Long Time Listener, First Time Caller

Armywife, I forgot to tell you, LOVE your thread title!

Hi Armywife,   Sorry you have had to join us.  My cancer was found due to cramping post-menopausal.  Upon diagnosis and prior to hysterectomy, Aug 2015,  I did have a CT (abdomen, pelvis, chest).  Diagnosed with Stage IIIC1, High Grade 3, Mixed 50% EAC and 50% UPSC.  I did obtain multiple opinions for both path diagnosis and treatment.  Treatment plan was aggressive with concurrent chemo & radiation, 2 rounds Cisplatin 3 weeks apart along with 28 external radiation treatments.  This was followed by 4 more chemo rounds of Carbolplatin/Paclitaxel.  

After completing treatment Feb 2016, my follow up care continues to be Onc visit every 3 months for pelvic exam and blood work.   The CA-125 is not a good marker for me, I stay in the range of 12-16.   I have had 2 more annual CT scans only because of a few suspicious areas.  My last was Oct 2017 and Onc has said since there has been no changes in these suspicious areas, he will not order another CT unless symptoms. I too have the twinges and pains that didn't exist pre-cancer, so hard to tell if it's a real symptom or not.  Radiation was not too kind to me as I have been left with spinal nerve damage that affects my back and down my left side (hip-toes), a weakened pelvis that often gets out of alignment which is extremely painful, and PRD.  Sometimes I question if the radiation was worth it, and the answer always is yes because I am NED.  I wish you all the best.

Armywife said:

Encouraging!

Thank you for sharing.  I'm glad to know you're clear and thriving!  How many lymph nodes did you have removed, and how soon after surgery did you develop the lymphedema?  My surgeon took one pelvic and one paraaortic node - sentinel nodes, I think she called them.  They were clear.  She said I would probably not have lymphedema because she didn't remove a lot of nodes, but I do seem just a little swollen at the knees and ankles - of course this could be due to the fact that I'm way more sedentary than I should be!

Sorry for the late reply to your question. I don't get on this site so often anymore. I had 13 lymph nodes removed as my doctor told me he does not do just sentinel nodes. They were all clear, but the result has been off and on swelling in my left calf and ankle starting about four months out. I did get some physical therapy and was shown some wrapping and massage techniques, but nowadays I just wear very strong knee length compression stockings for a few days when I notice increased swelling. There is always a little swelling in that leg. I really didn't anticipate that result, but sometimes it happens.

Armywife said:

Thank you!

Hopeful, thank you!  I have pondered asking the MD Anderson doc if she would have taken more than just the sentinel lymph nodes had she been my surgeon - but we can't go back, I guess.  Any tips for getting those compression stockings on?  My doctor gave me a pair and I literally can't get them over my foot - my fingers feel like they're going to break as I try to pull them on!

Armywife, do you know what "strength" the stocking are?  I had a physical therapy help train me, since she measured me for them, and she recommended latex gloves to help grab them.  I have 30-40 compressions, pretty intense, and you want to make sure they don't have kinks or have folds in them on your leg.  I found this link, which is pretty much what I was told as well.

https://youtu.be/KGQWR_WsPS0

Cass83 said:

not sure where Lynch came from

Hi, I don't really know if the cancers in my family are Lynch related (other than mine) My mother had and died of cervical cancer, her mother also had and died of cervical cancer, 1st cousin died of esophageal. On my fathers side I have a 2nd cousin with Leukemia, had an aunt that died of Lymphoma and Leukemia, and one 1st cousin with with gliobastoma (which could possibly be Lynch). Lots of cancer in my family, but since both of my parents are no longer living and I have no 1st degree relative, we  don't know which side of the family my Lynch comes from. 

I haven't received the results yet from my test for Lynch syndrome, but for anyone reading this, if you're very curious about family history with cancer and don't have any living relatives to tell you, there are still some ways to find out.

For example, I've traced colon and stomach cancer on my Scottish side -- in every single generation beginning with my great great grandmother, who died of it in 1854. It turns out that Scotland reported cause of death on death certificates beginning about 1800. It was such a clear pattern, and I've had several cousins with colon cancer, that I've been getting colonoscopies since I was 40. All clear but sadly, no one ever mentioned Lynch syndrome and the fact that the gene mutation can also cause endometrial cancer. I only discovered that after being diagnosed with endometrioid adenocarcinoma.

Anyway, if you're really interested, and the country your ancestors hail from reported cause of death through generations, then these records may not be terribly hard to find and track.

Armywife said:

Thank you!

Hopeful, thank you!  I have pondered asking the MD Anderson doc if she would have taken more than just the sentinel lymph nodes had she been my surgeon - but we can't go back, I guess.  Any tips for getting those compression stockings on?  My doctor gave me a pair and I literally can't get them over my foot - my fingers feel like they're going to break as I try to pull them on!

i found a good trick with compression socks (if they have open toes).  Put a ziplock bag on your foot and the sock will go on much easier.  Once the sock is on, pull the bag off at the toe.  I had to put these on my mother after her hip replacement surgery.  I would literally be in tears trying to get them on her.