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Let's have a roll call!

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

We have a lot of new people and although the board has been pretty quiet lately, let's have a roll call.

1. Type of uterine cancer - Stage & Grade

2. Treatment

3. Current status

4. Anything else you'd like to share or what you've learned from this journey, etc.

If you've been following the posts but haven't posted yourself, now's the time to introduce yourself to us.

Love,

Eldri

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

Hi, I'm Eldri, 67 and living in Tarpon Spring, Florida.

1. I have UPSC with incomplete staging - either Stage II or III (no lymph nodes taken), Grade 3.

2. I completed three of six chemos with Carboplatin and Taxotere at St. Vincent's Hospital in Green Bay, Wisconsin.

3. NED - 4+ years as of 9-30-2019. I take 2000 mg of Metformin daily.

4. I wish I would have found this board before going through chemo. There is SO much information on here from this wonderful group. I have severe neuropathy and numbness in my feet but my doctor said I have a good pulse in both ankles so that's good, but I wish I had known about icing! I've learned to live with the side effects of the chemo and since retiring and moving to Florida, I have a great lifestyle. I will (knock on wood) be five years NED this year and I'm still trying to figure out why I'm alive and so many wonderful women who had lower stages and grades than me, are gone. 

Love,

Eldri

cheerful
Posts: 266
Joined: Apr 2011

Hi: I'm Jane, age 68 and live outside of Philadelphia, PA in the suburbs

I have UPSC - Stage 1A - Grade 3

I completed 6 rounds of carboplatin and taxol from April of 2011 through August of 2011 and then I had 3 brachytherapy treatments end of September 2011 into October 2011.

I am currently with NO evidence of disease after almost 9 years as I was diagnosed in February of 2011 with UPSC.  I was 59 when I was initially diagnosed with UPSC.

I am very grateful to the wonderful group of women on this board - as they are all so knowledgeable on UPSC and other types of uterine cancer as well.  I have known of several women very sadly to have passed away from UPSC through the years and do miss all of the women that have passed away on this Board.  I am very grateful to still be alive and doing well after almost 9 years of diagnosis.  I still see my oncologist 2x a year as he does schedule ultrasounds of the abdomen and the pelvis once a year and also do have blood work done.  I did have a slight reoccurrence in the fall of 2016 and miraculously UPSC just left me after several months of being followed very closely by my oncologist so no further chemo tratments were needed in 2016 - thankfully and gratefully.

Hugs,

Cheerful a/k/a Jane

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

and living in Washington State.  Age 68

1. I have UPSC or Endometrial Intrepithelial carcinoma.   Stage 1A with no residual malignancy in the hysterectomy speiclmen.  Lymph node mapping with Sentinel nodes taken.  Complete staging negative for malignancy.  

2. No treatment.  I could have opted for treatment, but with no malignancy in hysterectomy specimen I was offered the option of no treatment.

3.  18 months NED

4.  I know it makes some people uncomfortable I chose no treatment.  I did because I could recur even if I had treatment.  Studies of my same results show about a 5% chance of recurrence.  They just don't know.  I am conmfortable with my choice, and cancer research needs people who choose no treatment for retrospective studies.  Yes I do still worry.  But I am on my path.   I asked my gyne oncologist what she would do if she were me, and she said I would probably choose no treatment.  

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

I'm Armywife, living in San Antonio Texas for another month and then off to conquer retirement.

1. Endometrial endometrioid adenocarcinoma Stage IVB, Grade 2. Positive LVSI and positive pelvic wash.

2. Davinci robotic hysterectomy, 1 round taxol/carboplatin, 1 round carboplatin, 4 rounds taxotere/carboplatin. My chemo was changed due to a severe reaction to the taxol. Doctors were split on whether to do radiation, as there was not absolute evidence that it improved survival in advanced stage cancer. We decided to reserve radiation for recurrence.

3. NED 2 years, 3 months and 15 days from completion of treatment. (But who's counting?)  

4. I was diagnosed at age 57 with only one microscopic episode of spotting and then one significant episode.  I'll forever be thankful that I learned here that I am a statistic of one. Trying my best to live gratefully every minute. 

Fridays Child
Posts: 207
Joined: Jul 2019

1. Endometrioid adenocarcinoma, originally Grade 1, Stage 1a.  Six years later, recurrence to pelvis, hip joint, and both lungs, restaged at IVB.

2. DaVinci robotic hysterectomy followed by brachytherapy after original diagnosis.  After recurrence, 5 low dose carboplatin and taxol concurrent with radiation, then 6 full dose carboplatin and taxol. After that, letrozole for about 9 months, then changed to megestrol.

3.  Still not NED.  Latest scan shows stable disease.  Still hopeful.  It has now been eight years since the initial diagnosis and two years since the recurrence was diagnosed.

4.  Interestingly, I had occasion to meet one of the scientists who was involved in the discovery that platinum affected cancer cells, leading to the development of cisplatin.  The first man treated with it (for prostate cancer)  has been disease free since 1974.

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

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

Fridays Child
Posts: 207
Joined: Jul 2019

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.)

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

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

MAbound
Posts: 1114
Joined: Jun 2016

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. 

 

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

Type of Cancer: Uterine Carcinosarcoma (MMMT)

Grade & Stage: Stage IIIB, Grade 3

Date of Diagnosis: November, 2016 at age 61

Surgery: December, 2016 - Laparoscopic radical hysterectomy with bilateral salpingo-oophorectomy. 17 lymph nodes were removed.

Treatment: I had four cycles of Paclitaxel/Carboplatin, followed by four cycles of lfex/Mesna/Adriamycin. The use of different drugs for "phase 2" was planned from the beginning and not the result of any allergic reactions to the first two drugs. I then had 25 external radiation sessions.

Where Treated: Advocate Lutheran General Hospital, located in Park Ridge, Illinois (a suburb next to Chicago, Illinois).

Outcome: NED per latest CT scan in February 2019 and quarterly follow-up exams (most recent January 2020). I have very mild neuropathy in my feet. And sadly, my hair, already thinning, grew back even more sparsely. I developed lymphedema in my legs about 2.5 years after treatment. The left leg is worse than the right and I wear compression stockings.

zsazsa1
Posts: 553
Joined: Oct 2018

Currently 58 yrs old.  UPSC/clear cell, Stage 1a or 3c1, depending upon how you interpret isolated tumor cells in sentinel node.  I only had sentinel nodes taken.  I had a year of clear discharge, but was told it was nothing to worry about unless I had blood - which took about a year to finally appear.  Diagnosed Sept 2018.

Robotic hysterectomy October 2018.  6 rounds carboplatin/taxol, chemo drawn out due to low platelets.  That was probably due to the fact that I have an enlarged spleen of indeterminate origin, which was likely chewing up my platelets.  Pushed for testing for her2/neu status, was positive, added herceptin to treatment.  Finished chemo (but declined last dose taxol due to beginnings of neuropathy - I had iced assiduously during treatment, which I think helped), continued herceptin.  Then did 6 weeks whole pelvic IMRT radiation - was a tough decision whether to do brachy or external pelvic.  Had a very hard time with radiation-induced enteritis, but that has finally largely resolved.

NED CT scans March 2019.  NED MRIs November 2019.  Ca125 slightly increased last time, hopefully was because I'd just had a liver biopsy procedure done to work up enlarged spleen.  About to make a decision with oncologist on taking out the enlarged spleen.  

The support and advice I've received from this board has been invaluable.  It's been very hard to see some of the women who helped me, pass away from uterine cancer recently.  I don't come on as often now, because it makes me sad to know they're gone, but I do check in at times, and am very willing to offer any advice from my experience, that any woman might find useful.

takingcontrol58
Posts: 263
Joined: Jan 2016

Zsazsa1,
Before you decide to remove your spleen, which is a key part of the immune system, which you need working
at full capacity when you have cancer, I would highly recommend you test your blood for ferritin (stored iron).

It is a key fuel for cancer- rising ferritin levels are not a good sign. Iron is stored in both the liver and spleen-
two organs where I had metastases. My ferritin was at an abnormal level at the time -334- normal is below 100.
I have seen many cancer patients with very high ferritin levels not make it. Women in menopause are known
to have high iron levels because we no longer have monthly menses, which removes iron from the body.

The spleen is too valuable an organ to just remove before checking out some basic things. This is what I
mean by getting to the root cause of your cancer.

Takingcontrol58

 

zsazsa1
Posts: 553
Joined: Oct 2018

Believe me, it's ALL been checked.  I've been investigated by heme/onc, including bone marrow biopsy and all possible blood tests.  Infectious disease, hepatology, and rhuematology, all with every possible test done.  I'm an MD myself., and an obsessive researcher.  It's ALL been ruled out.  We don't know why, but we're sure it's not metastatic disease, and no tests currently point to lymphoma.  What I'm concerned about is that about 40% of enlarged spleens of unknown origin eventually go on to become lymphoma.  I'm aware of all the immunizations I would need, and that I'll have to get rid of my wonderful dog (although I'm hoping to just take daily prophylactic antibiotics and keep the dog).  I'm going to see the lymphoma oncologist next week, now that we have all possible consults and tests in, and we will discuss whether or not to do a splenectomy.  One of my concerns is that my chronically low platelets will rule out chemo if I have a recurrence - the splenectomy will take care of that.  I'm having frequent discomfort under my left rib cage at this point.  But I want to wait until after my next Ca-125, internal exam, and set of MRIs, to be sure that they're all normal.  If any of them point to recurrence, I don't know what I'm going to do.  Apparently, they can do the splenectomy laparascopically now, so it should be a very easy recovery, and not leave me suffering with a long recovery, only to recur.

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

Have you had genetic testing?   Maybe you have a form of that disease.  Modifiers could make it less apparent but still cause problems.  I wish you the best of luck getting this solved.  All the decisions are such a difficult part of this disease.   

Theskinnyscot's picture
Theskinnyscot
Posts: 33
Joined: Dec 2019

endometrial carcinoma, stage 1b, grade 3. Diagnosed Sept.2019, complete abdominal hysterectomy with removal of 20 lymph nodes, indeterminate for LVSI. Surgery was on Oct 25 and then started 25 IMRT on Dec20. Only 6more to go. No chemo, thank goodness, I only weigh 100lbs and I am 5'9""so my dr figured I probably could not tolerate it and there was no evidence that it would be beneficial. Btw I am 59 and a half yrs old.(The half is important as I was able to pull money from an old IRA to pay some medical bills without an additional penalty from the IRS)

i am still waiting for a referral to genetic counselor to check for Lynch Syndrome due to the "make up" of the tumor And the fact that I also have hemochromatosis and syndactyly  both genetic disorders. So far so good on the radiation only a little issue with diarrhea and I am keeping it in check with probiotics, Imodium and BRAT diet. Fatigue on the other hand.....on Fridays I can barely make the 3mile drive home without thinking I am going to fall asleep at a traffic light!

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

Theskinnyscot,

You're on the home stretch with your radiation treatments, which is always good news!

I, too, had genetic testing for Lynch Syndrome since the pathology of my tumor indicated microsatellite instability. I now see a gastroenterologist to have an endoscopy and colonoscopy every two years (some people prefer to have them annually, but I'm comfortable with the two year cycle).

My siblings also got tested after it was confirmed I have Lynch. Fortunately, my sister with children doesn't have it, so her children don't have to worry about it. My brother does have Lynch but, like me, doesn't have children.

christine8822
Posts: 41
Joined: Mar 2016

Hi, I'm Christine, age 64. HI Eldri!

1. Type of uterine cancer - Stage & Grade: In May 2015 I was diagnosed with Stage IIIC endometrioid adenocarcinoma Grade 2, found in 3 of 17 pelvic lymph nodes

2. Treatment: July to December 2015, Sandwich treatment: 3 chemos (carboplatin/paclitaxel) 3 weeks apart, then 5 weeks of pelvic radiation, then 3 more chemos

3. Current status: no evidence of disease since treatment ended Dec. 31, 2015

4. Anything else you'd like to share or what you've learned from this journey, etc.: Keep going and let the love of those around you hold you up. I am grateful to be here.  I feel like every day is a bonus. I don't post much on this board anymore, but my thoughts, love and prayers go out to everyone here. It took me about 2 years after treatment to start feeling like my old self (including my hair) so be patient and kind to yourself. I do feel lucky to live in a big city with a fine oncologist who gave me cutting edge treatment that more recent studies have confirmed is best for patients with my type of cancer and stage. But after following this board for more than 4 years, I realize a lot of outcomes are luck of the draw. Much luck to all.  

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

Congrats on your NED status – may it long continue!

Molly110
Posts: 190
Joined: Oct 2019

Hello,

 

I'm Molly. I don't read or post often, but when I do, I've found this to be a great source of information

 

1. Type of uterine cancer - Stage & Grade: Papillary serous, stage 1B. I don't know the grade. 1B instead of 1A because in one spot where the uterine wall is thinner I had slightly over 50 percent penetration, if that's the correct term. I don't know whether that makes much difference, as I've learned from these discussions that plenty of stage 1 women die and plenty of more advanced stage women do not, as this particular cancer seems nasty and unpredictable.

 

2. Treatment: Davinci total hysterectomy, followed by 6 cycles of carbo/taxol, which I finished 8 days ago. Concurrent with the chemo I had four VBT sessions, which were easy -- thanks to the wonderful radiology team -- and it looks like I will have no side effects from that. I have pretty severe neuropathy from the chemo, especially in my feet, so there was a question on cycles 3-6 whether I would be able to stay on taxol or have to switch to taxotere, which I really did not want to do. Fortunately, my oncology nurse practitioner suggested I try acupuncture, and twice weekly sessions kept the neuropathy at a manageable level so that I could stay on the drugs I started on. (I used the elasto-gel mitts and gel slippers on cycles 2-6; perhaps the neuropathy would have been worse without them.) My brilliant gyno/onco thinks that the neuropathy will be permanent, although at a much less painful level. My acupuncturist is more hopeful. I'm going to continue with acupuntcure as long as I can afford it and hope that the pain will become minor and more or less ignorable. I tried Cymbalta, which works for some women, but not for me. Plus, it woke me up every hour on the hour at night. I also am on alpha lipoic acid and B-12, both with the concurrence of my medical team, by which I mean they said there wasn't evidence of effectiveness but it was okay to try and would not be harmful. I was lucky enough to get big city care in the Chicago suburbs and whatever the outcome for me, I will be forever grateful for the quality of care and compassion I received. 

 

3. Current status: Still feeling a little beaten up by the last chemo, as my red blood cells are low. I also have quite a bit of ringing in my ears from the carboplatin. Now that the chemo is over, I'm looking forward to a chance to heal without another chemo punch looming. My hospital offers lots of rebuilding stuff like yoga and exercise programs, which I plan to take part in, as the hispital is 10 minutes away from my office. I was able to work throughout chemo and radiation and am grateful for that. On the rougher post-chemo days, my wonderful boss allowed me to work from home, which made all the difference.

 

4. Anything else you'd like to share or what you've learned from this journey, etc.:  I am not a brave person, not a warrior or an inspiration or any of the stereotypes. I was so terrified of the ordeal and damage of chemo that I almost didn't do it. I also thought that with this horrible form of endometrial cancer, I would likely die while I was still bald and worn out from the treatment. It's hard to make decisions when your entire life had just been turned upside down. In late August when I was diagnosed, mid January -- the date of my final chemo -- seemed like a lifetime away. What I would like to share is that, for me, it went by pretty fast. It was not fun, but it was nowhere near as bad as I'd feared, and almost before I knew it, it was over. A lot of people offered me a lot of help along the way,  some expected and some unexpected. I let people help me, and I'm really glad that I did.

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

We can all relate to your relief with being done with treatment. I hope you'll be able to celebrate this milestone with something fun.

Oddly I didn't have neuropathy while taking Paclitaxel/Carboplatin, but it developed right at the end of treatment with Ifosfamide/Doxorubicin – not a typical side effect for those drugs.

My oncology nurse (who had also had cancer) said that it can take up to a year for neuropathy to subside. That wasn't the case for me since I still have it, but it hasn't gotten any worse and it's pretty mild compared to what others have suffered. I hope that you'll be one of the ones lucky enough to have it lessen over time, even if it doesn't completely go away.

I also took advantage of the yoga and exercise programs offered by my hospital while on Paclitaxel/Carboplatin (but not during the tougher Ifosfamide/Doxorubicin phase). While I'm definitely not an exercise junkie, I do believe that staying somewhat active helped me to recover more easily from all my treatments.

I hope that you'll be feeling more like yourself soon, but be patient with your body because it does take time.

Molly110
Posts: 190
Joined: Oct 2019

Thank you, CMB. I'm awake now because the neuropathy in my feet is pretty painful, or it could be the Cy,balta, which I've only started to wean off of. Did you try it? I know that the American Society of Clincial Oncology has been recommending it for treatment of chemo-induced peripheral neuropathy since 2014, but I didn't notice any results, and I hated the side effect of waking up every hour or so all night. My pharmacist said it's more common for the drug to make people sleepy, but one thing that's surprised me throughout has been the number of unusual side effects I've had -- unusual as in the side effects are well known but not as many people get them. It sounds like you've been getting great care at Advocate. I've been at Lake Forest and have been stunned by and grateful for the quality of care I've received. 

 

I think my neuropathy will lessen over time and will cope fine if it doesn't go away. I'm just glad that it's over and I'm still standing. It sounds like you know the feeling.

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

Molly,

My doctor offered to write me a prescription for Gabapentin, but my neuropathy isn't actually painful so I didn't try it. I have just a weird numbness/tingling feeling in my toes and the balls of my feet. It doesn't really impact me on a daily basis. But I can't perch on my toes to do planks in exercise class anymore, which is a shame since I used to like to do them! 

And yes, we're lucky to have had good care and ongoing support at hospitals so close to where we work and live. 

Molly110
Posts: 190
Joined: Oct 2019

CMB, 

Was it always not painful, or did it become not painful over time? It sounds like it was the former?

At first mine was exactly what yours is -- "weird" and "creepy" were my words for it, rather than painful. After my fourth cycle, my hands and feet (mostly my feet) started to burn, and now (two weeks after my final cycle) the "pain" alternates between burning and freezing. (I told my wonderful gyn/onc that I'd thought since it was "just" nerve pain, I could reframe it in my head as something other than pain, maybe just discomfort. I soon learned better, and he told me that it's usually harder to reframe nerve pain than "regular" -- not his word -- pain.) My hope is that continuing with twice weekly acupuncture will get rid of as much of it as possible. I hadn't thought yet about not being able to stand on my toes, as I'm still working on standing up in the bathtub. I had no idea before the neuropathy how much that depends on ones toes. : ) 

Molly

oldbeauty
Posts: 303
Joined: May 2012

Hello Molly, my neuropathy is permanent 2+ years after chemo (12 rounds of carboplatin and/or taxol/taxotere).  By the end of chemo I could barely walk around the house it was so painful.  My endocrinologist prescribed Lyrica, which she was more readily bio-available than Neurontin, and I take 75 mg 3x per day.  Lyrica has now gone off patent so there's not the fight anymore to get insurance to approve it, and it's cheaper this year. In addition, I was referred to a wonderful Ph.D. in physical therapy who specialized in traumatic brain injury, and she really helped me build core strength and train my brain to again do balance-intensive tasks.  In addition, I started one-on-one Ayengar-style yoga.  Whether one thing, two things, three things or No things helped beyond time away from chemo I don't know.  I was so debilitated by my chemo odyssey that it took a solid year of Ketogenic diet and these self-help routines to get back to where I am today.  

I used not to be able to bend over without tipping over, or kneel on the floor w/o my head feeling like it would explode, or walk w/o looking like Frankenstein's monster. Last summer, I was able to (with help from hubby) to landscape our front yard, walk at least 3 miles at a time, and I've never fallen.  I'm a little clumsy at yoga sometimes (mostly getting upright again from poses) but my stamina and strength and balance has vastly improved.  Below my ankles my feet are pretty numb (though I can feel temperature changes) and I do have a constant tingle.  I feel like I can't move my toes but I look down and I can move them.  I've never been kept awake at night with pain as some here have reported.  I don't feel any untoward effects from the Lyrica so I follow my doctor's advice to keep on taking it (I've played with the idea of weaning myself off but the doctor says I am on such a "baby" dose so I continue).  But, like I say, my improvement to my current level of mild disability may just be due to time away from chemo.  Good luck with your quest for relief.  Best wishes, Oldbeauty

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

Molly,

My neuropathy has never been painful - just the same numbness/tingling sensation. I think because mine developed at the very end of my chemo treatments it never progressed to a more severe state. While it's never gotten better, it also has never gotten worse. 

I hope you feel some improvement soon.

zsazsa1
Posts: 553
Joined: Oct 2018

Congratulations on being done with chemo.  I bet you will be feeling much, much better in another couple of weeks.  And hopefully it will all be smooth sailing from then on.

Molly110
Posts: 190
Joined: Oct 2019

Thank you, Zsazsa. It must be tough to he a physician and have this kind of cancer. When my gyno/onco called to tell me after a D&C that I did have cancer, which my original gyno thought wasn't likely for a number of good reasons, he said that I had a "less common" form of endometrial cancer than wasn't often curable but was always treatable. He was kind and upbeat, but when I hung up the phone and looked up the disease, the first thing that came up was a journal article in which the first words I saw were "rare and malignant." So, despite a lifetime of analyzing public health research, I closed my computer and walked away from researching this disease. As a physician, you likely didn't get to run away from knowing more than you may have wanted to initially. I've always wanted to know everything, but not this time. I told my brilliant, compassionate gyno/onco that I didn't want to know my survival odds and was going to rely on him to kow what I should do. Of course, I did have to make decisions throughout my treatment, but by the time the decisions got complicated, I'd had some time to deal with the diagnosis. I hope your spleen situation resolves itself in the best possible way and especiall that you do not have to give up your dog.

Molly

Molly110
Posts: 190
Joined: Oct 2019

Thank you, Zsazsa. It must be tough to he a physician and have this kind of cancer. When my gyno/onco called to tell me after a D&C that I did have cancer, which my original gyno thought wasn't likely for a number of good reasons, he said that I had a "less common" form of endometrial cancer than wasn't often curable but was always treatable. He was kind and upbeat, but when I hung up the phone and looked up the disease, the first thing that came up was a journal article in which the first words I saw were "rare and malignant." So, despite a lifetime of analyzing public health research, I closed my computer and walked away from researching this disease. As a physician, you likely didn't get to run away from knowing more than you may have wanted to initially. I've always wanted to know everything, but not this time. I told my brilliant, compassionate gyno/onco that I didn't want to know my survival odds and was going to rely on him to kow what I should do. Of course, I did have to make decisions throughout my treatment, but by the time the decisions got complicated, I'd had some time to deal with the diagnosis. I hope your spleen situation resolves itself in the best possible way and especiall that you do not have to give up your dog.

Molly

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

1. Type of uterine cancer.  Stage & Grade: DX 4/5/2012 @ 49 years old.  UPSC, Stage 1A, Grade 3

2. Treatment: 3 Chemo (Carbo/Taxol), 25 External radiation, 3 brachy radiation, 3 Chemo (Carbo/Taxol)

3. Current status:  NED and annual check in with onc

4. Anything else you'd like to share or what you've learned from this journey, etc:  All cancer sucks. I am so grateful for all the wonderful women I have met, but weep inside when I think of all those we have lost.  Don't be afraid to talk openly about our gyn cancers.  Wear your peach and teal proudly.  

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

1. Type of uterine cancer, stage and grade: endometrioid adenocarcinoma, stage 1a, grade 3. 9 lymph nodes removed, negative. Tumor size <1cm. 

2. Treatment: 3 brachytherapy sessions

3. Current status: Being checked every 3-6 months now for lung nodules that were there in pre-operative CT scans and are stable at 3mm and 4mm. Also, a stable liver "something" (maybe a cyst) at 3mm. 

4. I was lucky to find this forum right after my D&C. Everyone was so helpful and calmed me down. I don't have a lot to offer in terms of advice, but my prayers and thoughts go out to everyone fighting this disease here.

mcarp0117
Posts: 19
Joined: Jul 2019

1. Type of uterine cancer - Stage & Grade: Papillary Endometroid Cancer Grade 2, Stage 1B (72% myometrial invasion); 13 removed lymph nodes negative

2. Treatment: 5 Brachytherapy sessions between Sept 30, 2019-Oct 14, 2019

3. Current status: NED at 3 month follow-up in December; unexplained neuropathy type symptoms in hands/feet/hips-seeing PCP and Orthapedic as no one can explain, but onset was post surgeries and gotten worse since brachytherapy.

4. Anything else you'd like to share or what you've learned from this journey, etc.: Happy to have needed miminal treatment to be cancer free, learning to live with daily symptoms of pain that I didn't have before, thankful for groups like this to share common feelings and learn from each other's experiences.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1769
Joined: Jun 2015

1. Type of uterine cancer - UPSC   Stage 1A  & Grade 3 

 

2. Treatment - I had the standard carbo/taxol. I started out having weekly treatments but switched to the  every 3 week protocol after the first 6 weeks. Even though the weekly had slightly less pain, I had way less good days. It was worth the higher every 3 week dose to get extra good days in between. I also had 5 brachy therapy sessions.

 

3. Current status - Just had my 4 year post treatment check up last week. Still NED!

 

4. Anything else you'd like to share or what you've learned from this journey, etc. - I have always been a glass half full kinda girl. I think having a positive attitude was incredibly important during treatment and post treatment recovery. It takes a long time to get back to a normal level of feeling "normal".  I continue to wake up happy every day and know that being healthy is a gift. I'm grateful for this group of women and truly miss those we have lost along the way. We all a so very lucky to have each other. 

Love and Hugs,

Cindi

 

 

Molly110
Posts: 190
Joined: Oct 2019

Wow, four years sounds great! Congratulations, Cindi.

Tamlen's picture
Tamlen
Posts: 305
Joined: Jan 2018

Hi there, Tamlen here.

1. Type: Endometrioid adenocarcinoma, Grade 1, Stage IVB with mets (now cystic) only in the lungs, dx age 55. No family history. All pelvic lymph nodes were clear, but LVSI suspected at time of hysterectomy.

2. Treatment: February 2018: Total abdominal hysterectomy and lymphadenectomy via laproscopy. April 2018: Lung biopsy following CT scan I demanded, positive for multiple uterine tumors in both lungs. May-September 2018: 6 cycles of chemo with carboplatin and paclitaxel. June 2018: 5 rounds of brachytherapy. October 2018-present: Aromatase inhibitor (extemestane).

3. Current status: NED as of November 2019. Lung mets cystic (dead). Do not anticipate this will last but happy to have some extra time. Health generally good except for cancer!

4. Other comments: I found it freeing to make my peace with my sooner-than-anticipated demise, then let it go and just enjoy my life. Significant joint pain (almost debilitating some days, walk around like a 90-year-old on those days) from the aromatase inhibitor, but will keep taking it as long as it's working because pain beats the alternative. No neuropathy, thankfully; iced hands and feet religiously during chemo. Approved for medical marijuana but haven't found it much help for the pain.

Molly110
Posts: 190
Joined: Oct 2019

Tamlen, I've been working on coming to terms with the fact that my life could end decades early than I expected based on the lomgevity of women in my family. Do you mind if I ask you how long it took you to come to the peaceful place you describe? 

 

I wish you -- and all of us -- the best of luck. 

Tamlen's picture
Tamlen
Posts: 305
Joined: Jan 2018

I was really angry for the first six months, exacerbated by my original onc mis-diagnosing me as Stage II (I was actually Stage IVB) and the many months' delay in treatment it caused. I didn't think I was very angry, but looking back now, I can see I was. I wasn't angry that I had cancer and a shortened life; I was angry at how much of my life and the things I loved doing that this awful diseases was stripping me of -- and therefore, I thought, stripping me of part of my identity. My sweet husband never mentioned my months of anger until after the fact ;) Decadron during chemo probably didn't help!

When chemo ended, which was about 10 months after original diagnosis, and it initially looked like it hadn't had any impact, I realized that I needed to adjust to my new horizon ASAP or, as the author of the article said, it would make the remaining time miserable. That's when the real work of making my peace kicked in.

I'm blessed to have been raised by loving parents who taught us that life doesn't really owe us anything. Friends kept saying to me, "Oh, it's so unfair! You've been so active and led such a clean-living life, and now you get cancer anyway!" I realized that when people spoke to me like this, it made me angrier, because it implied that by living a good life I somehow deserved for cancer not to try to kill me. But, of course, it doesn't work that way. I started pushing back -- really hard, sometimes, though always with love -- on that kind of thinking. And in doing so I found my freedom from it.

We should start a list of all the things we wish people wouldn't say to us, so we can print it out and hand it to our loved ones :)

 

Molly110
Posts: 190
Joined: Oct 2019

Thanks for the response, Tamlen. I was fortunate enough not to have any problems with my diagnosis or care, and I ignored spotting for years, so the only person I've had any reason to be angry with is myself, and I guess I've been too frightened for most of the past 6 months to beat myself up much. I know what you mean about the awkward or -- if I'm feeling mean about it, stupid -- things people say to people in cancer treatment. My least favorite is hearing what an "inspiration" I am. I'm a late middle aged, white woman with good health insurance and easy access to stellar cancer care minutes from my work and home. I got diagnosed and I went through a relatively easy treatment with lots of support from colleagues, family, and friends, and I only decided on chemo and radiation because my doctor told me I was curable. In other words, I did the minimum with the maximum support, and I've only done it once. That is not "inspiring." Lots of the women who post here, though, *are* inspiring. No matter how often this *&&^# disease knocks them down, they keep getting up. They don't give up, and they reach out to support other women. My second least favorite thing is people telling me about someone they know who died of cancer after enduring horrible, painful treatment, adding after they tell the story "of course, that's not what will happen with you."  I know, though, that most people want to express sympathy or support but don't know how. What feels most comfortable to me is when people say something along the lines of "well, that sucks," and, of course, I appreciate being told that someone is praying for me, even though I'm an agnostic (although a Catholic one : )  .

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

"You Look Great!". Looks can be deceiving. I always, even in my worst moments made the extra effort to try to look good. Not really for others but for myself. 

"Don't worry, you'll be fine.". That's not necessarily true. 

"You're so strong". I have no choice. 

"You'll beat this"  Not necssarily  You can't will this away  

 

 

 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

Where is that darn LIKE button!!! Wink

BluebirdOne's picture
BluebirdOne
Posts: 393
Joined: Jul 2018

BluebirdOne: Hi all. We retired to live part time in our summer home in Michigan and Leawood, KS.

1. I was diagnosed in July 2018 at age 67 with UPSC. Staged at 1a. LVSI

2. Hysterectomy, BSO. I had my surgery and treatment at my 2nd opinion, Mayo in Rochester, with 4 rounds of chemo, 3 brachy. Look at my profile for the full story. 

3. Currently NED, next appt. 2/3. 

4. Don't blame yourself for your cancer. Advocate for yourself as some doctors do not take your symptons seriously. Your family goes through this with you, we all have suffered, but have pulled together. Educate yourself about your condition and treatment as fear of the unknown is mitigated with knowledge. Don't hesitate to get help with the after effects, as these could be lifelong. 

Denise

smargaret
Posts: 15
Joined: Nov 2019

Hi, I'm Sue and here is my info:

1.  Type and stage of uterine cancer:  I was diagnosed last October with high-grade serous carcinoma.  Surgery was Nov. 22 ( total abdominal hysterectomy and bilateral salpingo-oophorectomy ) and the path report showed stage 1-A.  I'm 77 years old.

2.  There was no further treatment recommended, since the tumor was less than 1 cm. and was in a polyp rather than in the uterine wall and there was no evidence of cancer anywhere else.

3.  I go back every three months to Kaiser for check-ups for the next two years.  I am told that the chance of recurrence is small, given the size and type of tumor.  I am fortunate in that a friend who is a retired ob/gyn has gone with me to every visit to make sure I understand what the docs are saying and to ask questions I don't know enough to ask.

4.  This site had been invaluable for me in terms of advice.  Thanks to all of you!

cmb's picture
cmb
Posts: 672
Joined: Jan 2018

Sue,

It's good to hear that your cancer was caught early and contained within a polyp. That's just about the best news anyone can receive with this cancer. You're also fortunate to have a ob/gyn friend who has been with you throughout this process. I'm sure that helped a great deal, along with the input from this board. 

Even though the chance of recurrence is small, having regular exams is still the soundest strategy. Your doctor is wise to recommend this.

jan9wils's picture
jan9wils
Posts: 155
Joined: Mar 2017

Hi! I am Jan

Type and stage: endometriod adenocarcinoma stage 1B grade 2 dx June 2014

Treatment: hysterectomy, radiation, chemotherapy, surgical resections, immunotherapy, hormone (blocker) therapy

Currently: recovering from abdominal surgery to remove tumors

Other: because my cancer is "garden variety" the multiple recurrences were surprising for me. I'm no longer in denial about the seriousness of this disease.

mamlicsw's picture
mamlicsw
Posts: 35
Joined: May 2019

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

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's picture
JillAndrea
Posts: 30
Joined: Jan 2020

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

 

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

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

Sunrise19
Posts: 23
Joined: Apr 2019

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
Posts: 1114
Joined: Jun 2016

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
Posts: 23
Joined: Apr 2019

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!

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