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  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    Armywife, I forgot to tell

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

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    No further CT scans

    Welcome ArmyWife! I am a 9 yr survivor Stage 2 b endometrial cancer that had spread to cervix/negative 26 nodes. I had sandwich protocol Taxol/ Carbo Plus 26 radiation and 3 brachytherapy. It’s funny how I can’ t recall anymore the exact number of radiation treatments. I had CT scan the day before surgery and had a severe reaction to Mucomyst which is a pulmonary drug given “off-label” to protect my kidneys from contrast dye. Needless to say I spent the first 6 hours of the day of surgery in the ER throwing up! Enough about me- your question about CT scans- only had the one pre-operatively. My gyn/once surgeon said monitoring my symptoms was the most prudent way to go. I never had a PET scan nor CA 125 blood test. Glad you found this discussion board! An amazing group of women for sure:) 

    Lori

  • Armywife
    Armywife Member Posts: 451 Member
    edited February 2018 #24
    Hahaha!

    It's hard to come up with those headlines!  I figured it was appropriate since I've been reading every post for about 8 months and not commenting!  :)

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    Cat scans vs Pet scans

    Armywife, my first scan was a Pet scan and I am glad that I had it because I was just diagnosed and wondered if my cancer was wide spread. Picked up the report on my 61st Birthday. No spread of the cancer showed up. I found it interesting that the Pet scan picked up on other things, such as mild atherosclerosis of the aorta. It picks up on harmless junk, too, in the body. Pet scans are thousands of dollars and often insurance companies will not pay for them for uterine cancer. It will cover it for ovarian cancer. I think Cat scans are okay for surveillance. You should keep in mind that Cat scans and Pet scans expose you to radiation.  My Ca-125 has ranged from 8 to 12 over the years. It is probably not a good cancer marker for me. It seems to be more meaningful for ladies with ovarian cancer. Glad to “meet” you, too!

  • ncg007
    ncg007 Member Posts: 138 Member
    Hi Armywife

    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.

  • Cass83
    Cass83 Member Posts: 151 Member
    Armywife said:

    This is reassuring

    Thank you for the information!  I'm glad to know I'm not the only one who has a similar  care plan.  My gyn-onc isn't even planning bloodwork... May I ask if you have family members who have had Lynch-related cancers?  My grandma had colon cancer in the 1970s but had surgery only and lived another 25 years.  She's the only one I know of, but I have two second cousins (or first cousins once removed - I'll never understand all that) who've had endometrial cancer - one on each side of the family.  One died within months, and the other one was diagnosed at the same time I was and had surgery only.  

    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. 

  • Hopeful162
    Hopeful162 Member Posts: 82
    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!

    Follow-up

    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
    Armywife Member Posts: 451 Member

    Follow-up

    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.

    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
    Armywife Member Posts: 451 Member
    ncg007 said:

    Hi Armywife

    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.

    Thank you!

    I'm so happy to hear that you have done well, and really sorry that you have the damage from radiation.  You are brave!  I sure know that pelvis-out-of-alignment pain.  It happened to me during chemo once and thankfully a wonderful physical therapist was able to help.  I'm sorry you're having the twinges and pains, but I do take comfort in knowing I'm not the only one.  

  • Armywife
    Armywife Member Posts: 451 Member

    No further CT scans

    Welcome ArmyWife! I am a 9 yr survivor Stage 2 b endometrial cancer that had spread to cervix/negative 26 nodes. I had sandwich protocol Taxol/ Carbo Plus 26 radiation and 3 brachytherapy. It’s funny how I can’ t recall anymore the exact number of radiation treatments. I had CT scan the day before surgery and had a severe reaction to Mucomyst which is a pulmonary drug given “off-label” to protect my kidneys from contrast dye. Needless to say I spent the first 6 hours of the day of surgery in the ER throwing up! Enough about me- your question about CT scans- only had the one pre-operatively. My gyn/once surgeon said monitoring my symptoms was the most prudent way to go. I never had a PET scan nor CA 125 blood test. Glad you found this discussion board! An amazing group of women for sure:) 

    Lori

    9 years!!

    What an incredible encouragement it is to see you write 9-year survivor!!  I have never heard of Mucomyst and I appreciate the heads-up about it because I can totally see it being offered to me as my kidneys haven't been as happy as I'd like.  Thank you for the welcome and the information!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    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

    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

  • Soup52
    Soup52 Member Posts: 908 Member

    Armywife, do you know what

    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

    Compression stockings, yes I

    Compression stockings, yes I agree with no time. Check the website or go to a local medical supply store where they will measure you and instruct you on how to put them on etc. That’s what I have done. I’m using them now because of my knee replacement surgery. Best of luck:)

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited February 2018 #34
    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. 

    Lynch ancestors

    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.

  • Hopeful162
    Hopeful162 Member Posts: 82
    edited February 2018 #35
    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!

    Putting those stockings on!

    Yes, I have gotten very good (if I don't say so myself) about getting the stockings on these days. The trick is to turn them right side up, then fold them down so that just the inside of the heel area is showing. Then with my foot on the floor, slip the toes in right side up. Then put your fingers next to your ankles and work up from the heel while unfolding them. Finally, use special rubber gloves to smooth them out. Sounds more complicated than it is. There might be an explanation of this on line. My PT person showed me. Good luck.

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    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!

    Compression socks

    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.