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How did you know you had a recurrence?

NoTimeForCancer
Posts: 402
Joined: Mar 2013

Ladies, for all of you out there who have had to deal with this, how did you find the cancer had reoccurred?  I was fortunate to find my UPSC early at Stage 1A, but every now and then those little thoughts will creep in to my head and I have no idea what I should be looking for.  I get the blood draw for CA125 and the physical exam. (I am still on the quarterly rotation).  I don't get CT's, only a total of 3 (one pre-surgery, one pre-radiation planning, one post treatment).  Honestly I think I have bored my gyn/onc. 

So I ask my warrior sisters:

How did you know or find out you had a recurrence?  CTs?  Lumps?  Bumps?  CA125 (which we know is really not a good indicator)? 

I know I am not the only one out here, I have read some of the other women's stories. 

Thank you in advance for all you share.  I never would have made it through without all of you.  No one else understands this journey better than you.

ConnieSW's picture
ConnieSW
Posts: 539
Joined: Jun 2012

My diagnosis and current follow up is identical to yours.  I will be 2 years post chemo in August.

 

i am cureous as to why you had 25 external radiatin treatments.  I just had brachytherapy.

sunflash's picture
sunflash
Posts: 144
Joined: Aug 2011

I'll be  interested to hear the responses to this question. I'm 3 years out.....and have just progressed to four month follow ups instead of three.

I don't get scans either, although my doctor has told me she'd order one if I felt the need to have one. 

My feeling is the less radiation I'm exposed to the better......so no scans other than my post hysterectomy for me (at least so far)

My doctor said I'd have symptoms before anything would show up on a CT scan. Soooo, also wondering about the others here.  

nancibee's picture
nancibee
Posts: 48
Joined: Sep 2012

I am two years out from surgery as of May and on Friday graduated to 6-month follow-up. When I was a Kaiser patient, my Gyn/Onc didn't do scans - just CA 125 and exam. She told me the same thing - symptoms before anything would show on a scan. She told me she would order one if I wanted and felt so stressed by not having one that it could affect my health. I agree with you about the radiation so I told her maybe every couple of years but then I switched insurance and doctors.

Now I am at UCSF Helen Diller Comprehensive Cancer Care and since I was new, my doctor wanted a scan. I agreed because my CA-125 had doubled from Kaiser results but it turned out most likely due to a urinary tract infection and the fact that I used a non-UCSF lab in the John Muir network that even the John Muir doctors think is incompetent. But I paid for the CT scan and had UCSF do the CA 125 which was the lowest result ever.

 

HellieC
Posts: 425
Joined: Nov 2010

Well, I guess I'm an expert on recurrence, as I'm currently dealing with my 4th (all have been in the pelvis)!  First one started with discharge/bleeding (treated with external radiotherapy).  2.5 years later, second recurrence in same place also heralded with discharge/bleeding (treated with surgery/chemo).  Third recurrence started with annoying pain in left pelvis and down sciatic nerve and was confirmed by MRI scan (treated with Letrozole hormone therapy).  Fouth (current) recurrence also started with similar pain and was confirmed by MRI scan. Currently being treated with progesterone and I am hoping to go forward for Cyberknife radiotherapy in the next couple of months. I guess we're all different and, with our history, any pain, discomfort, discharge etc which lasts more than a couple of weeks really should be checked out.  I'm of the "catch it early and knock it down" school of thought! 
Kindest wishes
Helen

Kaleena's picture
Kaleena
Posts: 1015
Joined: Nov 2009

This is a tough question.  First of all, like others have indicated, everyone is different.   You really have to know your body signals to start with.  Don't go with those rash spur of the moment feelings, but the other ones that you don't talk about.   Even before my diagnosis, I knew something was wrong, very wrong.  I went for over a year to find out what it was and had different tests (colonoscopy, laparscopy) and it was only determined that I had endometriosis and needed a complete hysterectomy.  After the hysterectomy, it was found I had Endometrial Adenocarcinoma Grade 2, Stage 3a.   Then for my recurrence 4 years later, I started to complain (like Hellie) about the left hip area and sciatic pain down that leg.  Most of the CT scans, PET Scan and an MRI at the time came back within the normal range. I kept complaining of pain near my rectal area.  Finally, a biopsy was done and that confirmed a recurrence (2009). 

I am now experiencing different things and have been getting tested.  After a most recent CT, they did see that one of my tumors grew from 2.7 cm to 6 cm.   I had that biopsied and it was considered "connective tissues - no maligancy".  I am also experiencing some swollen lymph nodes in my neck (off and on) and I have been experiencing left eye problems (although the eye doctor has indicated everything is well).   I also had a brain MRI/MRA in November of 2011 which they didn't find anything of any significance and I was told I had a chronic sinus condition.

My last two PAP smears have been "Abnormal" and the latest one was also "HPV positive".  But the doctor's don't seem alarmed about this but I don't think its normal and then why do they do the tests anyway?

Lately, I have been getting dizzy and some headaches off and on along with pressure in my left eye and a foggy feeling. I do have an appointment with my oncologist and the genetic counseling the 1st of July.  Also, since I have been on prescription of Vitamin D due to deficiency, a lot of my pain in my hip area has disappated.  

I decided to keep a log of all my issues.  Also, I have mentioned my symptoms to my husband so he knows how I am feeling.

I also check my charts because sometime the intake person does not put down the right information.  I also ask for certain tests if it really is on my mind.

Don't ever think that you bore your gyn/onc.  By the way, what do you think should be done?

My best to you,

Kathy

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Must agree with Kathy....YOU KOW YOUR OWN BODY BEST!!!  I've been true on this one and do know when things are off.  In my case a year ago my CA125 started to go up a bit over a 6-month period.  Not much, but from 4-11-17...then doc did a CT and found spots on lungs.  Said too small to even worry about but he'd monitor.  After the next 6 month checkup did another chest CT and found a few more spots...yes very small.  Let it go again and told me he'd watch but wasn't concerned. 

A month later I noticed on the left side of my neck an enlarged area which turned out to be a lymph node (called supraclavicular node).  Met with a thyroid specialist whom had me do a PET...confirmed what he thought recurrence.  This had to be confirmed via a needle biopsy....yes for sure cancer!!

That's my story, but know your body and if ANYTHING FEELS OUT OF SORT, get into your doc or call them.  Now don't be overly crazed with every little bump and pain, then one's truly obsessed for no reason.  Our bodies do change over the years with aging, as to why many things are due to simply getting old.  One thing my oncologist told me, if I have pain and it moves around and on/off, not to worry.  But....if it stays in the same area for approx 2 weeks, come see him.  FYI I followed this with the neck node.

Try to enjoy each day as life is truly great!!

Hugs,

Jan

 

Ro10's picture
Ro10
Posts: 1358
Joined: Jan 2009

I never do things the way others do.  I have never had any symptoms before my diagnosis of UPSC Stage  3-C.  Abnormal cells were found on a routine PAP.   I have never had any symptoms with my recurrences!  My  CA -125 increases as soon as I go off chemo.  I have never felt any differently when it is time for me to go back on chemo.  The CAT scan shows increases in multiple lymph nodes.  I am fortunate that the recurrences have always been in the lymph nodes, but I never feel any lumps, swelling or discomfort anywhere.  

I will have a CAT scan in July to see if it is time for more chemo.  My CA 125 is 1441 now.  It has been 25 months since my last chemo.    My CA125 went to 1500  in 18 months when I needed chemo the second time.  And to 3200 in only 7 months when I needed chemo the third time.  So we are all different, and I don't believe that you will always feel something when you have a recurrence.  Just speaking from personal experience.  Hope I don't discourage any one.  It is important to keep up with your recommended check ups, and find joy in each day.   In peace and caring.  

Abbycat2
Posts: 52
Joined: Feb 2014

Hi, Kathy,

I read your post and wondered if some of your symptoms could be caused by medications, perhaps for your chronic sinus condition?  The pressure in your eye and the headaches may be associated with your sinus problem itself.  I know it is frightening to have symptoms of anything, because of our history with cancer. I wake up everyday wondering what will happen next with my health, as I imagine we all do.  In spite of your recurrence, you have done remarkably well over the years and I sincerely hope that your current symptoms are not caused by cancer but something else that is easily treated.   Since I was diagnosed with UPSC stage 3a last November, I have experienced dizzyness and I think it is because of some of the medications I had to take.   Just know that I am praying for good results for you with all the testing you are having now.

Best Wishes,

Cathy 

pipscout
Posts: 22
Joined: Jul 2010

Hello, the CA125 was never a good marker for me, so I was having scans. About a year from the end of initial treatment, I had a scan which showed recurrence (in abdominal wall). I didn't feel any symptoms. However, a few months later the tumors increased in size (not responding to hormonal therapy) and I could feel some funny twinges and things in my abdomen. 

I'm now 2 and a half years past my recurrence. The last set of tough chemo I did ended in November, and the tumors shrunk and have been holding steady. I currently do a maintenance chemo of Avastin which isn't too tough. 

A few months ago I lost a family member unexpectedly and was going through a tough emotional time. I was having a CT at the time and was full of feelings of doom and gloom. I was sure it would come back showing lots of growth, but it didn't. That helped me to realize that fears are not facts. 

I remember I was petrified when I first got news of my recurrence, and the statistics are pretty sobering. But I have been going along okay, and feeling pretty good when I recover from tougher chemos. It will be a chronic issue for me, but I'm hoping to get quite a few more good years in.

NoTimeForCancer
Posts: 402
Joined: Mar 2013

Thank you warriors.  My heart is touched by your strength, knowledge, and willingness to share. 

You are in my prayers always.

SUNGRANNY
Posts: 74
Joined: Dec 2012

Pipscout,

How perceptive to realize that your recent losses were driving fears of scan results, not "body wisdom."  Tricky isn't it. Sometimes I think we do have body wisdom and get a sense of what is going on in our bodies, but then again fears and emotions can cloud that wisdom.

Here's to many more good years for you,

Sara

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