Recurrence stories

BluebirdOne

Ladies,

 Without a major symptom, how does one discover that they recur?  Those of you who have recurred, how did you discover it? CT, PET, physical symptoms? Bleeding?  Other? How soon after your last treatment did you recur?

I am curious because of the very different opinions about scans that we get from our medical teams. I had a CT scan three weeks after my last chemo and have another one scheduled at the six month mark. I am NED since October 2018, Stage 1a, UPSC with LVSI, diagnosed in July 2018. The recommendation I received for my situation is checkups every three months with blood work, add a CT scan every six months for three years. Annually after that. I don't know if that is just due to UPSC or LVSI or both. 

 Denise

 Also, when I went to for my 3 month checkup my NP told me that the 6 month mark is pretty crucial after finishing treatment as if the chemo or radiation was ineffective that is when any recurrence would start to show up. Which is why some may want to offer a CT at 6 months especially for the more aggressive UPSC. 

CheeseQueen57

Surveillance

3c, stage 3. My doc did CT scans every 3 months. 8 months after I finished frontline treatment I reoccurred in the peritoneal cavity ( no symptoms. Would not have known without CT scan). Treated with Megace, NED for 1 Year. Now following up with doc and labs every 3 months and getting CT scans every 6 months. 

Denise66

I’m stage 1b, grade 2. My doc

I’m stage 1b, grade 2. My doc is recommending scans of the chest, abdomen and pelvis at 6, 9 and 12 months.  I’m not sure after that.  I just a little over 7 months out from my surgery. It really just depends on your dOf and his/her protocol. 

Denise66

CheeseQueen57 said:

Surveillance

3c, stage 3. My doc did CT scans every 3 months. 8 months after I finished frontline treatment I reoccurred in the peritoneal cavity ( no symptoms. Would not have known without CT scan). Treated with Megace, NED for 1 Year. Now following up with doc and labs every 3 months and getting CT scans every 6 months. 

Wpile you please tell me what

Wpile you please tell me what you mean you reocrred in per Cavity?  was it a lymph node?  

Unknown

No scan, just 6 month checkups

My doctor has never done a scan, only one CA 125 blood test after first chemo.  My doctor only follows symptoms, says theres too much radiation in a CT scan to do unless you are showing symptoms.  So far, I just had my 6 month check up, all clear, afater almost 3 years.  I read a report last month that early treating cancer at the first sign via CT scan was no more beneficial  than waiting for symptoms.  Who knows, I only know I don't live my life waiting and worrying about what a scan may or may not show.  

CheeseQueen57

Denise66 said:

Wpile you please tell me what

Wpile you please tell me what you mean you reocrred in per Cavity?  was it a lymph node?  

Peritoneal

I had a little bit of ascites that tested positive for cancer and there were nodules (too small to measure) in the wall of my peritoneal cavity. 

Jairoldi

Scans

I'm still in every 3 months checkups. Similar to Donswife my Doc doesn't do scans unless there are symptoms. Prior to surgery I had  just xray and pelvic CT. After completion of treatment I had one CT from chest to pelvis to serve as my baseline.

Donna Faye

exam

Stage 1a UPSC - one year after surgery, chemo and bracky, lesion on vaginal wall. Found by pelvic exam.  More chemo and rads, internal and external. Badly scarred is why they want me to dilate but you can read my making decisions post and see why I stopped. CT every 3 months but may soon go to 6. Hope this helps.

Lulu7582

Pain was my symptom

I was originally Stage 1A, grade 2 with positive LVSI, but I developed hip and breast pain. I had mentioned the hip pain to the gyn/onc NP at the 3 month F/U and she dismissed it so I went to my usual gyn and she ordered the CT scan that showed the mets. 

My advice listen to your body and if you have a pain or symptom that worries you get it checked out. Be an advocate for your care. We only have one life! However in my case my cancer is very unusual so don't look at me as a typical case. xo

BluebirdOne

Lulu7582 said:

Pain was my symptom

I was originally Stage 1A, grade 2 with positive LVSI, but I developed hip and breast pain. I had mentioned the hip pain to the gyn/onc NP at the 3 month F/U and she dismissed it so I went to my usual gyn and she ordered the CT scan that showed the mets. 

My advice listen to your body and if you have a pain or symptom that worries you get it checked out. Be an advocate for your care. We only have one life! However in my case my cancer is very unusual so don't look at me as a typical case. xo

Lulu7582 Thanks for sharing.

So how soon after surgery did you recur? Did you have any chemo or radiation prior to recurring? Pain was your first sign that the cancer might have come back? I am really curious as to everyone's story as I think having this information will give us knowledge of other's progression and how the recurrence was actually diagnosed. Especially given that some medical teams do not recommend regular scans, some do. 

xxoo

Denise 

 

BluebirdOne

Donna Faye said:

exam

Stage 1a UPSC - one year after surgery, chemo and bracky, lesion on vaginal wall. Found by pelvic exam.  More chemo and rads, internal and external. Badly scarred is why they want me to dilate but you can read my making decisions post and see why I stopped. CT every 3 months but may soon go to 6. Hope this helps.

Aha.

Donna Faye, thanks for sharing. Now I see why the dilator was so important to you. I think you made the right decision stopping the dilator and my heart goes out to you for having to endure even more pain after the initial dx. 

xxoo

Denise 

MAbound

Instincts

I'm still NED, but what has struck me since I've been on this board is how many who have had recurrences seem to have a sense that something is wrong before it's confirmed. The take away is to listen to your inner voice when it's talking to you and insist on recurrence being ruled out when that happens. It's not in your head!

SF73

MAbound said:

Instincts

I'm still NED, but what has struck me since I've been on this board is how many who have had recurrences seem to have a sense that something is wrong before it's confirmed. The take away is to listen to your inner voice when it's talking to you and insist on recurrence being ruled out when that happens. It's not in your head!

As a hypochondriac I am going

As a hypochondriac I am going to disagree. I actually think there is something wrong with me every other week but had one recurrence so far. Despite my instincts being wrong sooo many times I still rush to my oncologist everytine I suspect something is wrong. The cost of false negative is much higher than false positive. Hence I guess I would end up with the same recommendation, MABound. Don’t ignore your inner voice.

Lulu7582

BluebirdOne said:

Lulu7582 Thanks for sharing.

So how soon after surgery did you recur? Did you have any chemo or radiation prior to recurring? Pain was your first sign that the cancer might have come back? I am really curious as to everyone's story as I think having this information will give us knowledge of other's progression and how the recurrence was actually diagnosed. Especially given that some medical teams do not recommend regular scans, some do. 

xxoo

Denise 

 

Unfortunately

Because my path report was Stage 1A, Grade 2 ....27 negative nodes and negative pelvic wash, I was told no further treatment other than the surgery. So yes pain was my first symptom and it was 4 months later I found out it had spread to my lungs, ribs and pelvic bones.

To this day I wonder if it had already spread prior to the surgery even though my present oncologists don't think it had..... but I am sure she isn't going to say yes .....otherwise I could go after the original surgeon with a lawsuit!!! although at this stage what good would it do...doesn't change my outcomes. My husband did ask the original surgeon if they would do a CT or PET prior to the surgery and he was adamant that I didn't need it because his eyes would be checking my organs during surgery!!!  He had a big ego!!  

BluebirdOne

Lulu7582 said:

Unfortunately

Because my path report was Stage 1A, Grade 2 ....27 negative nodes and negative pelvic wash, I was told no further treatment other than the surgery. So yes pain was my first symptom and it was 4 months later I found out it had spread to my lungs, ribs and pelvic bones.

To this day I wonder if it had already spread prior to the surgery even though my present oncologists don't think it had..... but I am sure she isn't going to say yes .....otherwise I could go after the original surgeon with a lawsuit!!! although at this stage what good would it do...doesn't change my outcomes. My husband did ask the original surgeon if they would do a CT or PET prior to the surgery and he was adamant that I didn't need it because his eyes would be checking my organs during surgery!!!  He had a big ego!!  

Lulu7582

Dear Lulu,  I am so sorry that you have had to endure this recurrence. I can see how you would think that it might have spread prior to surgery as pain and that kind of spread in only four months seems unusual to say the least. Your surgeon sounds like an arrogant SOB, he didn't have exray vision to see into organs. Thanks for sharing and I wish you the best with your treatment. I think all of our stories are relevant and gives everyone a sense of the different treatments, outcomes and life altering decisions. Big hugs!

Denise 

BluebirdOne

SF73 said:

As a hypochondriac I am going

As a hypochondriac I am going to disagree. I actually think there is something wrong with me every other week but had one recurrence so far. Despite my instincts being wrong sooo many times I still rush to my oncologist everytine I suspect something is wrong. The cost of false negative is much higher than false positive. Hence I guess I would end up with the same recommendation, MABound. Don’t ignore your inner voice.

How can we not suspect something is wrong?

While I am not a hypochondriac, I have suffered from osteo arthritis for 25 years, hands, wrists, shoulder, spine, ankles, and now my knees, so I have many joint and muscular aches and pains, not to mention bursitis a number of times. My father-in-law died from lung cancer because he dismissed the pain as just more due to a life long bad back. So I worry about cancer pain being masked by my normal aches. And I really worry that the docs will dismiss my pain as just arthritis or nothing at all. I had leg pain prior to my last checkup which they thought might have been a blood clot, luckily it was nothing. I also now have pain in my left lower back about where the kidneys are but they dismissed it as probably nothing. My inner voice is attuned to any pain but I agree that checking things out might be the thing that saves your life.  Thanks for contributing. 

 

Denise 

EZLiving66

After two years my oncologist

After two years my oncologist/gynecologist dismissed me from his care and told me to find a GP or gynecologist to do the check-ups which he said only had to be done every six months. I was Stage II, UPSC. I just found a DO here in Florida who said he felt comfortable looking for signs of recurrence. He ran a full blood panel which came back showing my triglycerides were high (the story of my life) but everything else was well within the normal range. He said to keep taking the Metformin, and the low dose blood pressure and cholesterol meds along with the vitamins and fish oil I take every day. He checked my lymph nodes just like my oncologist's PA did and said he agreed with the oncologist that no scans be done unless there was a symptom. I told him I had my bones x-rayed the previous July because of a sciatic nerve problem and the x-ray showed no mets just several compressed discs. He told me it was good to have that checked out since it could have been a return of the cancer. He also thought the pain in my left leg was caused by the disc problem, not the neuropathy. He wanted me to try Gabapentin again for the neuropathy and so far, I'm not having any side effects but I still take my Nyquil too. 

I don't worry much anymore about the cancer coming back. I know my chances are pretty good that it will at some point. But I've decided to live like I'm going to live forever and just not worry about dying. My husband and I sat down and budgeted out the money we have and with our incomes, it should last us until we're 84 or 85. Then we'd have to sell some real estate. I didn't tell him that I doubt I'll live that long but I just don't worry about it anymore. Life is such a crapshoot - my 40-year-old PA died of brain cancer within three weeks of discovering it. When I saw her on that late December day in 2017, she had no idea that in a month, she'd be dead. She was a runner, a vegetarian and completely healthy. I was a fat old lady with cancer eating mint ice cream when I read her obituary. I'm still here and she's not!

I have nothing left on my bucket list but am having the time of my life, here in our retirement community in Florida. My best buddy is 83 (I'm 66). Last night we were planning a fishing trip out on the gulf! Every day I have something going on! I miss the kids and grandkids but they have their own lives. If I died tomorrow, I'd be ok with that too. 

Love,

Eldri

derMaus

My Two Cents Worth

This is something I have strong opinions about which may differ from many here. I've had 4 scans in the last 2.5 years: an initial pre-surgery CT and 3 post-chemo PET's. I feel that scans are a crucial part of survivorship for those of us with advanced, or Grade III, cancers (I'm both). My first PET identified inoperable mets in my retroperitoneal lymph nodes, the largest of them @ 3.5 cm. I had no physical symptoms and, given their location, would not have had until they were very, very large - or had metastasized further.  I'm chemo resistant so the stakes were very high, however, because they were identified early - before my first round of external radiation - my radiation onc was able to expand the field to cover them in the initial go-round. When that failed to completely kill them, CyberKnife was employed to finish them off. My second round of cancer (intestinal) was similarly asymptomatic. A 'routine' PET located an 8 cm mass under my psoas muscle, which quickly blew up to 14 cm and led to all kinds of problems. I'm still trying to get rid of that damn thing but at least it's down to 3 cm now and I'll shortly have more CyberKnife to - pray god! - get rid of it. I truly believe that, had the original mets not been caught so quickly, I'd be in very bad shape, or possibly dead, by now. So, for me, I accept the tradeoff between the radiation of scans vs. future cancer risk. Certainly it's a decision we all have to make for ourselves, and I thank you for starting this dialogue. 

Soup52

I’m with you Dermaus, I was

I’m with you Dermaus, I was grade 3 stage 3C clear cell.Yes, I had scans before surgery, alsofor radiation, after chemo was finished and once a year. It makes me feel better to have the scans. I also insisted on a colonoscopy because of intestinal problems. I couldn’t have a complete regular one because of a turn which made it seem dangerous. I had a virtual colonoscopy then which I was told no polops, yet I still worry about cancer going there. I’m having a scan in April and will meet my new oncologist then. I’m hoping to never be set free from the oncologist. Yes, I‘m living a full life but the fear is still there.

pinky104

2 Recurrences

I've had two recurrences.  The first happened almost 7 years after my first treatment.  It was found when my doctor charged my insurance for a hemoccult test that I didn't have, and I complained about it.  So then he offered to have me have it, and one of the three smears I'd provided showed blood in it (which I hadn't been able to see).  I realized later that I'd been having a narrowing of my stools for a while, and I should've known from that, I guess.  The second time around, I had numbness that was getting worse in one leg only.  My oncologist ordered a CT scan which was negative.  Then I got pain in my hip, which was diagnosed as greater trochanteric bursitis.  It really was from the cancer.  A neurologist also misdiagnosed me with wearing my clothes too tight.  Instead, it was the cancer in muscles in my abdomen pressing on the nerve that ran over my hip (tight clothes can cause the same nerve compression).  Then I got bad diarrhea and was diagnosed with a GI virus going around.  Before I got that, my GYN/onc. checked my CA-125 and since it hadn't changed any, he thought I might even be cured this time.  In January, when I saw my other oncologist at another hospital, I complained about the diarrhea.  My CA-125 had only gone up a couple of points, and he told me he thought I didn't have cancer.  I requested a GI consult eventually from my PCP when the diarrhea didn't go away, but I didn't get the call from the GI office when I thought I should.  It turned out, the consult had never been requested (it's a very busy office, and the PA there is usually on top of things).  I asked about it a couple of weeks later, and the request was put in.  A day after that, I had a GI bleed, got in with the doctor immediately, and had a CT scan two days later which showed the cancer in the two muscles.  I had a colonoscopy and a PET scan after that.  The colonoscopy showed ulcerations in the transverse colon, and I'm still awaiting the results of a biopsy of that.  Also, I forgot to mention that I had a routine 6 mo. appointment with my urologist for my frequent UTI's and got pain sitting up from being examined on his table.  I complained about it at the time.  He checked me to see if my incisional hernia had returned, but he couldn't find it, so he thought I had an abdominal wall muscle strain.  Shortly after that, I noticed that I could feel the mass just inside my pelvic bone on my own, and it had grown to 5.7 x 10 cm. by that point.

Just keep in mind that the CA-125 and the CT scans aren't infallible.  Advocate hard for yourself whenever you have strange symptoms.

evolo58

CA-125 test

Right before, I had a wicked attack of either IBS or divierticular-related issues, brought on, I believe, solely from extreme stress ... a diagnositc mammo (thankfully, benign, but I found that out right before my post-endometrial-cancer checkup), dealing with the IRS on behalf of my mother (Stressful? Nah ....), dealing with state income tax issues on behalf of my mother, and of course, the endometrial checkup ... all within about a three-week time span. This was scanxiety amped to 11.

But other than that, no symptoms I would find concerning, and everything pretty much subsided by my appointment. So imagine my surprise when the CA-125 was 770. My ORIGINAL CA-125 after my diagnosis was 127! The .... blank?

It turned out that a chunk of it was due to the Bowels from Hell episode. A chunk, however, was not. While I had no lymph node involvement at first-line, it seems a few of them are agitated now, and the lower-right-quardrant watch and wait was starting to smolder like a trash-can fire ... enlarged nodules. Enlarged nodules in one or two other places as well. 

So much for the watch and wait. I still strongly believe it shouldn't have been, and perhaps an extra chemo or two back then might have been wise. I remember being uneasy in July, a month after my last first-line chemo. The increased CA-125 was in October.

So my only concerning symptom ... the CA-125.