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Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

Hi everyone.  I've been reading these boards faithfully since my diagnosis in April of 2017, and have learned so much from all of you.  I waited to join because I didn't think I had anything to offer, but I don't want to let any more time go by without saying a heartfelt "thank you" to everyone here.  (I wish I had been in time to say it to Editgrl.)  I believe my journey has been made a lot easier because of things I've been made aware of on this board.  

My endometrioid endometrial adenocarcinoma was discovered incidentally by an ultrasound checking on my kidneys  (I have parathyroid issues which cause high urine calcium.)  Biopsy was immediate and followed two weeks later by a DaVinci hysterectomy.  Path revealed Stage IIIA Grade 1 here at our military hospital, and I went to MD Anderson for a second opinion, which came back Stage IVB Grade 2.  Both labs agreed that it was a very unusual presentation.  I had 6 rounds of chemo.  Ended up in the hospital after the first paclitaxol/carboplatin - aFib and RVR with severe neuropathy of arms and legs.  Second chemo was Carboplatin only, and 3 through 6 were taxotere and carboplatin.  My surgeon wanted to do both kinds of radiation.  MD Anderson's tumor board was split down the middle on whether it would be of any benefit, and ended up deciding to wait for recurrence before doing radiation.  I finished chemo on October 2 and had a scan for the radiation oncologist on October 11.  Physical exam was December 8, and next one will be March 5.  My gyn-oncologist here plans to do pelvic exams every 12 weeks but no scans unless I have symptoms.  MD Anderson is doing genetic testing, and preliminarily it looks like I have Lynch syndrome, but they will let me know when all the results are back.  The doctor there also doesn't scan unless there are symptoms.  

I'm not sure how comfortable I am with just not having any scans.  Would y'all mind sharing what the protocol has been for you?  I had no symptoms at all before diagnosis other than one episode of spotting.  My pathology says my cancer was caused by endometriosis, and I never had any symptoms of that besides painful intimacy.  It was never diagnosed, and I understand it's a rare occurrence to have cancer develop from endometriosis, though my surgeon said it would always happen eventually.  So I'm not sure what symptoms to look for.  My surgeon said any change in bowel or bladder, or any pain.  I have a bit of IBS so would never know what a bowel change was because it's never the same.  I'm having twinges and pains here and there in my abdomen but I don't want to live fearing every little ache.

I sure do appreciate you ladies, and look forward to hearing what you think.

CheeseQueen57's picture
CheeseQueen57
Posts: 821
Joined: Feb 2016

Welcome officially but sorry you had to find us. I was dx Stage 3c, Grade 3 adenocarcinoma after hysterectom. I had bleeding.  14 weeks of taxol/carbo then had stroke. 28 days of external radiation and 3 internal. Kinda wish I had postponed radiation cause I have had many side effects. 8 months after frontline therapy reoccurrence to peritoneal area which would not have been found without scan. Megace seems to be working. I’m being treated at Fox Chase and my doc does CT scans every 3 months. I’d be uncomfortable with the “symptom” protocol but I think that’s what the guidelines say. 

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

Thank you for the welcome, and I've been following your journey for almost a year now.  Who did you see at MD Anderson?  I'm so sorry you've had radiation side effects.  That was a big reason I agreed to wait for radiation.  No visible target to shoot at so it may have caused a lot of collateral damage.  Part of my metastasis was to the peritoneal area - two fragments in a cul-de-sac.  Some in one of the fallopian tubes, some on the outside of the uterus, and some chronic acute inflammation on the small distal bowel which turned out not to be cancerous.  It's amazing the difference in pathology reports.  Our hospital here didn't find anything in the tubes or outside of uterus, but MD Anderson did.  Lymph-vascular invasion and positive pelvic wash.  I learned quickly what a grim prognosis that is according to the internet - but my surgeon is optimistic for now.

CheeseQueen57's picture
CheeseQueen57
Posts: 821
Joined: Feb 2016

I saw Dr Shannon Weston at MD Anderson. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2616
Joined: Mar 2013

Armywife, thank you for letting us meet you.  A place to meet others who have their lives turned upside down with a diagnosis of cancer has saved us all from Dr. Google and ask what is really going to happen to those who have walked the road.

Diagnosed with UPSC (Stage 1A, Grade 3) I had the 'sandwich':  chemo/radiation (both external and brachy)/chemo.  (A total of six chemo)

My follow-up after finishing treatment was dr visits every 3 months for the first 3 years.  These involved pelvic exams and pap tests.  The next two years it switched to every 6 months with the same dr/pap.  I do not had follow up CTs.  I am very fortunate not to have some of the side effects other ladies have had.

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

Thank you!  I feel as if I know all of you already from following your stories for almost a year - this is such good learning.

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

Hi! I was diagnosed with Stage 1A, Grade 3 (USPC) cancer in October, 2014. After chemo with carbo/taxol (no radiation), I have been seeing my gyn oncologist every three months for two years and now every six months for "surveillance" until five years.

Like many, my oncologist does not do routine scans, BUT I did get a CT scan with contrast after the chemo treatment to get a baseline, as he put it. And then I actually have had another CT scan since then when I ended up in the "ER" with abdominal pain for two days. The scan was clear, so I don't know what that pain was about (it went away on its own) but anyway, my point is that while they don't like to do routine scans due to the exposure, they will certainly do them if there is anything they wonder about. I have also had two liver MRIs for large cysts since my surgery.

As for symptoms, I have been told to watch out for any unusual aches or pains (bone or otherwise), shortness of breath, discharge or swelling of lymph nodes. I have lymphedema from lymph node removal during surgery but that's just the way things are. Best wishes for your complete recovery!

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

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!

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

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's picture
Armywife
Posts: 327
Joined: Feb 2018

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!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2616
Joined: Mar 2013

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's picture
Soup52
Posts: 902
Joined: Jan 2016

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:)

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

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
Posts: 110
Joined: Jan 2018

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.

Jairoldi's picture
Jairoldi
Posts: 217
Joined: May 2017

I was also diagnosed in April 2017. Stage IIIB grade 3 UPSC. I completed chemo and external radiation November 30 and my first follow up is in a few weeks. I did not have internal radiation. My understanding is I will have a CT scan to serve as a new baseline and unless something comes up there won't be more scans. I will be seen every three months for the first two years.

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

We really are on the same timeline, except for the radiation!  You look wonderful in your photo.  My hair is about the same length as yours now.  How are you feeling?

Jairoldi's picture
Jairoldi
Posts: 217
Joined: May 2017

Yes, we do have similar timelines. My surgery was May 1, 2017. I am feeling better everyday! I am back at work 4 days a week and will be full time mid March. I am still feeling the fatigue from radiation and occasional intestinal troubles but not too bad. I am trying right now to proceed with life as though I never had cancer. I'm more successful some days than other days. I am mentally stronger for sure. The first few months were tough emotionally. I am glad that cancer no longer dominates my every thought. 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I'd be uncomfortable with that length of time between scans for any Stage IV diagnosis, especially when you haven't had radiation. Unfortunately it's not uncommon for path reports to vary widely but the standard of care for anything above Grade 1 is generally both chemo and radiation, then close monitoring for at least the first year.  If you're being treated after complete surgical resection - as many of us were - then what you're really getting is "preventative" treatment, but you don't know if it worked because there's nothing left to test it against. My diagnosis was Stage III Grade 3. I had a "successful" surgery, but microscopic cells in my retroperitonel lymph nodes had grown to a 3 cm tumor by the end of chemo. They were found on a post-chemo scan, absent which everyone would have assumed I was fine when, in fact, I had mets and was already in Stage IV. My radiation field was subsequently extended to both abdomen and pelvis, and I've (fortunately) had no lasting side effects. When the end-of-radiation scan showed I still had residual mets, I then had CyberKnife targeted radiation. I don't want to frighten you but without those scans, god knows where I'd be since I had/have  no symptoms. In my case, I had no idea I even had retroperitoneal lymph nodes, much less where they were located, and they sure as the heck wouldn't have shown up with a pelvic exam. Good luck and let us know what your genetic testing comes back with. Much to my surprise, mine came back as Lynch positive so now I get colonoscopies every year, yippee.

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

derMaus, I've learned so much reading your posts all these months, and am so grateful.  I did have a CT scan ordered by the radiation oncologist nine days after I finished chemo.  My surgeon said she'd use it as a baseline, and that pelvic scans are notoriously unreliable because you have so much stuff in the way down there.  I believe she will order a scan if I ask her to, and if my twinges and aches continue, I will ask when I see her for the physical exam in 2 weeks.  I'm glad I still have radiation as an option if something is found.  I'm so sorry you've had to take this journey, but happy to know that you don't have lasting effects from the radiation - that gives me great hope in case I need it!  And it's comforting to have a fellow Lynch-sister.  May I ask how long it's been since you were diagnosed?  Also, I'm interested in what you mean by "there's nothing left to test it against."  I'm still learning the terminology, so I'm unsure what a complete surgical resection is, but I had a daVinci surgery which took uterus, tubes, ovaries, cervix and two sentinel nodes.  The radiation oncology tumor board at MD Anderson said the same words as you - "preventative dose", which they ultimately decided would probably not be strong enough to do any good, and there was nothing visible to target with a "treatment dose."  (Please forgive me if I'm being too wordy!)

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

under these circumstances. The women on this Board are wonderfully knowledgeable,  compassionate and supportive. I can’t imagine what my life would’ve been like without the support I found here. I was diagnosed with stage 3a, grade 3 adenocarcinoma of the uterus, UPSC.  I had a positive wash. I had 6 rounds of Carboplatin/Paclitaxel and no radiation.  My gyn oncologist told me that there are 3 things he assesses with each check up: How the patient feels physically; what does an internal exam reveal and; what is the results of the CA-125 assay test. He said that a Cat Scan will pick up on a tumor about 2 weeks before the patient has symptoms from the tumor and that Cat Scans do not extend life. Since my diagnosis 4 years and 4 months ago, I’ve had a Pet scan and 2 Cat scans. I won’t have another Cat scan unless I have symptoms, such as abdominal bloating, unusual pain and/or fatigue, unexplained coughing or shortness of breath. I continue to be NED.

Warm wishes for continued good health!

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

It's nice to finally "meet" you!  Thank you for giving me a great summary of symptoms to look for and the information on the scans.  I love that you are over four years out and still doing great, with a similar treatment to what I had.  How do you feel about PET scans versus Cat scans?  Our radiation guy here told me that sometimes PET scans reveal so many things that he ends up chasing rabbit trails.  He said he would order one if it's what I wanted, but that he prefers Cat scans.  It's hard to know what to ask for!   Also, did your CA-125 vary much?  I didn't have the test until after surgery, and it was 14.  Then during chemo, it was 15.  My doctor said she didn't think it was reliable for endometrial cancer, and the MD Anderson doctor said I was probably a person for whom it wouldn't be a reliable indicator.  I need to research this further.  Thank you for the welcome!

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Welcome armywife! I had a Dr scan shortly after chemo front line was finished. It was all clear then. The next year I requested anther , but there had been more than a 3 month gap from dr. Visits due actually to fact that center kept changing my appointments. Later when I had appointment at usual time I was granted a ct which was also clear. Now I’m on the every 6 month schedule which makes me nervous. I do worry about lynch syndrome though I wasn’t tested for it. I decided not to do genetic testing as I was afraid insurance wouldn’t cover it and between my husband and me we had already spent thousands on cancer treatment. Now we are both on Medicare and our bills aren’t as bad, so maybe someday. My ca125 has always been in the teens, so it is hard to know what is happening.

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

Thank you for the welcome and the info!  I am fortunate to have gotten the testing while we still have good insurance.  Retirement is looming next year and I want to have everything done before then!

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I'm Stage II, Grade 3 UPSC and only had one scan related to the cancer.  That was right after my diagnosis.  I have had a couple of chest x-rays too and those were clear.  My oncologist/gynecologist said I won't have anymore scans unless there are symptoms.  His PA told me that when he was new in his practice, he ordered them frequently but time has proven they don't significantly increase the times cancer is found and the radiation can be harmful.  My doctor also did not recommend radiation and his PA told me that with my stage and successful surgical removal of everything, they would save radiation for a recurrence.  Again, he felt more damage than good would come from it.

I feel like you - they should be doing them more but also understand the radiation concern.  I finished my chemo (only had three) in December of 2015 and (knock on wood) have shown No Evidence of Disease (NED) since.

I still feel the effects of the chemo everyday.  I deal with neuropathy which affected my fingers, feet, digestive system, bladder and the back of my tongue which makes it difficult to swallow sometimes. My brain is still a little scrambled too making it difficult to read and retain info along with flipping numbers around. 

Luckily, we sold our business of almost 30 years last August and have retired, spending our winters in Florida and our summers at our lake cabin in Wisconson.  All-in-all, I am thankful to be alive!  I have a wonderful husband and family, lots of friends and boards like this with wonderful women to encourage and support me.

Welcome to the board, armywife!

Love,

Eldri

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

Eldri, it's amazing all the different approaches the doctors take, but I'm thankful to hear that your doctor said similar things about radiation and recurrence.  I'm so sorry to hear that you are continuing to have neuropathy!  Mine was really severe onset three days after the first chemo, and then I had a heart episode and my doctor pulled the taxol.  She said that sometimes the acute onset neuropathy resolves, and miraculously, mine did.  I'm amazed.  I still have plenty of scrambled brain, too - makes doing the checkbook a whole new experience!  Thank you for the warm welcome and encouragement!  Glad you are enjoying retirement!

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

I was diagnosed with ednometrial adenocarcinoma Stage 3C1 Dec. 2016. Had a complete hysterctomy, 6 rounds of taxol/carbo, 3 brachy theraphy, finished everything at the end of June 2017. Cat scan clear at that time. I tested postivive for Lynch Syndrome, so had an endoscopy and colonoscopy (came out fine). I now go every 3 months for blood work and a physical exam. I just had that January 17, all was fine. I asked about PET or CT scans and they said as long as my blood work is ok, my exams are ok, and I have no pain or bleeding, they do not do them because of the added radiation. They said they understand people like the security of them, but as long as there is nothing going on, they don't do them. It sounds like that is pretty normal from what I read.

I will go every 3 months for 2 years, and then every 6 months, and then once a year. I get to have colonoscopies every year due to the Lynch syndrome, and endoscopies every 2 years as well. Thank you ancestors!

(btw, my only symptom was bleeding. I had no pain or anything else.)

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

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.  

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

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. 

Tamlen's picture
Tamlen
Posts: 207
Joined: Jan 2018

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2616
Joined: Mar 2013

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

Northwoodsgirl
Posts: 559
Joined: Oct 2009

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's picture
Armywife
Posts: 327
Joined: Feb 2018

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!

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

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's picture
Abbycat2
Posts: 644
Joined: Feb 2014

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
Posts: 132
Joined: Nov 2015

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

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

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

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.  

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