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Recurrence stories

BluebirdOne's picture
BluebirdOne
Posts: 452
Joined: Jul 2018

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's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

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
Posts: 74
Joined: Aug 2018

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

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

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. 

Denise66
Posts: 74
Joined: Aug 2018

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. 

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

I'm curious because mine will be brachytherapy, 3 sessions intermediate radiation. I'm stage 1a, grade 3 for adenocarcinoma. Not sure what comes after that. I only know I have a followup with my gyno oncologist in August, which will be 4 months after hysterectomy.

Anonymous user (not verified)

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.  

Jairoldi's picture
Jairoldi
Posts: 221
Joined: May 2017

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's picture
Donna Faye
Posts: 430
Joined: Jan 2017

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.

BluebirdOne's picture
BluebirdOne
Posts: 452
Joined: Jul 2018

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 

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

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's picture
BluebirdOne
Posts: 452
Joined: Jul 2018

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 

 

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

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's picture
BluebirdOne
Posts: 452
Joined: Jul 2018

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 

MAbound
Posts: 1153
Joined: Jun 2016

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
Posts: 309
Joined: Oct 2017

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.

BluebirdOne's picture
BluebirdOne
Posts: 452
Joined: Jul 2018

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's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

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's picture
derMaus
Posts: 561
Joined: Nov 2016

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's picture
Soup52
Posts: 906
Joined: Jan 2016

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
Posts: 574
Joined: Feb 2013

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
Posts: 293
Joined: Dec 2017

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.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Starting to smolder like a trash can fire...I LOVE that characterization. Much better that than a full-on dumpster fire, ha!

evolo58
Posts: 293
Joined: Dec 2017

PLEASE trying to throw lit ciggies in it? :) Use an ashtray, for Pete's sake!

Ljs908
Posts: 3
Joined: Mar 2019

Hi, new member but have lurked for about a year.  I was diagnosed in Jan 2017, endometrial adenocarcinoma, stage 1a grade 2.  LVI 'strongly suspected'.  I had davinci total hysterectomy Feb 2017, then 5 sessions of brachytherapy.  I asked about chemo, and was advised the side effects outweighed the benefits for grade 2.  I hadn't researched enough at that point to be scared by the LVI note. 

In Nov 2017, I started having sciatica pain, identical to a previous bout, and since I had been moving furniture, I didn't think much of it.  I had a yearly follow up CT in Feb 2018 that showed mets to lungs, one aortic lymph node and bone mass on my ischium pelvic bone (the sciatica pain).  I have never had any symptoms related to the lung or lymph tumors, and feel the CT found problems much sooner than waiting for symptoms.  I now also don't assume a new pain is just some trivial thing, although most times it is.

Denise66
Posts: 74
Joined: Aug 2018

LJS908

I'm so sorry to hear of your recurrance.  Would you mind providing a little more info about your cancer?  Did you have a positive pelvic wash?  Did you test positive for P53?  Any genetic testing done for Lynch?  Do you know the size of your tumor and percentage of myometrial invasion?  Also, how old were you when diagnosed?  What  type of treatment are you receiving for your recurrance?  Most importantly, how are you feeling? 

I too an Grade 2, stage IB.  I'm sorry you are going through this. 

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Hi Ljs, 

Gosh your story sounds sort of similiar to mine...check out my 'about me' page. Amazing how endometrial cancer even when staged 1a it still can spread. The little beasts are so darn tricky. I think the guidelines need to change and more importance placed on the LVSI and if positive then chemo / radiation should be a given. I will always wonder if chemo had been done right after my hyster if that may have prevented my cancer  from spreading. But here I am now and doing ok so I have to live in the here and now! 

Anyway how are you doing? Did they decide on some chemo for you? So glad you had the CT and the mets were found so that treatment could be started to stop the progression. All the best and let us know how you are doing? 

Lulu xo

BluebirdOne's picture
BluebirdOne
Posts: 452
Joined: Jul 2018

I am so sorry to hear that your cancer has spread. I was dx in July if 2018, 1a UPSC which is grade 3 with LVSI. I had 4 chemo, 3 brachy. Am NED as of November 2018 scan. I think people's stories are invaluable. Anecdotal, sure, but at least we are educating one another on differing treatment protocols and experiences. I have so much knowledge due to others sharing. Glad to meet you and please don't hesitate to continue sharing. 

xxoo 

Denise

Ljs908
Posts: 3
Joined: Mar 2019

Glad I decided to finally post something, it's very nice to have feedback.  Thank you!

I was 57 when originally diagnosed, had not officially gone into menopause.  I had some spotting but figured it was part of the menopause process.  A good friend said she had something similar and pushed me to go to the doctor, thank God.  The path report has multiple dimensions, anterior and posterior, but I remember the diagram after an ultrasound showing the uterus completely filled. Myometrial invasion <50%.

The pelvic wash was atypical.  Negative for lynch and p53 (I wasn't familiar with that term, but google searches matched up the info for me.)  I did 6 rounds of carbo/abraxane, completed in Jul 2018.  CA-125 was down to 17.  Started letrozole.  Foundation One testing showed an mTOR inhibitor would help.  We fought the insurance company to get approved for everolimus/affinitor, but got denied.  Had 10 external radiation treatments for bone mass in Oct 2018, and have been pain free since then.  Which is awesome... 

In Nov 2018, my CA-125 went back up to 80, the tumors got larger again, and my oncologist got me approved for temsirolimus/ torisel, an mTOR inhibitor done via infusion.  I've been on it weekly since mid Nov, a CT last month shows 30% decrease in tumors, so it's working.  The side effects are manageable.  I feel pretty good, am back on procrit for low hemoglobin.  I decided to try short term disability this time, have been on it since end of January.  I'm conflicted about not working, but the greatly reduced stress and not being in the car 2 hours a day is a huge benefit.

Lulu, our stories are very similar.  I also wonder if chemo right after the surgery would have stopped the progression, but can't dwell on it.   How are you doing on the everolimus?  

 

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Hi Ljs,

Doing ok on the everolimus but still have some active disease in my lungs so doc is presenting my case to the tumor board for recommendations. I suspect next steps will be a clinical trial. She mentioned some with immunotherapy and chemo. So I wait to hear what they recommend. 

The side effects of the everolimus have been managable. Thankfully using the dexamethasone mouth rinse and a marshmellow pillow technique to swallow the pill have prevented mouth ulcers which is a very common side effect. Some back pain and groin pain that responds to aleve...we aren't sure if its the mets or the meds....hard to know. 

Glad to hear the mTOR inhibitor is working for you. I did try to work but the stress I am sure didn't help my disease so decided to retire. Thankfully my husband is still working and he carries our health insurance. If you can milk the short term disability for as long as your company will allow and if they have long term disability I would try and do that. Just my two cents. 

All the best and keep in touch. Praying for continued decrease in your tumors. xoxo

Ljs908
Posts: 3
Joined: Mar 2019

Hi, have not been on the board for a while.  Still doing weekly torisel treatments which started in Nov.  I'm due for another CT in June to see what's happening.  My CA-125 has been staying low, but side effects slowly ramping up.  Still manageable though.  

Lulu, I saw on a different thread that you were in a clinical trial.  How are you doing?

 

SF73
Posts: 309
Joined: Oct 2017

Dear Ljs

Welcome to the board! It must have been such a shock to have a recurrence after Stage 1A. I am so sorry you experienced all that. Mine was Grade 1 Stage 2 (less than 50% myometrial invasion, some cervical invasion) but with a positive pelvic wash and I also had a recurrence 3 months after my hysterectomy. So I can relate to the shock. Glad to hear you are responding well to mTOR inhibitor. I cannot believe you got denied by the insurance the first time around. I wish there was a way to keep them accountable for the bad decisions they make. Can you not sue them? Metformin is also an mTOR inhibitor, is it not? Maybe it is something to consider as a maintenance drug once you are done with the mTOR inhibitor via infusion. 

Wishing you all the best!

evolo58
Posts: 293
Joined: Dec 2017

Anything for profits. I feel queasy whenever they so much as imply that they're doing this for my benefit. Yeah, right.

In my case with my progression (happened within four months after my last chemo in June, so well within the year, and there was concern about a small patch of possible cancer in July. The radiologist was right; the doctor was not):

Doxil ... approved.
Avastin with Doxil ... denied. (I'm under compassionate use.)
Neulasta ... denied.
CT scan at my local hospital ... denied. (Managed to get one approved and scheduled for tomorrow at an outpatient facility after much delay. Prayers and good wishes really appreciated, thanks!)

Last year, at first-line, I don't recall insurance being this much of a pain with me or just about all of you here. Maybe a couple of issues, but not nearly as many.

It is stressful enough dealing with cancer without battling insurance companies. The patient/doctor relationship seems to be patient/doctor/insurance now.

I am still waiting to see if I can get on Vitrakvi. According to Bayer/Loxo, they are supposedly working with insurance companies to cause as litlte hassle for patients, doctors and insurance companies as possible. We'll see if they pull it off. I know I need to be patient. But yes ... I'm looking nervously at the insurance company. 

It's gotten to the point when if there is a delay concerning an aspect of my treatment, my first thought is, "It's the !@#$ing insurance company again, isn't it?" Sadly, I've been right most of the time. And I've heard and read that other companies are following suit. If one company gets away with this nonsense, others try it next.

Fridays Child
Posts: 214
Joined: Jul 2019

Originally I was diagnosed with stage 1a, grade 1 endometrioid adenocarcinoma.  Robotic hysterectomy followed by brachytherapy. Positive pelvic wash. 23 lymph nodes were clear.  I was 56 at the time. 

I had some hip pain prior to the hysterectomy.  After several checkups when the hip pain had continued, they ordered a CT scan, which was clear.  So as it continued off and on, and I continued to report it, we all just assumed it was arthritis or something.  Activity helped relieve it.  All the assorted doctors said if it comes and goes, it's not cancer.  Eventually my cancer center released me and I went to a new regular gyn, my prior one having retired.  When I continued mentioning the hip pain, he suggested seeing ortho.  When the x-ray was negative, he sent me for an MRI, which revealed a pelvic mass invading my hip joint.

While we were trying to get a PET scan approved, they were planning my treatment, discussing chemo, radiation, or hormone treatment.  When I finally got the PET scan it showed mets in both lungs in addition to the pelvic mass. (They went back to the old CT scan from four years earlier and still found nothing on it.)  At this point they decided I should have low dose chemo concurrent with radiation, followed by full dose chemo.  That was completed about a year ago, and then they put me on letrozole for maintenance.

So far scans have showed continued improvement, but "can't rule out cancer."  Insurance won't approve a PET scan at this point to check for active disease so as far as I know, it's either dead or smoldering (to continue the trash can fire analogy from above Wink).

Like you, evolo58, I am very nervous about my insurance.  I'm supposed to have an MRI, which was scheduled two months ago.  It had to be cancelled because it hadn't been approved or denied as of the day before it was scheduled.  Three hours after I should have had it, they got the approval, so now it's two more weeks of scanxiety!

But please, never let anyone tell you that intermittent pain is not cancer!

 

 

 

Kddbrad
Posts: 2
Joined: May 2019

I was diagnosed in 2011 with what turned out to be stage 3 endometrial cancer.  Underwent a total hysterectomy, oophectomy, and removal of lymph nodes.   Went through 6 rounds of carboplatin/pacilataxel.   Did screenings every three months, then six months, then annually.   Celebrated 5 years NED With my wonderful gyn onc.   In 2018, had a strange discharge and went in to discover the cancer was back on the vaginal cuff.   Went through 5/6 rounds of external radiation then 3 days of immobility while undergoing brachytherapy.   Began the exams and tests again, all clear.   On my 6 month exam which was to be my release to annual visits, X-rays captured spots on the lung.    I have now undergone a lung wedge sectioning and 2 sessions of doxilrubicin/paclitaxel with 4 more to go.   Came to this blog since it was a source of information and encouragement before even thought I did not post.   Just reading the blogs of those who have gone through what I am going through and knowing there is still hope!

ConnieSW
Posts: 1575
Joined: Jun 2012

i'm so sorry you had to face this thing again after so long being free and clear. I know I'll NEVER  feel safe. 

You and I had the same type of brachytherapy. For me it was the hardest part of treatment but I don't seem to have any aftereffects. 

Good luck and stay tough. 

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Welcome, as one of our beloved members used to say, to the club nobody wants to join.  I'm so sorry you have recurred - I know you're thankful for the healthy years between, but my heart goes out to you as you fight again.  You'll find support here, and hopefully lots of good information to aid you as you walk out this path.  Blessings.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

Welcome Kddbrad. I'm glad you decided to join in the conversation. But, so sorry there is a need to do so. Please keep in touch and let us know how you are doing. 

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2905
Joined: Mar 2013

Kddbrad, I am so sorry to hear this.  You remind us to always be vigilant.  Please keep in touch.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

I have a high tolerance for pain And I do not take any meds.  However when I started getting pain and started to take Motrin a couple of times a week then several times a week until I was taking it daily I knew it was a recurrence.  This has happened twice.   Also it’s how my original diagnosis started.  Having severe pain.   Said it was nothing.  Had colonoscopy it was fine. Tried to give me antidepressants. It wasn’t until I had my hysterectomy that they found it although I suffered for over a year prior to my hysterectomy 

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Can you tell me what the pain was like?  Where it was?  I'm trying to be vigilant about symptoms, as my gyn/onc said that symptoms appear just as soon as something would be found on a scan.  I didn't have any pain or symptoms with my first diagnosis, so I'm not sure what to look for!

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

My initial pain (prior to diagnosis) was like someone wringing out my insides.  I was also getting sciatic painlike symptoms.  Like twisting a towel.   My recurrence pain were all in my left buttocks near the anal opening.   Due to my extensive scarring from all my operations, I do have a high tolerance to pain.  My husband would ask me if I was in pain when he saw my face.  I didn't realize I was in pain until I took a Motrin.  I would get real run down, heavy eyes, and then realized I was in pain.  Its really hard to describe to doctors.  But on a normal basis, I don't take any medicines. and then when I started needing a motrin a couple times a week, to almost everyday and then finally everyday that I knew something was wrong.  Most of my scans were good.  I did have some soft tissue masses which they weren't concerned about and one which was PET low positive but stayed stable for most part.   But once I started getting pain, they did another biopsy and got a positive result which then I had surgery to remove it.

Currently, I am back to the no medications.

Fridays Child
Posts: 214
Joined: Jul 2019

Armywife, the pain I had was in the hip joint and low on the left side of the abdomen. As noted above, the CT scan was negative. Sometimes it was uncomfortable to have even something as thin as a grocery receipt in the left pocket if I sat down. Most of the time if I was up moving it was fine.  Sitting and lying down were uncomfortable.  And most of the time the pain was minor and not something I thought much about. 

Occasionally it bothered me at night and I couldn't get comfortable.  One night it literally kept me awake all night.  I got up very early and went to walk and it got better and didn't bother me the rest of the day.  I had a regular appointment right after that with my gyn (having been released from the gyn oncologist) and we decided I should go to ortho.  He's the one who rodered the scan that revealed the mass.

I hope you never have the same experience!

oldbeauty
Posts: 316
Joined: May 2012

Friday's Child, did the ortho order a CT or an MRI or something else?  Best wishes, Oldbeauty

Fridays Child
Posts: 214
Joined: Jul 2019

Oldbeauty, the ortho ordered an MRI which showed the pelvic mass and suspicion of bone involvement.  Regular x-rays had not shown anything but because of the pain he thought we needed more information.

oldbeauty
Posts: 316
Joined: May 2012

Thanks for the info.  Best wishes, Oldbeauty. 

Mercorby
Posts: 32
Joined: Jan 2017

Stage 1b, Grade 3  ER+ PR+ HER2-  I didn't feel or have any signs of the recurrences before the scans found them.

I had one recurrence a year and a half after the hysterectomy. Then, I had a combo of radiation and chemo. Then they put me on an aromatase inhibitor.  Six months after chemo. I had another recurrence on my stomach muscle near the scar, so I had radiation and they added Ibrance to the aromatase inhibitor.  Naturally, I've been nervous about recurrence.  Both my gyn and hemo oncs agreed that I can continue with 6 month scans and 3 month gyn exams indefinitely.  I also see the hemo onc each month when I get my blood tests and port flushed.

What I have read is that the highest chance of a recurrence is within 3 years of the first diagnosis.  Therefore, I would ask for scans and visits at regualr intervals.

ConnieSW
Posts: 1575
Joined: Jun 2012

I read your CSN my space and liked and admired what you had to say. Thank you. 

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jan9wils
Posts: 164
Joined: Mar 2017

There is still hope! There is always hope!  I had a wedge resection to my lung in Oct 2107. Did the six rounds of doxy/paciltaxal. Afterwards I felt good. Went back to work as a substitute teacher, babysat my granddaughter for 8 months until my daughter got pregnant again and decided to stay home for a couple of years. I enjoyed hiking and kayaking, swimming and vacationing a bit. I remained NED  until this past April. I had pain with recurrences to my abdominal muscles and peritoneum. The pain I had was like sciatica and some local pain on the abdominal muscle. I'm on pain meds which are a blessing for me. Kddbrad, you've got this! I never had a long remission like you have had so I think you will have a good long remission after this treatment. BTW, the chemo was to pick up any small bits of cancer that may have been floating around in my body. Once the lung resection was done there were no measurable tumors but my doctors don't like to say "they got it all" when you've recurred.

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BluebirdOne
Posts: 452
Joined: Jul 2018

I woke up this morning with what I thought was a stiff neck As the day progressed I felt around and found an extremely tender spot just above my collar bone. It seemed a bit hard, but also was very sensitive to being palpated It is also warm to the touch. In the past month I have had a pain in the soft tissue next to my left hip bone, on and off. It is a dull ache, every day, but not constant. I suffer from osteoarthritis in my spine, hands wrists, knees for 25 years, so I have had pain in the hip and back area for many years. My greatest fear is the osteoarthritis pain masks any cancer pain. I contacted my oncologi and will probably have to go in for scans and exams. Not my idea of a good time at Christmas when I was looking forward to spending time with my granddaughter and family I am scared to death, but like Donna Faye, I want to keep this news secret until after Christma. Hope it is nothing. 

 

Denise 

zsazsa1
Posts: 557
Joined: Oct 2018

I hope it is nothing, too.  From your history, which was UPSC 1a, with chemo and brachy, odds are definitely in your favor that you won't recur.  Which side is the node on?  Your left, or your right?  Virchow's node, which is a sentinel node for the chest, is on the left, in the supraclavicular area.  Also, usually, cancer nodes are very hard, like rock hard, and not tender, and not warm. Warm, tender nodes are more likely to be from infection.

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