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My Recurrence Story

Virgil90012's picture
Virgil90012
Posts: 34
Joined: Feb 2015

Although I still visit this site, I haven't posted much because I didn't feel that I had a lot to add since my Gyne-Oncologist said that my "garden variety" cancer was caught early and I wouldn't need to have further treatment other than surgery. That was October 2014.  Today, I met with my new Gyne-Oncologist (this was only my third visit with him) and he just biopsied a suspicious growth in my vagina.  He believes that it will be positive for a recurrence.

Although my story is long, I am hoping that it helps us ladies to always remain vigilant. 

Here is my story:  I was diagnosed in October 2014 with Adenocarcinoma Stage 1A Grade 2. 

- I had a laparascopic robotic hysterectomy with removal of ovaries, uterus, and tubes along with removal of omentum and about 18 lymph nodes on October 24, 2014. 

- I have been going regularly to the Gyne-Oncologist for the last 51 months (the first two years, every three months; the third year, every 4 months; and the fourth year, 6-month visits).  During this time, my first Gyne-Oncologist (he was the one that did my robotic hysterectomy) left the practice after a year and so I was seeing the other Gyne-Oncologist in the practice for the next two years.  She left to go to another regional office in April 2017 and I opted to stay at the local medical office with the new Gyne-Oncologist.  Every visit, I would have a pelvic exam and a CA125 blood test; and a Chest X-Ray yearly.  These visits would always be good with a smile from my doctor saying that I was doing well (Pelvic exams were good, CA125 ranged from 8-11 and within normal levels and the chest x-rays normal). 

- Since July 2017, I was noticing that I had some light bleeding but it would stop after a day.  The first time that it happened, I went in to see my regular gynecologist that same day and she checked me and found no suspicious areas in the vagina to suspect a recurrence.  I was diagnosed with having a UTI and given antibiotics.  For the next two months, I kept having these UTIs so my gynecologist gave me a referral to a Urologist.

- In November, the Urologist conducted a CT Urogram and a Cystoscopy on me and found nothing unusual related to my bladder so he put me on low-dose antibiotics for frequent UTIs.  The CT Urogram did see some hematomas on my liver where one seemed new and the recommendation was to do follow-up if needed. 

- In the meantime, I had an October 2018 visit with my new Gyne-Oncologist.  Because I was now on my fourth year of NED, this was my regularly scheduled 6-month visit.  My new doctor checked me out and found that everything seem well but since this was my first visit with him, he asked me to come back to see him in three-months instead of 6 months. So I saw him again in January 2019 and again all was well.  He wished me well and said that I would not have to see him until October 2019 which would be my last vist with him (5-year mark). 

- On Thursday Feb 7, I had bleeding again so I contacted my Urologist who did another urine culture on me but this time the culture came back negative.  Because it was negative, I contacted my oncologist and told him that I had bleeding.  He sent me for a PET Scan and CT Scan on February 14 just as a precaution. 

- Today I saw the oncologist who gave me the results,  The PET Scan detected a 1.3 cm. subcapsular hypermetabolic hepatic mass which was corroborated by the CT Scan.  In addition, the PET Scan detected "a nonspecific ovoid hypermetabolism involving the right peroneal soft tissues/right lateral vaginal wall without underlying CT correlate".  Because the CT Scan didn't see the same thing, my oncologist did a physical exam in the same area and found something suspicious.  He biopsied the tissue and I will know for sure if it is a recurrence in the next few days but my doctor said he expects it to be positive. 

I will be meeting with a surgical oncologist on Thursday to go over the liver finding.  My Gyne-Oncologist believes that they will both be doing my surgery on the same day with one removing the growth in my vagina and the other one removing the growth on my liver with treatment being radiation and chemo.  He believes that because we were being so cautious, both growths were found early.  I didn't even have any symptoms for the liver growth and my CA125 never went beyond 10.8 so if it wasn't for the CT Scan and the PET Scan, I would not have known that I was having a recurrence until much later. 

I am still in shocked right now because I thought that I had dodged a "bullet" with only 8 months left to go before I would have been "cured".  I am now starting over and I am scared. 

Please be vigilant and even if a symptom seems so unimportant, check with your doctor.  It is better to seem foolish than for the worse case scenario.

Tamlen's picture
Tamlen
Posts: 201
Joined: Jan 2018

I'm sorry you've received such shocking news after so long a period of good news. Cancer is such a damn wily beast. Hopefully, because you've been vigilant and acted so quickly on the spotting, and the masses were found at an early stage, this will mean they can be tackled successfully again.

Your story is an important one for all of us and I'm grateful you've posted it. Once we've tangled with the beast, we can never be complacent again.

You'll come back and keep us updated, won't you?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

I couldn't agree more with, Tamlen.  I am so sorry to hear this and appreciate you coming back to let us know.  You illuminate the fact that we must be our own advocates.  Please let us know how it is going and that many of us are thinking of you.

Jairoldi's picture
Jairoldi
Posts: 215
Joined: May 2017

Thank you for checking back in to share your latest news.  It must be disheartening.  Thank you for reminding us to be vigilant and self advocates.  As the other ladies have expressed please know that we appreciate you sharing and wish you well with your newest plan for treatment.

zsazsa1
Posts: 344
Joined: Oct 2018

Thank you for posting this information.  I'm hopeful for you that surgery, chemo, and radiation will put you back into a long-term remission, or even effect a cure.  I'm glad that you have physicians who are going after this recurrence aggresssively.

Right now I am trying to decide on post-treatment surveillance.  My oncologist is recommending NO scans, since she says that studies show that they do not increase survival.  Another oncologist is offering every 6 months CT scans chest/abd/pelvis for the firs two years, but says that my insurance will likely not pay for PET/CT, and that PET/CT is really not better than CT alone.  Meanwhile, it appears that your vaginal area recurrence would not have been picked up without the PET component of the PET/CT.  So I appreciate this information, because it tells me that the PET component can definitely be useful.

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

Your story affirms what my doctor has said - trust your gut! More uterine cancer is found by the woman than by the tests. I went to a new doctor, told her I thought something was wrong. She did a PAP, said "You get old" in her Communist accent and told me to come back in a year. I KNEW something was wrong so went to a different doctor who sent me to a gynecologist who did a biopsy and sure enough, I had cancer.

It's the same with recurrence. I've gone to my checkups every six months and they tell me they see nothing. I had some hip pain so went to a chiropractor. When I told them about the cancer they refused to do anything until I had an x-ray to make sure it hadn't come back in my bones. After an all-clear, she worked on me and now the pain is gone. I wouldn't hesitate for one minute to go back to an oncologist/gynecologist if I thought something didn't feel right. You just can't be too careful especially with UPSC. But your story shows it can happen to any kind of uterine cancer. Good luck!!

Love,

Eldri

janaes
Posts: 776
Joined: May 2016

Im a little more than 2 years out from treatmet. Sometimes i get tired of all the checkups. Your story is a good reminder to me that taking care of ourselves is important. 

It sounds like you are doing that for yourself and thats great. 

I hope it all goes well as you go forward and beat the darn beast. 

Thanks for sharing your strength

MAbound
Posts: 874
Joined: Jun 2016

Your story hits home and I'm grateful you've taken the time to share it with us. All the tests and checkups can get to be a drag, but they're important!

This was why I didn't settle for a gynecologist for follow-up care when I moved to the Boston area. It really surprised me to be told repeatedly by gyn-oncologist offices that they don't do follow-up care after my Buffalo gyn-oncologist said I'd be followed by him for the rest of my life. Just because you've been NED for awhile doesn't mean vigilence is no longer required and I'd feel that much more vulnerable if I didn't have someone who is an expert in gyn cancers knowing me and my high risk history if and when a recurrence strikes. 

On a side note I like to ask for your prayers for my former gyn oncologist. I just received a letter from his office that he's taking a sudden leave of absence for health reasons. Gyn oncologists are not plentiful in Buffalo and he's a treasure among them, so his absence will be felt by many, including the other specialists who'll need to pick up the slack. Lady Mox, I'm still thinking of you and hope that you are still with us.

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

Glad you have some good doctor's who will be taking care of you and good on you for going with your 'gut'! We do have to be advocates for ourselves even when we have the 'supposedly best' professionals taking care of us. All the best with the new treatment plan. Keep us posted and know you are in my prayers. Also will say some prayers for MAbound's doc. xo

Yes I am a big believer that we have to be advocates for ourselves. I remember after my hyster I started having hip pain and told the NP at my four month follow up who stated 'oh it's probably positional'!!! Ummm no it wasn't so I went to my local gyn who ordered the CT scan and that is how my metastatic cancer was picked up. So moral of story be vigilant and listen to your gut! xoxo

oldbeauty
Posts: 194
Joined: May 2012

Virgil90012, thank you for sharing your news.  It can be difficult for newbies here to see that there is no magic gold ring at the end of a five year remission (I've had two of those), and that we must remain vigilant and insist that our concerns and symptoms be acted on and not merely get a pat on the back and a "it's probably....see you next time."  I am glad to see you have caring and skilled practitioners who will offer you treatment options.  Again, catching recurrences early (like catching the initial dx early) is a leg up on beating it back again.  Best wishes to you as you navigate this unfortunate turn of events.  Oldbeauty

pinky104
Posts: 574
Joined: Feb 2013

I know how you feel.  Mine came back almost 7 years from the date it was initially diagnosed.  I had two oncologists (one a GYN/onc) who both thought it was gone.  Now, I'm almost 9 years out from the initial diagnosis, and it's back again.  Mine was also an adenocarcinoma, a serous one.  Just keep complaining about your problems until somebody listens to you.  I've been through a lot of doctors for what I have now.

janaes
Posts: 776
Joined: May 2016

MABound im going to pray for your doctor. I lost my medical oncologist just after treatment because he retired. Not exsactly the same but i wonder sometimes because if my cancer comes back i wont have him. The mediical assistants at the clinic do the follow up care so no loss at this point. Have had to ask the medical assistants about the new doctor.  It is a loss and hope yours gets to come back.

 

MAbound
Posts: 874
Joined: Jun 2016

This was probably not the right thread to post that in, but the letter had me upset for him today. He's not my doctor anymore, but I can't help but feel bad for all the ladies he's in the middle of treating. Insurance issues when I was in the middle of treatment almost forced me to have to change doctors, so it gets me to think of others facing the same possibility at such a difficult time. I don't know what his issue is, but I believe the power of prayers from this group can do nothing but help him. There just aren't enough of these specialists in less populated areas to meet the need,; especially ones with the expertise and compassion he has. Thank you Janaes, it means a lot.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Thank you all for posting. Yes, we all need to remain vigilant . I will finally have a scan and meet my new oncologist in April. Even though I remain feeling relatively well, I will not give up. We only have two gynechological oncologists here. My original left several months ago and we were fortunate to finally get a new one. I will not feel at ease after 5 years andpray they won’t release ,e. My treatments ended in August 2016 and fortunately my PA who I saw last believes I still need to be seen often as I hadclear cell.

janaes
Posts: 776
Joined: May 2016

This is what i have a hard time with. I dont know if anyone hasvthe same probem with there doctors but after treatment the doctors dont seem to care as much. I showed up at a doctors appointment once on the wrong day. I had missed the appointment. I felt forgotten. Any ways it was a bummer and had to rescedual. I told the receptionist there that i wish they called or texted to remind me of appointments. She told me they were working on someting like that. But i havent seen it.

Thats why i like your story so much. Advicating for ourselves is so important because some times that is all we got.

Thanks again virgil

LisaPizza's picture
LisaPizza
Posts: 229
Joined: Feb 2018

I get email, text and phone call. It really is nice, because I do get some anxiety about mixing things up and missing my appointment. I also think they do it primarily for their own benefit, to maintain efficiency and costs. It only makes sense in this day and age to at least have automated emails and texts go out. 

tkayo0633
Posts: 3
Joined: Jun 2017

Reading these stories help me stay positive for my sister. When she feels like it’s never ending and she’s so tired of it all, I read these stories and it makes me stronger to help my sister. 

 

She was 40 when she had a total hysterectomy and was told she had clear cell carcinoma and it was 4B 3C she thinks. She did chemo radiation chemo again. She did 6 month scans of abdomen and chest and they were clear. But not let no after that she started being off balance. She didn’t think anything of it and went to her pcp thing she had a inner ear infection. Her pcp sent her for ct scan of brain just because she had cancer. The scans came back showing 3 lesions on her brain. All the Drs said it looked the same as the endome that she originally had. That it had moved straight to her brain. She went through true beam radiation and it shrunk 1 completely down and the other 2 shrunk more than half. This was in 2017.  She is going every 3 months for MRI of brain and ct of abdomen and chest. then in aug 2018 the scans showed the one tumor that had shrunk to nothing was growing rapidly. They didn’t know if it was from the cancer or reaction to radiation (radiation necrosi). She had open brain surgery and they removed as much of is as they could. Which was most of it but it was on her right leg sensory tract so she has lost some feeling in her leg. Then wait and see what other tumors do. So just last week nero dr said they have grown big enough that he could go in and remove them. But the brain tumor dr said that she could try chemo. Avisten I think and that had a chance of shrinking the tumors. Where the other 2 are is one effects her eyes and other does her balance. So she started feeling off balance more but because of leg not having as much feeling she wasn’t sure until she started the steroid. Hoping this is still just reaction to radiation and not cancer coming back. Hope the chemo shrinks them because if she has to have open brain surgery I am sure she will lose some of her senses. 

 

I keep telling her her that she can’t give up and I know it’s overwhelming sometimes but you can do it. When I read your stories it just encourages me more and helps me give her more positive thoughts. 

 

All you you women are brave and strong. If you can fight cancer you can do anything. Don’t give up and don’t think your bugging your dr to much because you know your body and the drs don’t know where the Cancer can show up next. They were totally surprised when it showed up in my sisters brain And nowhere else. Hopefully one day there will be a cure or u of how to prevent. 

 

God old bless you and your all in my prayers. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

Your sister is in my prayers.  Please know that none of us fight alone, I know I could not have gone through this without the love and support of my family and friends.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

that this has happened to your sister. She is so very young-younger than my daughter. I will be holding her in my thoughts.  May she have the strength and courage to continue her fight. 

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