Long Time Listener, First Time Caller

Armywife

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

Scans

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

CheeseQueen57 said:

Scans

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. 

Thank you!

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

Armywife said:

Thank you!

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.

MD Anderson

I saw Dr Shannon Weston at MD Anderson. 

NoTimeForCancer

Armywife, thank you for

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.

Hopeful162

Follow up

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!

derMaus

I'd be uncomfortable

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.

Abbycat2

Welcome Armywife, but sorry that we have to meet

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

NoTimeForCancer said:

Armywife, thank you for

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.

Good to Know

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.

Armywife

Hopeful162 said:

Follow up

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!

Encouraging!

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

Armywife

Jairoldi said:

Stage iiib

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.

Me too!

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?

Armywife

derMaus said:

I'd be uncomfortable

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.

You are a blessing.

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!)

Armywife

Abbycat2 said:

Welcome Armywife, but sorry that we have to meet

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!

Thank you so much

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!

Jairoldi

Stage iiib

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.

Soup52

Welcome armywife! I had a Dr

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.

Jairoldi

Armywife said:

Me too!

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?

Feeling better

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. 

Armywife

Soup52 said:

Welcome armywife! I had a Dr

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.

Thank you

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!

Armywife

EZLiving66 said:

I'm Stage II, Grade 3 UPSC

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

Thank you

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!

EZLiving66

I'm Stage II, Grade 3 UPSC

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

Cass83

Just check ups, no scans

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

Cass83 said:

Just check ups, no scans

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.)

This is reassuring

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