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stage 4 uterine cancer

vanna2484
Posts: 4
Joined: Jan 2014

Hi,

My mom was just diagnosed with stage 4 uterine cancer.  Doc said it has spread to her bladder, bowel, chest and throughout her lymphatic system. 

After originally planning to do a hysterectomy the doctor has decided based on the PET scan results that surgery will do no good at this point.  She wants her to start chemo next week.

My mom is 62 and in relatively good health.  She is not overweight and never had any previous health problems.

This is so disheartening to us as the doctor emphasized that there is no cure but the key would be to try and prolong her life as long as they can.

I"m trying to see if anyone else has been in this situation.  I'm not sure what to do at this point I was hoping they would at least try to remove some of the cancer.  Not sure if we should get a second opinion.

Any advice or experience details would be much appreciated!!

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

I am sorry you have to come to this board, but you are at the right place.  While I am not stage 4 i am a true believer that we can beat statistics.  Reading through your question on a second opinion.  My recommendation is it never hurts.  I did and ended up with a third as we needed a tie breaker. My dr was very supportive and so was insurance. 

 

I  am not familar with all types of treatement but it sounds like they want to try and rid your mom of the cancer cells through the chem asap.  I have heard chemo first and then operation.    Did you ask the Dr the exact expectations of the chemo first.   How will they track the success,  periodic PET tests?

 

the words of no cure,  every Dr describes it differently.  My second opinion at Dana Farber said no cure and I was stage 1. Her words were remission.  My local oncologist uses words such as beat it. 

 

I have read many posts here from other woman who have stage 4 and am sure they will be quick to provide some insight.   

 

Hang in there and ask as many questions as you need, get as many opinions as you feel  you need. 

vanna2484
Posts: 4
Joined: Jan 2014

Thank you for responding.  The team of doctors at duke cancer center told us that doing the hysterectomy now would not help anything.  They said they don't do surgery unless they can get most of the cancer out and in my mom's case it has spread through her chest and lymphatic system.  They said 3 rounds of chemo then do another ct scan to see if it is responding.

I have read online that sometimes getting rid of some through surgery will help chemo rid more of the cancer cells but her doctors don't think that the case. 

We supposedly have one of the best cancer doctors around but they don't seem to be giving us much confidence or hope. 

 

SUNGRANNY
Posts: 81
Joined: Dec 2012

Hello Vanna,

Sorry to hear that you and your mom are going through this, but first off want to say how fortunate that your mom is to have a daughter like you advocating, caring and loving her.  

I was diagnosed with Serous Uterine Cancer in Nov 2012 at the Duke Cancer Center which was staged at 4 after surgery (due to spread to lymph nodes and bladder.)  I did go through a total hysterectomy and debulking surgery, but dr could not remove the effected spinal arterial lymph nodes.  Dr said, "we hope the chemo will either shrink or stabilize the lymph nodes."   Most recent CT Scan, Dec 2013 shows that the lymph nodes which shrunk dudring the chemo treatments are stable.  So hang in there, and know that many of us across the country, and in other countries, will be thinking of you and your mom with healing thoughts and prayers.  

I'd like to share several thoughts and comments, and will also send an email direct to vanna2484 (you should find it in your inbox shortly,) with additional information.  

I found the Duke gyn-oncologists to be aggressive in their recomendations, so if they don't advise surgery,  but rather chemo to shrink all possible, it makes sense.  I wouldn't be discouraged by their cautions in terms of execting a "cure" from treatment.  I too have learned to think of cancer as a chronic disease that needs to be managed, similar to diabetes.  

Has your mom signed up online for DUKE MYCHART?  https://www.dukemychart.org/home/default.asp.  She can look at her tests and records online, and can send messages or questions directly to her providers.  

If you or she have questions, ask.  Hopefully they gave you a telephone number for the Gyn nurse.  I've called many times with questions and messages for the dr.  Generally they are very responsive.  I bring a list of questions to each dr appt.  

The patient support services at the Cancer Center can be a big help for your mom and her caregivers.  I've gone to the Chemo Ed class, used the Resource Library, gotten a wig, hat, and scarf from the boutique, and meet with a Cancer counselor - all services without additional charges.  Hopefully they gave you the book "FINDING THE CAN IN CANCER", written by 4 women diagnosed with stage 4 cancer.  If not, the books are readily available there.  Check out the monthly calendar of support services and the website - http://www.dukehealth.org/cancer/support-services.  

I also went to Duke Integrative Center and met with a nutritionist, who recommended supplements to support the chemo treatments and lessen the side effects.  I contacted the gyn-onc nurse, who set up an appt with me to meet with the oncological pharmacist at the Duke Cancer Center to review the list with my particular chemo drugs.  They made only mnor changes.

I folowed the suggestions from this discussion board to walk everyday, and I think that was quite helpful - even when I hurt.

I used a wonderful CD for guided visualization,PREPARE YOUR BODY FOR CHEMOTHERAPY AND RADIATION by Sue Van Hook. I think this was very helpful for me physically, emotionally and spiritually.  I used it the days before the chemo, and during the treatments.  I'm happy to lend it to you if interested - more on that in the separate email.  I also use a healing guided visualization for cancer survivors by Bellaruth Naprostek.  Because my treatments lasted 5 hours, I brought a small rolling bag filled with goodies such as my DVD/CD player, book, DVD, etc.  

 Because of the steroids given at the start of the treatments, I felt fine for the first day after treatments, and then .... crashed when the steroid wore off.  So even though feeling good, not a bad idea not to take on trying to take on some major activitiy (Chemo nurse told me about the person who started to paint their house the day after chemo, until the steroid wore off.)

If you are in the Durham- Chapel Hill area,  Cornucopia Cancer Support Center, 5517 Durham-Chapel Hill Blvd #1500, Durham, NC 27707.  (919) 401-9333, http://www.cancersupport4u.org/  They offer support services, support groups, resources, referrals, etc.  They have wonderful massages available for those going through cancer treatments and their caregivers (donation basis.)  The massage therapists are trained to work with poeple who are going through chemo.

Another resource that was VERY helpful for me.   WINDRIVER CANCER RETREATS AND PROGRAMS,  Tryon, NC.   http://www.windriverservices.org/   They facilitate a WONDERFUL Retreat - Women's Gyn Retreat, this year it will by March 21-22 in Winston-Salem.  Last year I was fortunate to be able to attend between my second and third cheom treatments.  It was so good for me to be with other women with GYN cancer.  They provide room, activities, support, fun, healthy food, and a wonderful experience.  I highly recommend it for your mom.  Contact them soon, as the retreat fills quickly.  Shannon and Dave at Windriver are awesome.

 Hang in there Vanna,

Sungranny

SUNGRANNY
Posts: 81
Joined: Dec 2012

Hello Vanna,

Sorry to hear that you and your mom are going through this, but first off want to say how fortunate that your mom is to have a daughter like you advocating, caring and loving her.  

I was diagnosed with Serous Uterine Cancer in Nov 2012 at the Duke Cancer Center which was staged at 4 after surgery (due to spread to lymph nodes and bladder.)  I did go through a total hysterectomy and debulking surgery, but dr could not remove the effected spinal arterial lymph nodes.  Dr said, "we hope the chemo will either shrink or stabilize the lymph nodes."   Most recent CT Scan, Dec 2013 shows that the lymph nodes which shrunk dudring the chemo treatments are stable.  So hang in there, and know that many of us across the country, and in other countries, will be thinking of you and your mom with healing thoughts and prayers.  

I'd like to share several thoughts and comments, and will also send an email direct to vanna2484 (you should find it in your inbox shortly,) with additional information.  

I found the Duke gyn-oncologists to be aggressive in their recomendations, so if they don't advise surgery,  but rather chemo to shrink all possible, it makes sense.  I wouldn't be discouraged by their cautions in terms of execting a "cure" from treatment.  I too have learned to think of cancer as a chronic disease that needs to be managed, similar to diabetes.  

Has your mom signed up online for DUKE MYCHART?  https://www.dukemychart.org/home/default.asp.  She can look at her tests and records online, and can send messages or questions directly to her providers.  

If you or she have questions, ask.  Hopefully they gave you a telephone number for the Gyn nurse.  I've called many times with questions and messages for the dr.  Generally they are very responsive.  I bring a list of questions to each dr appt.  

The patient support services at the Cancer Center can be a big help for your mom and her caregivers.  I've gone to the Chemo Ed class, used the Resource Library, gotten a wig, hat, and scarf from the boutique, and meet with a Cancer counselor - all services without additional charges.  Hopefully they gave you the book "FINDING THE CAN IN CANCER", written by 4 women diagnosed with stage 4 cancer.  If not, the books are readily available there.  Check out the monthly calendar of support services and the website - http://www.dukehealth.org/cancer/support-services.  

I also went to Duke Integrative Center and met with a nutritionist, who recommended supplements to support the chemo treatments and lessen the side effects.  I contacted the gyn-onc nurse, who set up an appt with me to meet with the oncological pharmacist at the Duke Cancer Center to review the list with my particular chemo drugs.  They made only mnor changes.

I folowed the suggestions from this discussion board to walk everyday, and I think that was quite helpful - even when I hurt.

I used a wonderful CD for guided visualization,PREPARE YOUR BODY FOR CHEMOTHERAPY AND RADIATION by Sue Van Hook. I think this was very helpful for me physically, emotionally and spiritually.  I used it the days before the chemo, and during the treatments.  I'm happy to lend it to you if interested - more on that in the separate email.  I also use a healing guided visualization for cancer survivors by Bellaruth Naprostek.  Because my treatments lasted 5 hours, I brought a small rolling bag filled with goodies such as my DVD/CD player, book, DVD, etc.  

 Because of the steroids given at the start of the treatments, I felt fine for the first day after treatments, and then .... crashed when the steroid wore off.  So even though feeling good, not a bad idea not to take on trying to take on some major activitiy (Chemo nurse told me about the person who started to paint their house the day after chemo, until the steroid wore off.)

If you are in the Durham- Chapel Hill area,  Cornucopia Cancer Support Center, 5517 Durham-Chapel Hill Blvd #1500, Durham, NC 27707.  (919) 401-9333, http://www.cancersupport4u.org/  They offer support services, support groups, resources, referrals, etc.  They have wonderful massages available for those going through cancer treatments and their caregivers (donation basis.)  The massage therapists are trained to work with poeple who are going through chemo.

Another resource that was VERY helpful for me.   WINDRIVER CANCER RETREATS AND PROGRAMS,  Tryon, NC.   http://www.windriverservices.org/   They facilitate a WONDERFUL Retreat - Women's Gyn Retreat, this year it will by March 21-22 in Winston-Salem.  Last year I was fortunate to be able to attend between my second and third cheom treatments.  It was so good for me to be with other women with GYN cancer.  They provide room, activities, support, fun, healthy food, and a wonderful experience.  I highly recommend it for your mom.  Contact them soon, as the retreat fills quickly.  Shannon and Dave at Windriver are awesome.

 Hang in there Vanna,

Sungranny

NoTimeForCancer
Posts: 461
Joined: Mar 2013

There are woman here who were diagnosed stage 4 and have not just laid down and died.  62 is young, and realitively healthy?  WHY NOT FIGHT?  I love the Winston Churchill quote, "Never, ever, ever, ever, ever, ever give up."  Of course, your mother will let her wishes be known and supporting her will mean a lot to her.

Please let us know if you have questions and I pray God holds your mother in His loving hands at this time.

Teamkelly's picture
Teamkelly
Posts: 54
Joined: Sep 2012

So sorry to hear about your Mom.  Are they giving you a name for the cancer cells?  I know it is in the uterus but have they said carcinoma sarcoma? It is really important to know exactly what you are dealing with, if the biopsy has come back the doctor should be able to tell you.

 

Nicki

vanna2484
Posts: 4
Joined: Jan 2014

it is endometrial adenocarcinoma grade 3 

lillefty's picture
lillefty
Posts: 22
Joined: May 2013

Hi - 

Sorry to hear about your mom's diagnosis but glad you found this board. The women here are wonderful, wise, warriors and can provide lots of information and support. 

I found this board because my now 70 year old mom who has MS was diagnosed with stage 4 grade 3 clear cell uterine adenocarcinoma in April 2013. It had spread to her lymph nodes (they did not remove any because it was in too many of them) and her bowel. Fortunately for her, she was able to have a hysterectomy and that was followed by 6 rounds of chemo. Because the cancer had spread so far already the doctors did not recommend radiation.

She received the wonderful news that she had no evidence of disease following a scan after completing her treatment in November of 2013. It seems all doctors talk about it a little differently but my mom’s dr says that she has “no evidence of cancer” but never talks about it as being cured because it can always come back (clear cell is an aggressive subtype). When the dr first diagnosed my mom he told her she might have two years if she was lucky, now he doesn’t talk about any end date. Don’t let the fact that they don’t talk about curing the cancer make you lose hope.

I hope my mom’s situation will give you some hope – as others have mentioned your mom’s attitude (and your attitude as her support system/caregiver) is really important. My mom also radically changed her diet and the products she uses on her body, used visualization and meditation, and supplemented her diet with a lot of supplements recommended by a naturopath. We attribute her success in beating the cancer back so far to all of these things. Also as others have said – I have read that sometimes people have chemo first to shrink tumors before they have surgery.

One question for you – is your mom seeing a gynecologic oncologist? The women on this board mention the importance of being treated by a specialist often. If not perhaps you should consider getting a second opinion from one. 

I hope this is helpful. Hang in there and take it one step at a time. Sending positive healing thoughts. 

 

Lisa 

NoTimeForCancer
Posts: 461
Joined: Mar 2013

Lisa, it is so important for us to see stories like your mom's.  Thank you for sharing and reminding us all. 

Goldheart
Posts: 36
Joined: Sep 2013

Lisa, you have given me hope. My mom 73 has UPSC stage 3C and we are sick of hearing the doctors says the chances of recurrance is very high. 

HellieC
Posts: 439
Joined: Nov 2010

Please don't be disheartened.  Just because there is no cure, it doesn't mean there is no treatment!  Think of illness like Parkinson's, Diabetes etc.  There is no cure, but they can be controlled and managed for many years.  I believe endometrial cancer to be the same.  I am on my third recurrence and it is being controlled with hormone therapy.  So if chemo doesn't suit your Mum, then hormones may be a useful option.  The most important thing is a positive attitude from you, your Mum and your medical team.  Never, ever give up - sometimes a treatment which had a small chance turns out to be the one that works.

Kindest wishes, Helen

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

firstly, Iwas diagnosed in July 2010 with Stage IV B Grade III Uterine Adenocarcinoma clear and ...and...  and.

Dr. Peter Dotino onco Gyno at Mt Sinai operated took everything out, but as the song goes, Someone (God) let the Dogs Out!

i had four recurrences, four rounds of chemo of varying protocols, five rounds of radiTion and another surgery, plus Stent put in my Ureter as a tumor was pushing on it causing urine backup and messing up kidney function.

i stopped, on my own decission , two years ago ,against docs advice, chemo.

  I go to work, do excercize, oh, I'm now 68, diagnosis at 65, eat and try to live out according to David Servan Schreiber's book, Anti Cancer.

the Warriorettes on this site help me enormously even when I just lurk, but I try to reach out to others. As they have reached out to me.

i have many challenges, including have gone blind in one eye nine years ago unrelated to cancer. I am writing from a skiing holiday!

Hello your mom believe in herself and you believe in her.

keep fighting, every day is another day won, another gift from God.

many hugs and be strong for her and your whole family,

Sara

vanna2484
Posts: 4
Joined: Jan 2014

Thanks for the encouraging words everyone.  Me and mom ended up going to Cancer treatment centers of america for a second opinion based on a recommendation from someone my mom knows.  They were much more helpful and caring than the doctors we spoke with at duke. 

She had her first round of chemo on January 24th.  She also had to undergo a blood transfusion before they could give her chemo as she has lost a lot of blood over th epast year.  It's funny that the doctor at CTCA noticed right away that her hemoglobin was extremely low but the doctors at duke never even mentioned it. We go back on Feb 17th for another round.  The oncologist wants to do 3 rounds of chemo first and then do another scan.  He told us much more about our options than the other doctors and we also found out it hasn't invaded her bladder like duke had originally thought.  She does have a lymphnode in her chest thats cancerous so that's why he wants to try chemo first rather than surgery first. 

I like CTCA because they automatically give her a naturopathic doc as well as dietician and gynecologic oncologist.  She will see all of her doctors each time she goes and they work together to make sure she is taking the right supplements and diet to work best with the chemo.  My mom is a lot happier with the treatment she is receiving from CTCA and she is very hopeful and happy about beating this now.  After she went to duke and got the news from them all she did was cry and was very scared and depressed.  So far she is doing very well with the chemo no sickness so far just a little tired.  Everyone up there is so nice and so comforting.  I have only heard good news from patients there and it is also good to talk with people face to face there that are going through the same things.

mobmob
Posts: 10
Joined: Jun 2012

I was diagnosed with stage 4 endometrial cancer in Oct. of 2010. All I can say is that every time I see my OBGyn oncologist he says, "You've done much better than anybody thought you would." I only mention that in order to emphasize the thought that doctors cannot predict what will actually happen in your particular case. You may well do spectacularly! I'm glad that the doctors and specialists you're dealing with now realize that.

Kaleena's picture
Kaleena
Posts: 1115
Joined: Nov 2009

Dear VAnna

since you mentioned a second opinion it probably wouldn't hurt getting one (or two).   I was diagnosed back in 2005 with stage 3 grade 2 endometrial adenocarcinoma.    The doctor told me too that there was no cure but did say it is treatable.   and in 2009 I was told that since they couldn't remove a tumor I had because they couldn't get it all and wanted to of chemo right away I went and got a second. And third opinion.   This too was from one of the best in my area.   I ended up getting a doctor 3. Hours from my home.   This doctor successfully removed the tumor.   

Please know that everyone one is different.   I am just telling you this so you will go with your instincts.   Your mom must do what is best for her and s second opinion seems logical if it makes your mom feel confident with the treatment she wishes to take.    No one should feel pushed into treatment .   in response to doing chemo first prior to surgery i know this is fine on many occasions.   You need to ask why they prefer this options first.    Keep asking questions Until you understand    They shouldn't get mad if you do.    

my best to you and your mom.   

Kathy

PS.   i just saw that you did get a second opinion.    I am glad your mom feels more at ease at CTCA and has started her treatment.   

soul-mate's picture
soul-mate
Posts: 59
Joined: Feb 2014

Hi! Vanna2484

 Going through same situation no op. dx aug.2013 had  2 radiation 5 carbo taxol chemo switched to gemcitabine due to peripheral neuropathy. Going on 7 months Stage 4b advanced endometrial cancer with metastases to most bones. compressed fracture to spine. She has no feeling in mid section. Dr. said no cure but will treat the disease & control pain & nausea basicly palliative care and say's quality of life is important. She has pain well controlled with no loss of mental capacity,never vomitted once through all this. She has limited mobility and making the best of what's happening. She has a team of 5 gyno-onco.treating her disease so we put our faith in their combined yrs. of experience. All is well considering. Look at & be positive no matter what and it will give you strenght and make the journey a bit easier to take.I don't know where this journey will take us. My soulmate is only 61 years young and has no intention of giving up. I hope everything goes on the positive side for you. Best wishes.

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