Let's have a roll call!

135678

Comments

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    #42
    JillAndrea said:

    I am very interested in your

    I am very interested in your journey, as I have the same stage/grade as your original diagnosis.  What kind of surveillance did you have before your recurrance?  They tell me I will only be surveilled  for 5 years.  When did you learn about your recurrance, and how was it identified?  I do wish you well in your treatment and hopeful recovery.

    Jill

    Five years surveillance

    JillAndrea, I'm sorry you have had this diagnosis and have had a difficult recovery. Thank you for your good wishes.  I was followed every three months for the first two years, then changed to six months.  After two years I had a CT scan due to hip pain, which was negative. After five years I was released from the cancer center.  The hip pain continued intermittently, and eventually I went to my orthopedic doctor, who ordered an MRI that revealed the recurrence. (They went back and looked at the CT but still could find nothing on it.)

  • MAbound
    MAbound Member Posts: 1,168 Member
    #43
    JillAndrea said:

    I am very interested in your

    I am very interested in your journey, as I have the same stage/grade as your original diagnosis.  What kind of surveillance did you have before your recurrance?  They tell me I will only be surveilled  for 5 years.  When did you learn about your recurrance, and how was it identified?  I do wish you well in your treatment and hopeful recovery.

    Jill

    Hormone Driven Cancer

    For those of us who are diagnosed with the hormone (metabolic) driven types of uterine cancer, I think it really helps to learn the known risk factors for it and figure out which apply to us as individuals so that we might have a chance at impacting (reducing) our odds of recurrence post-treatment. 

    It is beneficial to continue learning about this disease even after treatment because there are many moving pieces to it that we can have some control over. I'm talking about things like genetic/genomic testing, reducing exposure to endocrine disruptors, excercising, improving diet and taking supplements with guidence along with watchful monitoring that includes managing the metabolic components that can facilitate future cellular mutations. The battle against the beast doesn't just end with treatment and it is empowering to understand what the hell happened and be able to be pro-active towards preventing recurrence.

    This is a cancer that hits many of us out of the blue because education about it and screening tests like there are for breast and cervical cancer is lacking. One of the things that makes me the most angry is that my primary doctor never even mentioned the potential for uterine cancer when I was years late for menopause depriving me of the opportunity to look into it myself and ask questions that might have prodded her into catching my cancer earlier. I've come to accept since then that there is no such thing as a general doctor or specialist that knows everything about everything and that it is my responsiblity not to be a passive patient. Medical science is constantly changing, so the need to keep learning will never stop when you get a diagnosis like this. 

     

  • JillAndrea
    JillAndrea Member Posts: 30
    #44
    Fridays Child said:

    Five years surveillance

    JillAndrea, I'm sorry you have had this diagnosis and have had a difficult recovery. Thank you for your good wishes.  I was followed every three months for the first two years, then changed to six months.  After two years I had a CT scan due to hip pain, which was negative. After five years I was released from the cancer center.  The hip pain continued intermittently, and eventually I went to my orthopedic doctor, who ordered an MRI that revealed the recurrence. (They went back and looked at the CT but still could find nothing on it.)

    Thank you Friday's Child.  It

    Thank you Friday's Child.  It is so unsettling to hear about your late recurrance. I have been doing a lot of reading, and I seem to be encountering so many stories about recurrance, which makes me wonder if the published stats are correct. 

    I was told my recurrance risk is 7%, but that drops to 3% if I have the brachytherapy right away.  It is still not clear to me how they can even detect a recurrance, especially if it could be anywhere in the body.  My doctors have said thing like "we know which types of cancers spread to specific areas of the body" but I did not know uterine cancer could spread to the lungs.

    My mom has had cancer 3 times, but none were recurrences. Her first cancer was adenocarcinoma in her left lung, which was surgically removed, and essentially cured, though she now has COPD at age 87..  I have always been concerned about that.  I'm having genetic testing done and will get those results in about 3 weeks.

    Thank you for sharing.  I am so happy to have found this forum.

     

    Jill

  • Sunrise19
    Sunrise19 Member Posts: 27 Member
    #45
    Roll Call

    Hi All! I'm long overdue to send an update but just recently had thyroid surgery, so was not sure about outcome, until now...

    1. Serous Uterine Cancer, Stage 1A, Grade 3. Diagnosed 11/2018. Surgery 12/24/19 (date easy to remember, and hospital fairly empty;)

    2. Treatment after surgery was brachy radiation and chemo. Unable to finish last 1-2 treatments due to very low cell counts, neuropathy in feet, and some hearing loss with tinnitus. All treatments completed by April with CT Scan, where it was noted that there was posssible thyroid cancer with nodules. Had 2nd and 3rd opinions on thyroid surgery over a 6 month period with ultrasounds, e rays, exams etc. Finally decided on surgery although it seemed it was 70% yes cancer but 30% no. Seems that there is not a definite test for some thyroid cancers until they take it out to biopsy and check surrounding area and lympth nodes.

    3.Recovering from a successful thyroid  surgery. Yes, it was cancer but found no lymph node involvement. Also not serous cell. Uterine cancer is Ned, with next check in April. 

    4. Have discoved that I'm stronger than I realized. Immediate family is very supportive along with 2 bestie friends. And, this forum can be a life line for venting and hope. I asked my oncologist "why" there is no specifics on foods, supplements, alternatives, etc etc. The answer left me with discomfort. This is considered a rare cancer population wise, also a female cancer :(  and not enough research with not enough population for large trials etc. etc So, I asked IF more data might help? Yes, find the surviors and list what they are doing, injesting, trying etc etc That could add to our research. Although not formal data, it will be by association. I'm interested and actually, 6 months ago, read many of your notes and started foods, vitamins exercises that many of you thought were helpful. This might be good for newbies too, cause it took me a month to find and note all the many suggestions. Any interest? It could simply be like this role call with a disclaimer that there is no formal "proof" that these items help, except by personal report. Maybe I'll list under new topic?

    Glad to still wake for sunrise!

     

  • MAbound
    MAbound Member Posts: 1,168 Member
    #46
    Sunrise19 said:

    Roll Call

    Hi All! I'm long overdue to send an update but just recently had thyroid surgery, so was not sure about outcome, until now...

    1. Serous Uterine Cancer, Stage 1A, Grade 3. Diagnosed 11/2018. Surgery 12/24/19 (date easy to remember, and hospital fairly empty;)

    2. Treatment after surgery was brachy radiation and chemo. Unable to finish last 1-2 treatments due to very low cell counts, neuropathy in feet, and some hearing loss with tinnitus. All treatments completed by April with CT Scan, where it was noted that there was posssible thyroid cancer with nodules. Had 2nd and 3rd opinions on thyroid surgery over a 6 month period with ultrasounds, e rays, exams etc. Finally decided on surgery although it seemed it was 70% yes cancer but 30% no. Seems that there is not a definite test for some thyroid cancers until they take it out to biopsy and check surrounding area and lympth nodes.

    3.Recovering from a successful thyroid  surgery. Yes, it was cancer but found no lymph node involvement. Also not serous cell. Uterine cancer is Ned, with next check in April. 

    4. Have discoved that I'm stronger than I realized. Immediate family is very supportive along with 2 bestie friends. And, this forum can be a life line for venting and hope. I asked my oncologist "why" there is no specifics on foods, supplements, alternatives, etc etc. The answer left me with discomfort. This is considered a rare cancer population wise, also a female cancer :(  and not enough research with not enough population for large trials etc. etc So, I asked IF more data might help? Yes, find the surviors and list what they are doing, injesting, trying etc etc That could add to our research. Although not formal data, it will be by association. I'm interested and actually, 6 months ago, read many of your notes and started foods, vitamins exercises that many of you thought were helpful. This might be good for newbies too, cause it took me a month to find and note all the many suggestions. Any interest? It could simply be like this role call with a disclaimer that there is no formal "proof" that these items help, except by personal report. Maybe I'll list under new topic?

    Glad to still wake for sunrise!

     

    Hmmm

    First of all, it's so good to hear from you again! I'm so glad that you went ahead with the surgery since it turned out to actually be cancer. It sure is a persistent beast, isn't it?

    I've recently started making documents for myself, too, trying to synthesize of lot of what I've learned on different issues from here and other sources because it's so hard to slog through past posts, studies, and other sources when I need to revisit things. It's going to take me a while. I really had no idea how big the learning curve would be when I first came here and wish I had been doing this all along. If only I knew then what I do now! Isn't that how it always goes? 

    It would be nice if we could put together some kind of electronic welcome packet to email newcomers because I remember that feeling of not being able to learn what I needed to know fast enough to get me through diagnosis (tests, waiting, anxiety), surgery (Gas X, belly binders!), recovery (really...don't lift, get up and walk), and treatment (icing! hold the antioxidants! watermelon!) with as little trauma and permanent damage as possible.  It all certainly felt overwhelming in the beginning. There's a lot of good experience and information here, but it's all over the place and not so easily found given the search engine we have and how active this group is. I'm not so sure a new thread would work unless we could pin it at the beginning and could somehow divide and maintain it with different topics that could be kept together and refined over time. 

    It's a really interesting idea, but it would be a big project to organize and execute while dealing with where we are and the other demands of life. There's so much here that it's like we have all written a really informative but disorganized book. I can see the need for such a book, though.

     

  • Sunrise19
    Sunrise19 Member Posts: 27 Member
    #47
    MAbound said:

    Hmmm

    First of all, it's so good to hear from you again! I'm so glad that you went ahead with the surgery since it turned out to actually be cancer. It sure is a persistent beast, isn't it?

    I've recently started making documents for myself, too, trying to synthesize of lot of what I've learned on different issues from here and other sources because it's so hard to slog through past posts, studies, and other sources when I need to revisit things. It's going to take me a while. I really had no idea how big the learning curve would be when I first came here and wish I had been doing this all along. If only I knew then what I do now! Isn't that how it always goes? 

    It would be nice if we could put together some kind of electronic welcome packet to email newcomers because I remember that feeling of not being able to learn what I needed to know fast enough to get me through diagnosis (tests, waiting, anxiety), surgery (Gas X, belly binders!), recovery (really...don't lift, get up and walk), and treatment (icing! hold the antioxidants! watermelon!) with as little trauma and permanent damage as possible.  It all certainly felt overwhelming in the beginning. There's a lot of good experience and information here, but it's all over the place and not so easily found given the search engine we have and how active this group is. I'm not so sure a new thread would work unless we could pin it at the beginning and could somehow divide and maintain it with different topics that could be kept together and refined over time. 

    It's a really interesting idea, but it would be a big project to organize and execute while dealing with where we are and the other demands of life. There's so much here that it's like we have all written a really informative but disorganized book. I can see the need for such a book, though.

     

    Hmmm, lots of info

    Good to hear from you! Yes, so much info but hard to put it together. Let me think on it a bit and maybe we could come up with a simple intro letter for the new gals and a simple questionaire with infor that anyone could use, if they wish!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #48
    mamlicsw said:

    Stage and grade of Cancer:

    Stage and grade of Cancer: Stage 1a, grade 3 undifferentiated cancer.  Diagnosed April, 2019 at age 69.  I live in Dedham, MA, which is a suburb of Boston.

    Treatment:  DaVinci robotic hysterectomy on April 30th.  I had 6 chemo treatments with Carboplatin only as I already had very mild neuropathy and balance issues, which my Onc didn't want to make worse.  Had to delay some of the treatments due to neutropenia.  Just had my last of six brachytherapy treatments today.  My last CT was after my 3rd chemo and I was NED at that point.  Will follow up with regular exams and blood work.  It's unfortunately left me feeling like a physical wreck compared to how active I was previously.  I hope to try to get back to the gym for at least a short period of time later this week.  I'm having trouble accepting my ongoing anemia and overall weakness and lack of stamina.  

    Current Status:  I believe I'm probably NED still but very concerned about recurrence.  It was reassuring to learn that so many of you are also grade 3 and still here after a few years.

    Other Comments:  I don't contribute very much but I check in pretty regularly.  This site has been so helpful in terms of making me feel less isolated.  I don't know anyone else with uterine cancer so there's been no one in my orbit to speak with informally about the experience.  Thanks to everyone who does contribute. You probably don't realize how many other people you are helping.  Mary Ann

    Mary Ann, the radiation

    Mary Ann, the radiation kicked me in the butt!  I had fatigue like I never experienced, so feeling pretty run down after just finishing radiation sounds right.  You have the right idea to start back at it slowly, and you just need to take care of yourself and give it some time.  Be kind to yourself and give yourself some time.  Hugs.

  • JillAndrea
    JillAndrea Member Posts: 30
    #49
    Hi Everyone, I'm new here.

    My name is Jill, and I am currently in treatment for endometrial adenocarcinoma, Stage1a, Grade2.

    It all started for me back in August when I had unexplained gut-wrenching pain in my upper left abdomen along with heavy pelvic pressure, a low grade fever, low back pain, and vaginal bleeding. My OBGYN started with a transvaginal ultrasound which showed Hyperplasia (14mm lining). Next they did a uterine biopsy in September which came back clear of cancer but positive for Hyperplasia. They scheduled a D&C in November and the cancer was found. I was officially diagnosed on November 20. I'll never forget receiving the call that I had to come in that day.  I knew then. I am also mentioning this to everyone because a negative biopsy does not always mean you dont have cancer.

    On Dec 27 I had a radical hysterectomy (uterus, cervix, ovaries, and fallopian tubes were removed) and lymph node disection (they removed several lymph nodes from different areas). My cancer (adenocarcinoma) was surgically staged at 1A, which means it was contained within the uterus and invasion of the myometrium was less than 50%. The cancer found in the D&C was FIGO grade 2, but the surgical pathology only found FIGO grade 1, however the final diagnosis is based on the highest grade found, so I am officially grade 2.  Based on this, and that the cancer was found in the lower segment of my uterus, I will need brachytherapy radiation, which is scheduled for March... 5 treatments over 2 1/2 weeks.  I am very scared and hope others can share their bracytherapy experiences. I am also having genetic testing to rule out Lynch Syndrome, and will have 5 years of surveillance before I am officially cancer free.

    I am 4 weeks post-op, and I have to say the recovery from the hysterectomy has been extremely difficult. I had the DaVinci Robotic Laprascopic procedure. I had extreme pain for the first two weeks during which I was unable to walk, move, shower, or go to the bathroom independently. I was not prepared for that at all.  The gas has been horrible... I gained 22 lbs the day after the surgery and the gas pressure busted open one of my incisions 2 days after I was home. Now 4 weeks later I have finally lost 17 of those lbs. For the entire 4 weeks I have experienced excruciating pain whenever I urinate, have a bowel, or pass gas, although that seems to finally be backing off these fast few days. They tell me it is from inflamation of the vaginal cuff which is still healing. Again, nobody prepared me for any of these post-surgery symptoms, and it has been frustrating to me. Hopefully it's all uphill from here!

    It's very nice to meet everyone.  Looking forward to sharing.

     

    Jill

     

  • Ribbons
    Ribbons Member Posts: 154 Member
    #50
    checking in

    I haven't been on here for a while so thought I would just do an update. Cancer was stage 1a and grade 3, clear cell. Total hysterectomy in Oct of 2018. 6 rounds of chemo, carbo/taxol. Finished that on Feb 15, 2019. So almost one year from my last chemo!! Followed up with 3 brachytherapy treatments. I hate that dilator, and have been questioning my decision to have brachy but after reading things on here again, I guess it was a good decision. I go for check ups every 3 months, so far I am fine. I only have mild neuropathy in 3 toes, but my fibromyalgia is a little worse than it was before chemo. My hair is about 5" long now and still super curly! People want to know where I got my perm and I say it took a long time and was really expensive, so I wouldn't recommend it!   I live in Western Oregon, and I keep busy with my horses and 2 dogs. I have a super husband and 3 grown kids who are all great. O and I am 67. Wish I knew if there were more people on here from Oregon.

  • JillAndrea
    JillAndrea Member Posts: 30
    #51
    Ribbons said:

    checking in

    I haven't been on here for a while so thought I would just do an update. Cancer was stage 1a and grade 3, clear cell. Total hysterectomy in Oct of 2018. 6 rounds of chemo, carbo/taxol. Finished that on Feb 15, 2019. So almost one year from my last chemo!! Followed up with 3 brachytherapy treatments. I hate that dilator, and have been questioning my decision to have brachy but after reading things on here again, I guess it was a good decision. I go for check ups every 3 months, so far I am fine. I only have mild neuropathy in 3 toes, but my fibromyalgia is a little worse than it was before chemo. My hair is about 5" long now and still super curly! People want to know where I got my perm and I say it took a long time and was really expensive, so I wouldn't recommend it!   I live in Western Oregon, and I keep busy with my horses and 2 dogs. I have a super husband and 3 grown kids who are all great. O and I am 67. Wish I knew if there were more people on here from Oregon.

    Ribbons,  I love your

    Ribbons,  I love your response to the perm question!  I'm not from Oregon, but my mother in law lives in Depot Bay, right on the water.

    Can you share why you hate the dialater?  I am starting brachy in March.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #52
    JillAndrea said:

    Ribbons,  I love your

    Ribbons,  I love your response to the perm question!  I'm not from Oregon, but my mother in law lives in Depot Bay, right on the water.

    Can you share why you hate the dialater?  I am starting brachy in March.

    JillAndrea, the FUNNIEST

    JillAndrea, the FUNNIEST experience is when I travel with the dialator.  One time my bag got pulled aside and I am thinking...Uh oh, I know what they see!!!  I flat out told the guys, "I know what you are wondering about, they are dialators.  I had uterine cancer and I have to use those."  Ha!  I had lost all modesty and it was my way of educating folks about gyn cancer. 

    Usually the replies I get after poeple look at my horrific passport pictue when my hair was growing back and the curls had it glued to my head, and they hear I had cancer, "But you are ok now?"  Which is very sweet.  

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    #53
    Stage 1A UPSC

    1. Stage1A & Grade 3 serous

    2. Open complete hysterectomy with 4 lymph nodes, LVSI neg, pelvic wash neg. in May 2017. After 2nd opinion and new GYN/oncologist I had 3 taxol/Carbo chemo and 6 brachytherapy from Oct 2017 thru Jan 2018.

    3. Diagnosed with recurrence in lymph nodes in abdomen, chest & thorax in Aug 2019. Did 6 Taxol/Carbo ending Dec 2019. PET scan 2 weeks ago shows most lymph nodes have shrunk, 2 have grown and 2 new ones. Will have another PET in March and find out where we go from here.

    4. This is an incredible journey that has given me a closer relationship with my God. I am blessed to have found this site and learned so much from the sweet, kind ladies on here. I am struggling some right now trying to find my new normal. Staying busy doing things I love and helping others when I can does help. 

  • ncg007
    ncg007 Member Posts: 138 Member
    #54
    Still hanging in here

    1.  Type:  June 2015, Stage IIIC1, High Grade 3, Mixed 50% Endometrioid Adenocarcinoma (EAC) and 50% Uterine Serous Carcinoma (UPSC)

    2.  Treatment: September-October 2015 Concurrent chemo & radiation, 2 rounds Cisplatin 3 with 28 external radiation treatments.  December 2015 - February 2016, 4 rounds of carboplatin/paclitaxel.

    3:  Current Status:  4 years remission.  Dealing with many issues related to Pelvic Radiation Disease; lymphedema, neuropathy, bowel, pelvis.

    4:  Obtain additional consultations from both Gyn & Radiation Oncologists on Pathology Report and treatment plan.  As bad or tired that you may feel, get up and exercise or do simple Yoga stretches.  I really regret not doing so for the 5+ months I was undergoing treatment, and believe this neglect has contributed to the deterioration of my body. 

  • Rosesforever
    Rosesforever Member Posts: 44 Member
    #55
    Long painful journey

    Hi all,  I haven't posted for awhile but I follow when I can. 
    At 73, 2/2/18 I had a radical hysterectomy dx 3B grade 1 followed by 25 external radiation & 1 brachytherap (biggest mistake I ever made)

    I've had radiation cystitis followed by HBOT. I've had 17 UTIS in 2 years which are debilitating

    My bladder is ridged and hard my urethra is damaged. I've had Botox to Relax & increase my bladder capacity and coaptite to close my urethrea. The Botox didn't work but the coaptite has given my leaking some relief but I have to self cath. I have been advised by 3 urologist to have a bladder diversion for quality of life (?) Which I currently Am choosing not to do. Oh, and I also have fecal incontinence.  
    I am now faced with hydronephrosis due the strictures in my right ureter. I've had a stent inserted which hurts like the dickens all the time. I'm scheduled to have my stent changed to a shorter one in hopes it will relieve the pain in my couch. Last week I was told my right kidney is functioning at 18% and may have to be removed. 

    whether these side effects are due to the surgery or radiation I'm unclear,, but used to be the energizer bunny I'm now a sloth  

    My last Oncologist appointment showed NED

    when folks ask about radiation I want to say "RUN " but I also know all my side effects are considered rare, lucky me,, wish I could win the lottery with this luck  

    I'm sure I've left something out but I did want to check in  
    I wish you all comfort, peace, good health and much happinless!!

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #56
    Rosesforever said:

    Long painful journey

    Hi all,  I haven't posted for awhile but I follow when I can. 
    At 73, 2/2/18 I had a radical hysterectomy dx 3B grade 1 followed by 25 external radiation & 1 brachytherap (biggest mistake I ever made)

    I've had radiation cystitis followed by HBOT. I've had 17 UTIS in 2 years which are debilitating

    My bladder is ridged and hard my urethra is damaged. I've had Botox to Relax & increase my bladder capacity and coaptite to close my urethrea. The Botox didn't work but the coaptite has given my leaking some relief but I have to self cath. I have been advised by 3 urologist to have a bladder diversion for quality of life (?) Which I currently Am choosing not to do. Oh, and I also have fecal incontinence.  
    I am now faced with hydronephrosis due the strictures in my right ureter. I've had a stent inserted which hurts like the dickens all the time. I'm scheduled to have my stent changed to a shorter one in hopes it will relieve the pain in my couch. Last week I was told my right kidney is functioning at 18% and may have to be removed. 

    whether these side effects are due to the surgery or radiation I'm unclear,, but used to be the energizer bunny I'm now a sloth  

    My last Oncologist appointment showed NED

    when folks ask about radiation I want to say "RUN " but I also know all my side effects are considered rare, lucky me,, wish I could win the lottery with this luck  

    I'm sure I've left something out but I did want to check in  
    I wish you all comfort, peace, good health and much happinless!!

     

    Stents

    Hi Roses. I'm sorry you're suffering so much. I suffered with stents for a year and it destroyed my cancer free quality of life for that year. I truly know how you feel. I finally resorted to ureter surgery and to make a long and painful story short, it failed. Now I am left with a nephrostomy and I can honestly say it's not so bad. Definitely better than stents. If you want more info feel free to email me. Good luck to you. Susan

  • Rosesforever
    Rosesforever Member Posts: 44 Member
    #57
    CheeseQueen57 said:

    Stents

    Hi Roses. I'm sorry you're suffering so much. I suffered with stents for a year and it destroyed my cancer free quality of life for that year. I truly know how you feel. I finally resorted to ureter surgery and to make a long and painful story short, it failed. Now I am left with a nephrostomy and I can honestly say it's not so bad. Definitely better than stents. If you want more info feel free to email me. Good luck to you. Susan

    Thank you

    This is a nightmare. I have emailed you I have so many questions.  Thank you again. 

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #58
    JillAndrea said:

    Hi Everyone, I'm new here.

    My name is Jill, and I am currently in treatment for endometrial adenocarcinoma, Stage1a, Grade2.

    It all started for me back in August when I had unexplained gut-wrenching pain in my upper left abdomen along with heavy pelvic pressure, a low grade fever, low back pain, and vaginal bleeding. My OBGYN started with a transvaginal ultrasound which showed Hyperplasia (14mm lining). Next they did a uterine biopsy in September which came back clear of cancer but positive for Hyperplasia. They scheduled a D&C in November and the cancer was found. I was officially diagnosed on November 20. I'll never forget receiving the call that I had to come in that day.  I knew then. I am also mentioning this to everyone because a negative biopsy does not always mean you dont have cancer.

    On Dec 27 I had a radical hysterectomy (uterus, cervix, ovaries, and fallopian tubes were removed) and lymph node disection (they removed several lymph nodes from different areas). My cancer (adenocarcinoma) was surgically staged at 1A, which means it was contained within the uterus and invasion of the myometrium was less than 50%. The cancer found in the D&C was FIGO grade 2, but the surgical pathology only found FIGO grade 1, however the final diagnosis is based on the highest grade found, so I am officially grade 2.  Based on this, and that the cancer was found in the lower segment of my uterus, I will need brachytherapy radiation, which is scheduled for March... 5 treatments over 2 1/2 weeks.  I am very scared and hope others can share their bracytherapy experiences. I am also having genetic testing to rule out Lynch Syndrome, and will have 5 years of surveillance before I am officially cancer free.

    I am 4 weeks post-op, and I have to say the recovery from the hysterectomy has been extremely difficult. I had the DaVinci Robotic Laprascopic procedure. I had extreme pain for the first two weeks during which I was unable to walk, move, shower, or go to the bathroom independently. I was not prepared for that at all.  The gas has been horrible... I gained 22 lbs the day after the surgery and the gas pressure busted open one of my incisions 2 days after I was home. Now 4 weeks later I have finally lost 17 of those lbs. For the entire 4 weeks I have experienced excruciating pain whenever I urinate, have a bowel, or pass gas, although that seems to finally be backing off these fast few days. They tell me it is from inflamation of the vaginal cuff which is still healing. Again, nobody prepared me for any of these post-surgery symptoms, and it has been frustrating to me. Hopefully it's all uphill from here!

    It's very nice to meet everyone.  Looking forward to sharing.

     

    Jill

     

    Hi Jill! I'm so sorry your

    Hi Jill! I'm so sorry your hysterectomy recovery was so painful. I was really lucky there. I think I could have gone back to work a week after my surgery (a desk job). But then, chemo really kicked my butt. I did not have any radiation even though I was Stage II or III (incomplete staging), Grade 3 UPSC. Knock-on-wood, it hasn't come back so far and it will be five years this September.

    You may want to start a new thread - sometimes it's hard to find these posts for new people. There are a lot of women here who can give you lots of advice on radiation.

    Love,

    Eldri

  • Spydergal
    Spydergal Member Posts: 57 Member
    edited July 2021 #59
    Newbie

    I'm new on here.,

    1. Not diagnosed yet, having a biopsy next week,  Sonogram 13mm /

    2. No treatment yet, hoping I won't have cancer

    3. My current status is waiting for test results while praying I'm cancer free 

    the amount of first hand information and experiences from you ladies is very helpful 

  • yetti
    yetti Member Posts: 82 Member
    #60
    Roll Call

    Name : Yetti    Currently 59 yrs old  12/29/61 

    Date of Dx : June 26 2018  age 57. With endometrial endo carcinoma stage IV B Figo 2 

    treatment : Chemo with Carboplatin and Pacitaxol 

    start of treatment: Aug 2018 - Nov 2018. 6 chemo treatments. Hair loss started 2 weeks after 1st chemo. had it shaved bald 2nd worse day of my life  1st was Dx !  I had mets in lungs, omentum and large tumor in pelvis  12cm ! I had a break from treatment from Nov 25 - Jan 16  had laproscopic robotic hysterectomy, the chemo was effective for all metastasized areas shrunk tumor, so I was finally able to get the hysterectomy I wanted to just have and be done with it all  in 2018

    after hysterectomy I thought I was done ✅. But Gyn onc wanted me to have atleast 3 more chemos! Had a pet scan after hysterectomy which showed NED in all areas. But they still wanted to do 3 more chemos.?? why ?  I had 3 more chemos  carboplatin/ taxol with Avastin! The onc would not communicate as to how much more chemo! my last one was March 29 2019 I also went to cancer treatment centers of America as a 2nd opinion   GA. Facility. Met with their Gyn onc they did their own ct scan and labs cab125  was 7. Ct scan revealed NED. April 18  2019 ! I was prescribed letrozole for  er+ and pr + status! I returned home to fla  and the local  onc office called to ask if I would be back in for chemo on April 26. !  I said Nope. Got a 2nd opinion and I'm NED. ! Fla pumps the chemo for $$$$ even if it's not necessary ! I'm still Ned today April 2021 was 2 yrs NED I go up to CTCA every 3 mths for check ups! Just had a petscan on July the 26 th it was a clear petscan! ?. I just want to thank all the survivors on this site for their stories and advice from their experiences ! Sincerely Yetti 

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    edited July 2021 #61
    Ribbons said:

    checking in

    I haven't been on here for a while so thought I would just do an update. Cancer was stage 1a and grade 3, clear cell. Total hysterectomy in Oct of 2018. 6 rounds of chemo, carbo/taxol. Finished that on Feb 15, 2019. So almost one year from my last chemo!! Followed up with 3 brachytherapy treatments. I hate that dilator, and have been questioning my decision to have brachy but after reading things on here again, I guess it was a good decision. I go for check ups every 3 months, so far I am fine. I only have mild neuropathy in 3 toes, but my fibromyalgia is a little worse than it was before chemo. My hair is about 5" long now and still super curly! People want to know where I got my perm and I say it took a long time and was really expensive, so I wouldn't recommend it!   I live in Western Oregon, and I keep busy with my horses and 2 dogs. I have a super husband and 3 grown kids who are all great. O and I am 67. Wish I knew if there were more people on here from Oregon.

    I know this is old, but I saw you've been online

    Ribbons, I'm from Oregon. Husband and I are in Oregon. We also have a place on the Oregon coast. Glad to "meet" you. 

    I'm still newish to all this, and have had a couple hard days. I just learned today that my new gyn onc is retiring, but I suspected he would be when I met him recently, after leaving another gyn onc and clinic situation. I am okay with changing to a different gyn onc, in other words. I'm receiving treatment at OHSU. 

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