Recurrence Symptoms

calliegirl
calliegirl Member Posts: 54
edited April 2019 in Uterine Cancer #1

Hello fellow members...hoping everyone is staying strong, and well.

It has been sometime since my last posting. I have a question and hoping to get some insight.

I was wondering what are the recurrence symptoms of endometrial cancer. I have been experiencing pain and burning sensations up in my vaginal canal area, same area I was experiencing prior to my dx.

I was dx with stage 1, endometrial cancer - adenocarcinoma with lymphvascular invasion - intermediate level of invasion as per my pathology , report.

My gyno/oncologist along with a tumor board - report suggested only observation. Therefore, just coming in for my follow up appointments.

I will admit I have recently put off my last follow up appointment because I feel there is not much they can do for me at this time. Given he stressed I was stage 1 and the recurrence rate is low.

I just find it odd because I have research that recurrence with stage 1 adenocarcinoma w/ lymphvascular invasion , if it does return can have poor prognosis. (Again that's on the internet).

My last CT scan showed a 2 cm lesion on my liver on the right side, and another lesion on the other side that accordingly to radiologist to small to caterogize. My oncologist suggested to wait and see before they investigate further.  The lesion that is now 2cm was 5 mm before. So it has grown in size and I am wondering if its benign or related to the endometrial cancer?

 

All in all, I am worried if these symptoms of discomfort are a recurrence, because I understand , if does re-occur the vaginal cuff is usually the first area. Thoughts? comments? Advice?

Much appreciated.

Hugs and sunshine to you from Florida : )

Comments

  • EZLiving66
    EZLiving66 Member Posts: 1,476 Member
    Get yourself to your

    Get yourself to your oncologist!! I have not had a recurrence but your symptoms are the exact ones my oncologist said to look for.  I hope it's not a recurrence but the sooner it's tested,  the easier it is to take care of it.

    Good luck!

    Love,

    Eldri

  • calliegirl
    calliegirl Member Posts: 54

    Get yourself to your

    Get yourself to your oncologist!! I have not had a recurrence but your symptoms are the exact ones my oncologist said to look for.  I hope it's not a recurrence but the sooner it's tested,  the easier it is to take care of it.

    Good luck!

    Love,

    Eldri

    Thank you Eldri, for your

    Thank you Eldri, for your prompt response. I am worried. I agree I will go see my oncologist , I just hope it's nothing...but I have a suscipion is might be unfortunately otherwise.

    I hope you are doing well.

    Much love back, Elena.

  • Tamlen
    Tamlen Member Posts: 342 Member
    Absolutely, do what Eldri said

    Lymphovascular invasion is nothing to fool around with, even if you're Stage 1. Try to get in as soon as you can -- and if it's nothing, then you'll have your peace of mind. Good luck!

  • MAbound
    MAbound Member Posts: 1,164 Member
    2nd opinion

    I'm with Tamlen. Lymphovascular invasion, even at stage one, is always concerning. If you get the let's-wait-and-see advice again, my advice is that it would be time to go for a 2nd opinion from someone unconnected to who you are seeing now. As the victim of a wait-and-see doctor myself, I just get goosebumps when somebody else is being cared for this way. Frontline treatment is the time to throw the kitchen sink at this beast whatever stage or type you have. 

  • jan9wils
    jan9wils Member Posts: 179 Member
    I was diagnosed stage 1B

    I was diagnosed stage 1B Grade 2 with lymphovascular invasion in 2014.  Please insist on a CT/biopsy or PET if your Dr doesn't already have it ordered. Your symptoms and pain are enough to warrant it. I know I'm not a typical case, but I've just experienced my 4th recurrence. It took me awhile to realize that for people lliving with cancer there is no such thing as a simple ear ache, sinus infection or tummy ache. My gyn/onc is a lets take a look now and know what this is kind of doctor and I am grateful for that. He has saved my life more than once!

  • calliegirl
    calliegirl Member Posts: 54
    Thank you

    Thank you ladies for your advice. I feel pressure down there, and discomfort, with burning. It is so very strange. I called and made an appointment to see a gyno tomorrow  who will refer me to a new gyno/oncologist. Apparently, I need the referral even though I have PPO insurance, because another gyno/oncologist surgeon did the procedure.

    Frustrating...anyhow...I have my fingers crossed.

    Again many many thanks and I am thinking to request a PET scan as well.

    Big hugs ! Elena

  • Kaleena
    Kaleena Member Posts: 2,066 Member

    hi Callie 

    ive been through this.   I’ve been on a wait and see for awhile.  With my first recurrence I am the ine who noticed it.   It was about 4 years after my initial diagnosis.  For me it was pain.  It started slowly where I would need Motrin once or twice a week.  When I was taking it daily that’s when I pushed for more testing.  Ihad a positive biopsy and then surgerY.   However the mass tested negative at removal and one lymph node was positive.  I had no treatment just wait and see.   Same thing happened again with pain.  i was on daily Motrin and had gotten a cat scan indicating tumor and another one and my gyne onc didn’t examine me.  He indicated stomach massages.  I then went to another doctor who just wanted to wait and see and I met with a new gyne onc who sent me for another biopsy.   This was positime so I had surgery again.  Positive tumor with bowel removal.  Positive tumor near vaginal  and a positive lymph node.   Still no treatment.  Just wait and see.   This last surgery was last year

     

    orginal diagnosis was in Sept 2005  Stage3a Grade 2  endometrial adenocarcinoma 

     

     

  • calliegirl
    calliegirl Member Posts: 54
    Kaleena said:

    hi Callie 

    ive been through this.   I’ve been on a wait and see for awhile.  With my first recurrence I am the ine who noticed it.   It was about 4 years after my initial diagnosis.  For me it was pain.  It started slowly where I would need Motrin once or twice a week.  When I was taking it daily that’s when I pushed for more testing.  Ihad a positive biopsy and then surgerY.   However the mass tested negative at removal and one lymph node was positive.  I had no treatment just wait and see.   Same thing happened again with pain.  i was on daily Motrin and had gotten a cat scan indicating tumor and another one and my gyne onc didn’t examine me.  He indicated stomach massages.  I then went to another doctor who just wanted to wait and see and I met with a new gyne onc who sent me for another biopsy.   This was positime so I had surgery again.  Positive tumor with bowel removal.  Positive tumor near vaginal  and a positive lymph node.   Still no treatment.  Just wait and see.   This last surgery was last year

     

    orginal diagnosis was in Sept 2005  Stage3a Grade 2  endometrial adenocarcinoma 

     

     

    thank you Kaleena

    for your response, I will be seeing my gyno/oncologist next week. Hoping for good news. My concern is I am experiencing pain, and burning together in the exact spot prior to my dx

    I was dx endometrial adenocarcinoma stage 1 with lymphvascular invasion, surgery was the only form of treatment...I'm worried if it is back...I will need radio/chemo?

  • Kaleena
    Kaleena Member Posts: 2,066 Member

    thank you Kaleena

    for your response, I will be seeing my gyno/oncologist next week. Hoping for good news. My concern is I am experiencing pain, and burning together in the exact spot prior to my dx

    I was dx endometrial adenocarcinoma stage 1 with lymphvascular invasion, surgery was the only form of treatment...I'm worried if it is back...I will need radio/chemo?

    I did chemo as a precaution

    I did chemo as a precaution and then did 3 brachytherapy.  They weren’t sure were my cancer originated from.  Had it in my uterus cervix and left ovary.  So they treated it as ovarian.   But that is the o my treatment I have had in 13 years other than surgeries

    also you have to be your own advocate.  

    my Best to you

    kathy