a strong women you must be! My mom just got diagnosed with stage 1B2 cervical cancer. I am really scared and worried. She is refusing to get treatment and I don't know what to do. I would like to talk to you in more detail about undergoing radio/chemo therapy to get feedback and information so I can be more knowledgable and help my mom take this important step. My mom's argument is "what is the point of doing all this therapy if there is a chance of reoccurance." Is this normal that you have had so many reoccurances at sucha low stage? Any insight would be greatly appreciated. Thanks, Seda

Seda,

 Your mom MUST get this treated, my Mom wasnt even aware she had cancer. SHe went to have her pap done and the results showed something odd, she was also gaining weight and very hormonal. Her Dr told her it was a hormone imbalance not to worry that ot was in no way cancerous and put her on hormone therapy and scheduled a checkup for 9 months later. What do hormones do to cancer? They feed it!

 This Dr was a JACKASS!!! Luckily he had a sub Dr when my mom went back in, she went in did another pap and check up and the Dr immediately scheduled for her to see a specialist in Denver. My mom had gone from pre-cancerous cells to 4th stage cervical cancer in 9 months. DId you know that Cervical cancer is one of the hardest cancers to be once it gets to such a progressed state? Not only that but because of how far her cancer had progressed she had to do experimental rounds of radiation, they put a radiation prong in her cervix for 14 hours. Later on down the road the FDA put a max of having the prong in a person for 45 min TOTAL in 15 min increments. My mom is now malnutritioned and has what is referred to as co-morbitity (many severe health problems) all relating back to that radiation treatment. And none of this would have happened if that Dr would have just sent of her results for a 2nd opinion. My mom has now been in remission for 8 years, she was given 20% odds of living. Now though, she is 46, disabled and has severe lymphodema in her left leg from all of this.

So tell your mom my moms story and ask her if she REALLY wants to refuse what will most likely be just a hysterectomy and Chemotherapy. And if she has to have radiation it will most likely be in small doses.  And even if she has to have all 3 of them, her chances of surviving are extremely high and her quality of life will be much better than if she waits and THEN decides she wants treatment.

GOOD LUCK!

I wanted to give an update.  (see my previous message in this thread).  I've now gone through three additional rounds of chemo and my latest PET scan shows NO SIGN of cancer!  I'm on Taxol and Avastin and it appears to have done the trick!  We're going to do three more additional rounds spaced at three weeks.

I did file an appeal with Anthem/Blue Cross when they denied coverage for the Avastin and they denied the appeal.  Now that I have this positive outcome, I will be filing an appeal with the California Independent Medical Review board.  Note:  the Avastin costs $8000/dose!