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Are there any survivors from stage IIIB endometrioid endometrial adenocarcinoma grade 3 out there?

Valentine66
Posts: 1
Joined: Feb 2017

Hi,

 

I am glad I have finally found this Forum, after months of exhausting and useless researches. I am from Italy and, as far as I know, there is nothing similar in Italian. But it’s very important to get advice and support from other women with your own experience: all of you, ladies, are really great! I apologize for errors in my post.  

 

My seventy year old mum started bleeding in September 2015; she had a D&C but they could not do a biopsy. She finally had a radical hysterectomy on the 20th of November 2015, but they did not remove lymph nodes (so we don’t effectively know if they were positive). Doctors told us they wanted to prevent her from lymphedema in her legs, since she is overweight. She has been on Metformin for several years, as she is diabetic  (but this illness doesn’t really cause problems to her, since her glycaemia is not very high and it’s under control)  and on Ramipril for hypertension.

 

The final result was she had poorly differentiated Endometriod Endometrial Carcinoma grade 3 with some nodules (metastases) in Douglas peritoneum, just behind the uterus, but they said they managed to take it all out. That’s why they staged her IIIB. Unfortunately, there was also an 80 % myometrial invasion and images of LVSI (lymphovascular involvement).

It was a real shock!

 

My mother is a wonderful person: she is strong and always in an optimistic mood. She went through six rounds of chemo carbo/taxol and had 28 pelvic external radiations as well. She has already had four follow up appointments:

-         a CT scan one month after her surgery (on the 29th of December 2015), jus before the beginning of chemo and it was NED! May God be blessed!

-         another CT scan after five months (on the first of June 2016), after chemo and before radiation, and this was NED once again!

-         The she had a check-up in October 2016 and they did not notice anything abnormal in the vagina and in the pelvic area.

-         At last she had a third CT scan on the 21st of December 2016 and it was again NED!

 

Next appointment is fixed for May 2017, unless she has troubling symptoms. 

 

In spite of things going well, I can’t stop wondering whether she is going to have a long-time survival or she will have a recurrence. I know no one knows, not even doctors, what is going to happen in the future. Nevertheless, I can’t help having such thoughts.

Doctors here don’t like to be asked questions such as “How long will I live? What is the survival rate?”. They just tell you what treatments you have to go through.  

You do not get any psychological and emotional support: you are left alone with your anxiety and your grief.

 

The only time, just a few days after the first round of chemo, I dared ask the doctor what my mum’s prognosis was likely to be, he answered: “It’s just like gambling: you have to be lucky! Cancer is a very serious disease: very few people survive (maybe 5-10%) and make it”. These words were an icy shower for me!  

 

For a long period, I began navigating on websites and searching for news about endometrial cancer and trials, because, in case of a recurrence, I don’t want to be taken unawares, but it has become a real addiction. My mother, luckily for her, doesn’t like Internet at all and this has saved her so far. She trusts doctors and does everything they recommend.

 

In the end, I would like to know if there is anyone out there with a similar situation, to share information about treatments and to receive and give support. Are there any long-time survivors from Stage IIIB Grade 3 endometrioid endometrial carcinoma out there? With this situation, is it possible, according to your opinion and experience, to hope for a long-time remission and survival?

 

My mum has been doing great so far: she is an example for both my brother and me.

 

Hugs to all of you! Thank you for bearing me.

 

Valentine

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Dear Valentine:

thanks for sharing your mom's story and I am sorry that she has to go through this.   I was diagnosed with Stage 3A but grade 2 Endometrial Adenocarcinoma.  (found in uterus, cervix and left ovary)  That was back in 2005.  I was treated with chemo (Carbo and Gemzar) and then a round of  Brachytherapy.  They would not do Pelvic radiation although my gyne/onc said yes but the radiation oncologist said no because of how much scarring I had.   Around 2010 I had a recurrence and I only had surgery.  They only found 1 lymph node with microscopic cells so I went on a wait and see approach.

During my recurrence, because my original doctor retired, I sought out several different doctors because I had a doctor who said I had a recurrence, that it couldn't be operated on, etc.  I found a different doctor and he said he was able to operate.  I went with that one.  So what I am saying is that if at any time your mom feels uncomfortable with a certain doctor, see if she can get a second opinion.

As for survival rates, I wouldn't ask.  They are only guessing and are only going by statistics.   There's a saying on these boards that you are a statistic of 1.  

It sounds like your mom has a good positive attitude which is good.

I hope my post helps.  If you have any questions, please feel free to ask.

Kathy

takingcontrol58
Posts: 257
Joined: Jan 2016

Dear Valentine,

I was staged with Stage 3B, Grade 3 endometrioid adenocarcinoma in Nov 2014 at the time of my hysterectomy.  Two months later,
my cancer metastasized all over (liver, spleen, outer rectum, plus nodules on kidneys, spleen, outer colon).I had now advanced to Stage 4. 
7months later,I was in complete remission and have remained in remission since Aug 2015.

All metastases vanished without surgery.  My treatment was Taxol/Carbo (6 infusions) and metformin. I had no radiation. Metformin helped
put me in remission as I was pre diabetic and insulin resistant, with high levels of insulin growth factor-1 hormone (usually raised at the
diagnosis of endometrial cancer) and borderline high glucose levels.  I also had very high iron levels (ferritin). Cancer also feeds
off iron, and iron levels can increase in menopausal women. It was assumed I  had 4-6 mos to live because my cancer came
back so fast and was all over my body.

No doctor is a psychic or knows when you will die.  Only God knows. No doctor can predict the future. I never believed it was my time.

I don't believe cancer is a matter of luck. It takes hard work to get healthy again along with faith in God.  I lost 40 pounds, totally
changed my diet (eat mostly organic), eliminated processed food and almost all sugar (I was a sugar junkie) and alcohol, only drink purified water,
walk 2 miles/day and take 44 different types of supplements to keepmy body healthy and all my blood tests in balance. I also take
two low dose aspirins each day.  Taking one each day reduces the risk of any cancer by 25%. I also remain on metformin.
I was treated by an integrative oncologist.

The key is determining why cancer grows in your body and addressing those underlying health conditions.  Cancer grows because something
in your body is providing the fuel.  Once you determine what fuel in your body is the issue, then you remove the food supply for
new cancer to form.  And it is very important to boost your immune system with supplements. Only our immune system fights all disease
for us.

You can read my entire store if you search "NED from Stage IV metastatic endometrial cancer" (posted on this site January 10,2016).

As Kaleena says, a positive attitude is key. 

Let me know if you have any other questions.

Linda

 

 

Nellasing
Posts: 529
Joined: Oct 2016

I am so glad your search brought you here.  The ladies are so great at giving solid information and sharing their stories.  I am not a long time survivor "yet" I was diagnosed April 4, 2016 and had a radical hysterectomy April 28, 2016 which showed Grade 3a Stage 3 Endometroid Endometrial Adenocarcinoma.  I underwent 6 rounds carbo/taxol which ended Sept. 21, 2016.  I have been checked 3x since and they say everything is looking good.

I am on a very similar routine as Takingcontrol58 and also work with a naturopath, acupuncturist, IV therapist etc. who helped support my healthy body through the treatments and currently.

Your mom sounds like a wonderful person and having that positive attitude is a great gift!  She is blessed to have you and it's great that you are continuing to learn and gather information.  Try not to let it or the thoughts of it consume your life - each day is a gift and unwrapping it is a blessing, so I encourage you to enjoy it and take as much joy as you can from each and every one.  Your joy and zest for life will fuel your mom's and you both will benefit. 

Hope that makes sense.  You are welcome to come back as often as you need for anything that comes to mind.  We are here for you.  (((HUGS)))

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Valentine, my diagnosis was different than your Mom's but wanted to reach out to tell you that I am so glad that you found us! This is a great group of people who are willing to share experiences and opinion so please don't be shy about asking. Good luck to your Mom, you and your brother as you all continue this journey together. Kim 

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Valentine, I was diagnosed with clear cell endometrial cancer grade 3C  in august of 2015. I had robotic surgery, internal and external radiation, and 6 rounds of chemotherapy with carbo and taxol. After my Ct scan in June 2016 I was clear and am currently remaining so visiting my gynochologist every 3 months. I know my type has a good chance of reoccurring, but I remain hopeful and have never asked my doctor with a prognosis of how long I have to live. I am currently 64 and am enjoying life. Your mother is blessed to have you caring and concerned for her. Since im not yet a long term survivor I guess I have no other words of wisdom, but to enjoy all the time you have with her. I know there are others who have tried immunotherapy with some success also. Our prayers are with you.

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