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Recurrence After Only 7 Months

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

In March I had a total abdominal hysterectomy -- was diagnosed with Stage 1b uterine cancer. Pathology report showed 16 lymph nodes tested and all clean. No spread to ovaries, cervix, fallopian tubes. No further treatment was recommended -- only 3 month follow-ups. At my last follow-up on October 17, all seemed to go well. I mentioned to gyn-onc. that I had something strange happening -- there was a foul odor and discharge from my belly button for the last few weeks. I had been using antibiotic ointment which took care of the odor but discharge was still here. Doctor thought it might be some granulation tissue and treated me with silver nitrate. As a precaution, he took a biopsy but wasn't expecting anything bad. He called me a week later and shattered my world -- the cancer was back. I was such a mess cause I couldn't believe was he was saying. This wasn't supposed to happen with Stage 1b. Had a PET/CT and get results tomorrow. Expecting it to light up like a Xmas tree! So scared about what doctor will tell me. Unfortunately, I've been making myself more anxious by reading stuff on internet about recurrences. Husband is ready to throw my computer out the window. Looking for positive info but everything is so negative when cancer doesn't come back in vaginal cuff or pelvic area. Can't imagine how cancer is in belly button. Plan so far is more surgery to remove offending tissue and then 30 radiation treatments. Of course all that could change with PET scan results.

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

Noodles,

I, too, have a reoccurrence - after less than 3 months!  Total hysterectomy and removal of omentum but no nodes.  Surgeon said microscopic cells that could not be "captured" would be taken care of by chemo.  6 rounds of Taxol/Carbo and we're back to same-old-same-old.  The only comment was that I presented at Stage IV (c).  My port was installed for the second round.  I still carry the reminder (hematomas) of being stuck in early June 2012.  The port makes life so much easier and safer.  The internet is a frightening place is much of the information is old and, like the online encyclopedia starting with a W, information can be adulterated by ANYONE!  Just started a new protocol to include Gemzar.  Went through it pretty much the same way I went through my early chemo without any side effects.  Actually the Taxol made me lose my hair and gave me flu symptoms for a day or two but nothing else.  Planning a second opinion (or third if you count the onc surgeon) at Duke in about 10 days. 

My advice - breathe deep.  There is much available for you.  Send your intellect on vacation.  Go to your happy place.  I know it sounds strange but if you are all wired up and tense, it is more harm than good.  You had some wonderful thoughts by the others on this group.  My thoughts for you are just as they are for me - be strong and love everyone around you and don't obscess.

Roena

noodles886's picture
noodles886
Posts: 25
Joined: Oct 2011

Haven't posted here in quite a while.  You can see my original postings at beginning of this thread.  I started a clinical trial in November 2011 and was doing well -- most the lesions I had either disappeared or shrunk.  I was on xabepolene, carboplatin, and avastin.  After 6 treatments I went on maintenace with only avastin.  In August 2012, a new lesion appeared and I was told I could no longer continue with trial.  Oncologist said I needed to take a break from chemo to build up my immune system and hopefully make my neuropathy better.  In October 2012 I had another CT scan whiich showed minimal growth so nothing was scheduled until December 2012.  That CT scan showed more growth and oncologist said I have more than when I started clinical trial.  I start another round of chemo (taxotere and carbo) on January 10.  I am losing hope and cry quite a bit.  I know some of you have been through many recurrences and I don't kinow how you cope.  Any advice would be greatly appreciated.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Boy, you hit the nail right on the head.  Staying hopeful is a real challenge.  And without it we essentially give up.  I wish I had a good answer for that. 

I'm dealing with 2nd recurrence and will know more after my PET scan next week.  It is very discouraging to fight and endure treatment and not get better.  My nurse kind of shocked me recently when she commented that maybe staying where I am now is the best we will be able to do.  Wow. While I'm shooting for NED they are giving up on that!!!!

I try to find solace in fact that it is still in lymph system and not organs.  Not sure how good that really is.  I wonder if recent throat problems are related to cancer (feelings of obstruction and bloody sputum - I see ENT Monday) - boy the mind can take me places!!

All I can do is give you big hug and take your hand virtually and ask you to continue on with me, Noodles.  Hang in there.  I do try to visualize my body fighting cancer successfully and I see a clean scan in my future (woo hoo).   Let's continue on together.  I'm so glad you wrote and gave the update.  Best wishes as you continue on.  Pleae keep us posted.  We are here for you - through thick and thin. 

Big virtual hugs, Mary Ann

NorahS
Posts: 93
Joined: Dec 2012

...because there's another 'old' post on the front page (resurrected by the spammer)  titled "PET Scan results - Several nodes lit up again!" which Mary Ann started about a year ago. She dealt with that reoccurance and will deal with this one too!  

I know it's very hard not to overthink and overanalyse things when speed bumps on the road to NED appear, but I know you're both equal to the challenge.  

A big hug for you both, 

SharoN 

 

 

 

 

HellieC
Posts: 428
Joined: Nov 2010

Please don't lose hope.  I think I know how you are probably feeling.  I, too, get regular waves of panic about my situation, but while I feel OK, I try to push it away in order to fight on.  When the panic hits, I sit myself down and say "is the end going to come today?".  Obviously, as I feel well, the answer is "no" (unless I get hit by the proverbial bus!).  So I tell myself that there's no point in worrying about a situation that hasn't arisen yet and I stand up and set about coping with the day.  In those dark days, I put all my concentration into the task in hand and don' t think beyond it.  Gradually, the panic subsides and I'll get a few "normal" days before it happens again. That's my way of coping with this beast - it has taken so much from me,  physically, and I intend to keep it's claws away from my mind as long as I can. I figure that my days may be numbered, but I want to enjoy them as much as I can.

By the way - I am in treatment for my 3rd recurrence.  Had hysterectomy in 2001 for suspected cancer, but none was found on pathology, so was told cancer free and all clear.  First recurrence (7 years later) at vaginal vault treatment with radiotherapy, 2nd recurrence (2.5 years later) in pelvis treated with debulking surgery and 6 cycles of carbo/taxol.  Third recurrence in pelvis (18 months later) mostly on left pelvic sidewall considered inoperable and incurable.  I am being treated with Letrozole (Femara) which is an aromatase inhibitor which stops the body producing oestrogen and "starves" the tumour.  (I have adenocarcinoma which is both oestrogen and progesterone receptor positive). So far, one tumour has shrunk and is no longer visible and the other shows some signs of shrinkage.  I know that this will eventually come back, but I hope to be here for a good while longer.  I understand that it is possible for these hormone therapies to work for several years and when one stops sometimes a different one will work.  So that's the path I'm going to tread as it is such an easy treatment for me with, so far, few side effects.  I'm not quite sure what kind of tumour you have, but it might be worth getting it tested for hormone receptors to see if this is a possible treatment for you?

Kindest wishes

Helen

SuziDezi's picture
SuziDezi
Posts: 25
Joined: Dec 2009

Thanks to Marianne ad Hellie who, along with Ro, are mainstays of this group. I too am dealing with a second recurrence - taxol/carbo again. This time it involves weekly infusions for 3 weeks and then 1 week off. Since it is my 3rd round of these chemicals my body seems to be in a much more rebellios mode - and the schedule doesn't give it much time to recuperate. Finally we took the decision to delay the next 2 infusions (after 10 weekly ones, meaning 3 full doses) so I will be strong enough to have a CT scan this Friday and then see the docs the following Tuesday. It is easy to get discouraged. But then there is a better day, the sun breaks through the winter clouds and hope returns - battered but still there. I will spend the week regaining strength, perhaps even seeing a movie and/or having my nails done.

Thanks ladies of this sisterhood for sharing stories - they keep me going. And good luck to each and every one of us. Big hugs to all.

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

Sorry to hear yet that the chemo is taking such a toll on you.  I know my third round of chemo was harder for me.  Hope your CAT scan shows that the chemo is working for you.   Enjoy your chemo break.  Glad you will be doing something you enjoy.  In peace and caring.

GabbyMaude's picture
GabbyMaude
Posts: 4
Joined: Dec 2009

Hi noodles - recurrent cancer is tough - I was diagnosed with stage 4 uterine/endometrial cancer three years ago.  I am about to enter treatment for my 3rd recurrence, but am still doing well.  I am 68 and still working full time - so happy I can continue my work as a community college reading specialist!  My doctor this time gave me three options for treatment - none sounds lovely.  The first, adriamycin, causes heart problems.  Megase and Tamoxifin cause weight gain and possible blood clots (I've already had a blood clot and am on blood thinners for three years!  Bruise city!)  I will probably go with the third option - taxol.  I have had 18 moonths of taxol in varying strengths - my cancer doesn't like it, andit has held the little devils at bay.  Be sure to check out all options and side effects - I had readiation for a recurrence in lymph nodes of my neck - Intensity Modulated Radiation plus hydrotherapy.  While the 45 treatments (daily for 9 weeks) did cause those nodes to disappear, I now have a new neck node plus others in the tissue behind my heart.  If your doc advises IMRT, be sure your insurance will pay.  The hospital didn't check for me, and I had to fight for 18 months through three appeals before Unicare paid.  Best of luck and hang in there!  Our attitude is the important component here! 

Double Whammy's picture
Double Whammy
Posts: 2268
Joined: Jun 2010

Please keep doing what you need to so you can keep doing what you want to.  My hopes and prayers are with you all as you continue your struggles. 

Suzanne

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