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Stage 1 Grade 1 Adenocarcinoma

calliegirl
Posts: 54
Joined: Jan 2018

Good Morning ladies...

Been a very long time , since I have posted on the board however, I know this site and our group is amazing for advice, support and comfort.

 

I was dx Nov 1 2017, full hyst and BSO on Dec 8 2017 and placed into remisson Jan 2018 after staging results where returned and confirmed with the tumor board. Stage 1 grade 1 adenocarcinoma, with lymphvascular invasion LVSI.

 

Fast forward, I finally went for my long overdue check up (due to COVID) I hesitated. Anyhow, I have dropped a significant amount of weight since my last visit, over 15 pounds, and explaind to my surgeon gyno oncologist that I have also been feeling very tired. All he did was examine internally, and stressed to get a colonoscopy and EGD due to my Lynch Syndrome PMS 2  mutation.

 

My question, is this normal for low grade cancer check up? Just an examine, no tests, scans, or bloodwork?

After me stressing Im not feeling myself...

Second opinion perhaps?

Thoughts, advice own experiences?

 

Thank you much appreciated. Smile

Elena : )

 

MAbound
Posts: 1101
Joined: Jun 2016

Follow-up care probably depends on your doctor and your cancer. Standard is usually every 4 months the first 2-3 years, then every 6 months till your 5th year and annually after that. Visits include pelvic exams and questions about how you've been feeling. I think other testing depends on the type and stage of cancer you had as well as your doctor's beliefs and practices. Some are more conservative about testing than others because of cost, risks of radiation exposure, and iffy reliablity of a test like an CA 125.

I've been a houseplant since March because of Covid, too, but I do go out for groceries and medical and testing appointments. Do follow your doctor's advice for a colonoscopy since you have Lynch and these symptoms. He's right to have you rule that out first for your complaints about weight loss and fatigue. While you are waiting for your appointment, I'd also get to your primary about this to rule out other possibilities as those also exist for such symptoms. He can order lab work and xrays to help get to the bottom of what's going on. 

If those two courses of action yield nothing and you continue to lose weight when you're not trying to, by all means go back to your oncologist or get a 2nd opinion and push to rule out that you are not having a recurrence. Any doctor probably needs for you to take those other actions before they'd be able to justify to insurance sending you for any of the more expensive testing.

Your concerns are not in your head and you do need to get them checked out; don't let Covid hold you back because you do have to take care of your health needs while protecting yourself from exposure. 

ConnieSW
Posts: 1545
Joined: Jun 2012

Excellent advice, MA.  Do let us know how it goes, calliegirl.

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

I can answer your question about follow up visits.  I have serous intraepithelial carcinoma.  No malignancy in any hysterectomy specimens.  So I am also early, but serous type.   My follwo up visits include a physical exam, a pelvic exam and interview.  No blood work, no scans.  I have had a cough, hip and back pain, and now weight loss (I have been trying to lose weight after back surgery to reduce the pain which is working).  So i have had some symptoms of recurrence and still no scans.   All of my problems so far have resolved.  

Your MD seems to feel that the greatest problem is your Lynch syndrome and weight loss.  I would get the colonoscopy as soon as you can.  And hopefully it will be nothing.  

 

MoeKay
Posts: 313
Joined: Feb 2004

Hi Elena,

I too agree with MABound's recommendation that you follow your doctor's advice and schedule a colonoscopy, as well as see you primary physician and discuss your current symptoms with her/him. 

On the follow-up issue, I was treated for stage 1c, grade 2, endometrial adenocarcinoma in 1999.  I too had LVSI.  My sense is that less scans are being done these days, but my gyn-onc ordered a CT scan around the time of the first anniversary of my surgery.  That was it as far as scans go.  He also checked my CA-125 for the first couple of years.  After that, it was just exams and pap tests and asking me about any unusual symptoms. 

Since you will be coming up on your 3rd anniversary in January, I was wondering what your gyn-onc did for the first two years after you finished treatment (between January 2018 and when COVID hit in early 2020).  My gyn-onc stressed that the majority of recurrences usually occur within the first 3 years, so I would have thought your doctor might have done more in the way of follow up during the first few years after your surgery. 

I hope you are able to get to the bottom of your weight-loss and tiredness issues soon!

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

My cancer was Stage IVB, Grade 2, with LVSI and positive pelvic wash,and after treatment my gyn/onc told me that NCCN guidelines were pelvic exams every 3 months for 3 years, then 6 months thereafter.  She said no bloodwork or scans were indicated, and that symptoms would catch recurrence just as quickly as scans.  Off the record, she told me that it was not unreasonable of me to ask for a scan each year due to the advanced disease I had.  I have kept my pelvic exam appointments, and requested and gotten a scan each anniversary.  I was diagnosed in April 2017 and finished treatment October 2017.  Just wanted to let you know that it's not unusual for your doc to have the followup he does. HOWEVER, I agree with the others that you need to do the colonoscopy asap for your own peace of mind, and if you have an uneasy feeling, go get a second opinion.  You know your body and you deserve to have your questions answered.

calliegirl
Posts: 54
Joined: Jan 2018

Ladies...for all the response, advice. Interesting how ever physician treats and handles each situation differently.

I have elected to seek a second opinion and will update.

Have a blessed day!

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