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Shocking news

ayostacey
Posts: 57
Joined: Sep 2015

Hello. My sister was diagnosed at the begining of this year with Uterine cancer. Prior to surgery, her CT scans were negative for masses anywhere else. She had the surgery robotically, she was staged 1A I believe, or maybe it was 1B. The cancer was contained to uterus, into the wall, but less than 50 percent. Nodes were removed and tested and they were negative. She had radiation just as a precautionary measure. (Brachytherapy).  The radiation ended a couple months ago. BTW her surgery was in April. In August, she had a stomach pain while vacationing out of town. She went to the hospital and they did a CT scan to make sure it was not her appendix. The CT scan showed multiple small masses in different areas, one was pelvic wall, intraperitoneal and extraperitoneal and i think one other area. It said it was indictive of lymphadenopathy metastic (spelling?) So she went back and made an appointment with her surgeon. 3 weeks later he finally saw her and confirmed its more cancer. They want to biopsy it (he's electing the needle/CT scan method), and they said likely followed by chemo and homone therapy. Can anyone shed any light on this for me? The uterine cancer was so curable they said. And now, not even 6 months later, all this. Even after clean CT scan prior to surgery and negative lymph nodes. How is this possible and what are her chances of survival now?  We are so worried. She is only 46 !!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2462
Joined: Mar 2013

ayostacey, there are different types of uterine cancer.  Type I is a very curable cancer that usually can be treated with surgery.  Type II is a group of more agressive uterine cancers, for example UPSC, MMMT, there are a few others.  

I hope your sister has a gynecologic oncologist, they specialize in 'below the belt' cancers and will best be able to help her.

I am sorry you have had to find us, and I hope you come back to ask questions.  Sadly, cancer can be any age, and the thought the gyncecologic cancers is only for older women, there are too many young women here (and who I have met) who will tell you otherwise. 

There is a periotoneal cancer thread here, it is a little quiet, but the women with gyn cancers do tend to skip around to all the gyn threads. 

As for her chance of survival I will tell you she is a statistic of one.  46 is young, and she may/may not have other health issues.  It is very scary but a good group here if she would like to ask questions. She is not alone and is welcome here, as are you.

 

ayostacey
Posts: 57
Joined: Sep 2015

She really has no other health issues. She is diabetic, but takes pills, not insulin. But thats really it. Unfortunatley there is cancer on both sides of our family so she's always been kind of practive when it comes to screenings. This is just hitting us hard because of her age. I want to believe that she is going to be ok, but  I have no idea. She has 2 teenage boys!  And  yesss...she does have a gynecologic oncologist. They're supposed to be some of the best. Even though, I dont know how they couldve missed this :(

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2462
Joined: Mar 2013

ayostacey, I can't even BEGIN to imagine what my family was thinking when I told them.  I know they were as terrified as I was, and continue to worry about it now.  It does sound like she has a lot of good things in her favor, including a caring family, so while it is a battle, she has lots of things in her favor.

There really isn't an effective screening for uterine (or ovarian for that matter) cancer, so you have to hope you catch it.  

We are here for both of you, please keep us posted.

Kathy G.'s picture
Kathy G.
Posts: 186
Joined: Dec 2012

Hello ayostacey.

I am really sorry to hear about your sister! I was also diagnosed w/ 1a/grade 1 cancer. The only treatment I required was the hysterectomy. However, most cancer patients are advised of the importance of follow-up appointments due to the possibility of a reoccurence...no matter how early the cancer was caught.

I believe statistically that a stage 1 diagnosis has about a 95% cure rate. Despite that there are reoccurences. I have heard the 1st two years is when a reoccurence is most like to happen, but I have seen women who get it again after the 5 year mark.

So prayers for your sister & your family. This is a tough pill to swallow when you are pretty much assured all will be okay. It sounds like the good thing is this has been caught very early - 6 months after her initial diagnosis.

Please feel free to visit often & maybe encourage your sister to come, too. There will be other ladies who will be able to better respond to your questions.

Kathy

ayostacey
Posts: 57
Joined: Sep 2015

That is what I am trying to tell her, that at least they found it early again. But it just seems like there are small tumors in mulitpile places

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I am so sorry that this happened to your sister. It is so unusual to have a recurrence at her stage and grade. But there is still time and chemo has a good chance of taking care of these mets. I am sure you are both very frightened but there are many weapons in our arsenal and there is every reason to think that everything will work out for the best. 

You will find that the ladies on this board are very knowledgable and a great shoulder to lean on. Sandy

ayostacey
Posts: 57
Joined: Sep 2015

Thank you that is very hopeful and much needed words of encouragement.

txtrisha55's picture
txtrisha55
Posts: 676
Joined: Apr 2011

Best group of ladies on this site  we all have ben through this cancer journey at a patient or caregiver or both. Each cancer is different as each person is.  Tell your sister to try and keep a positive attitude I know it is hard but it does help. I was stage 3c1 withgrade 2 cancer in April 2011  Surgery and chemo and now 4 years NED. It can be rough but with a good support team behind her it will be easier to get through.  Keep coming back and have your sister join too. Lots of support here too, trish

ayostacey
Posts: 57
Joined: Sep 2015

HI, thanks for your response, so yours had spread outside initial area also? Can I ask where it had spread?

txtrisha55's picture
txtrisha55
Posts: 676
Joined: Apr 2011

Tumor in uterus wzs stage 1 A and less than .o3 through the uterinewall but I had one left pelvic lymphnode with 2 microscopic cells in it so I was upgraded to stage 3 c 1. I have carcinoma sarcoma or what use to be called MMMT uterine cancer which is a high grade aggressive cancer. I was treated at UT Southwestern cancer center in Dallas, TX and I had the best dr for me. She explained in detail and made recommendations in layman terms. I love my dr. I am 4 years out and I still feel great but yes I still worry about a recurrance but I do not let it contol me. Trish

pinky104
Posts: 540
Joined: Feb 2013

Nothing in this life is certain.  I was found to have a big uterine polyp, which my GYN assured me would most likely be benign. It wasn't. Instead of the robotic surgery I was supposed to have at another hospital, the GYN/onc my GYN referred me to  came in to the room where I was getting prepped for surgery and told me he couldn't do the surgery robotically after all.  He finally had looked at my CT scan done in another hospital where I was working at the time, and he saw how extensive my cancer was.  It had spread from the uterus to both ovaries and the small intestine.  I was told ten days later than I had stage IVb, the highest possible stage, of UPSC, a very aggressive cancer.  I read a few months ago in a society of gynecological oncologist's report that in that stage, I had a 9% chance for five year survival. At the time my oncologist told me that he didn't like to discuss odds of survival because if your cancer had a 90% survival rate and you were in the other 10%, what good would that 90% chance be to you?  I started preparing myself for living a lot shorter life than I had previously expected.  I was sure the cancer would kill me.  I know my little brother thought that.  While I was in the middle of chemo, he was the one who dropped dead, of a heart attack at age 57.  He hadn't been to a doctor in years and was a strong guy who nobody ever thought would die young. My mother, my father, and my maternal grandmother had all survived cancer.  My mother had breast cancer twice, ten years apart. She died of pneumonia at 90 in spite of having a number of other very serious medical conditions throughout her life.

Here I am today, 5 years out, almost 67 years old (next month) still alive and with no evidence of disease.  I have a mass in my peritoneum, but I've had CT scans 3 times and a PET scan once, and the mass hasn't grown. My GYN/Onc wasn't sure what it was at first, but he no longer feels there's any chance it might be cancer. A nurse in his office told me it could be a fluid collection from having had my lymph nodes removed. My GYN/onc isn't going to do any more scans unless there are new symptoms.

My feelings are that if you expect the worst, things will either be what you expect, or, if not, will only turn out better.  On the other hand, look at what happened to me. I had a 91% chance of dying, and here I am in spite of the odds. Nothing in this life is for certain.   

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1399
Joined: Jun 2015

What a GREAT post. Thanks so much.

Here's to all of us staying strong, resolved to win and thriving throughout our journeys.

Congrats on your 5 years NED.

Abbycat2's picture
Abbycat2
Posts: 642
Joined: Feb 2014

You mentioned your sister's stage, Stage 1A or 1B, but do you know the grade of her cancer? It can be a grade 1, or 2 or 3, with grade 1 being the least aggressive to grade 3 which is the most aggressive. Aggressive cancer- like mine (UPSC) spreads quickly. Cancer can spread through the blood stream or lymph system. It can also just become a bigger mass and spread that way. The fact that your sister's metastasis was caught early is a good thing. With proper treatment, probably chemo, she can go back into remission. Don't give up hope! She is young and her youth is in her favor.

Warm Wishes,

Cathy

ayostacey
Posts: 57
Joined: Sep 2015

Bless you for your words of hope. Prior to surgery, he guessed a 1, but after surgery he said it was graded a 2.  Lymph nodes that were tested at the time were all negative. She had the radiation just for precautionary measures.  It was a CT scan she had less than 4 months after the surgery in an ER becuase she was having stomach pain that showed 5 or 6 small abdomenal and pelvis masses.  She is going for the needle biopsy as soon as they can coordinate the Dr's/Machine...although she also is seeking a second opinion. 

ayostacey
Posts: 57
Joined: Sep 2015

Pinky104, thank you for your detailed reply.  It is so encouraging and I've passed on your message to my sister. She is now seeking a second opinion in Boston, MA because we somehow feel like the Dr's at Women and Infant's in Providence RI dropped the ball somehow, considering they told her that there was a 99.9% certainty that it wont come back...and less than 4 months later its back.  I think its always good to seek a second opinion anyways, from what I've been reading. Thank you again for your encouragment.

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

What a great post!!  I'm stage IVbUPSC as well, and I'm two years out.  Should have one foot in the grave according to statistics, but I'm basically asymptomatic and my day to day life is just fine.  One day, one step at a time.  Things are not always what they seem.  Good for you for reminding us!!

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

I'm so sorry to read that you and your sister are faced with this after an early stage initial diagnosis.  Sadly, around 5% of recurrences are from early stage patients - I am one of them.  But, please take heart.  There are many treatments possible - radiotherapy, surgery, chemotherapy, hormone therapy.  Your sister's medical team will advice on what they think is most appropriate to her situation.  It is possible to live a good quality of life, even after recurrence of this beast.  I recurred 7 years after my initial surgery, but I am still here, living well, having had various treatments (radiotherapy, surgery, Cyberknife, hormone therapy).  Keep strong!

Helen xx

ayostacey
Posts: 57
Joined: Sep 2015

Thank you HellieC, do you think that becuase hers came back so quickly that it may be more of a challenge than if it had come back years later? When she went to the Dr's with the CT from the ER (the same Dr that told her 99.9 percent its not coming back) she was in a daze when he said its cancer again. She didnt ask too many questions! So my mother called the next day and asked more questions to the nurse. She basically said they can get it to go "away" but its a lifelong battle since it will most likely keep coming back. My sister is now going to seek a second opinion to see what her treatment options are. She is young and has two teenage boys and is willing to do anything that will give her better chances of long term survival.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

I really don't know whether it's time to recurrence that has any bearing on how much of a challenge it is, or whether it is more related to the grade of the original cancer (higher grade - tends to be more aggressive). It sounds like a second opinion is a good way for your sister to get as much information as possible about her treatment options, so she can choose the path that's best for her.  But please don't lose hope - there are treatments out there!

Kindest wishes
Helen xx

artist49
Posts: 87
Joined: Oct 2011

You mentioned that the scan showed lymph node involvement,

which can be extremely frightening, so let me tell you there is hope.

My disease (UPSC) was discovered in August 2010 and cancer was found

in all 40 (yes 40) lymph nodes tested besides being all over the pelvic area.

My disease was more advanced than  any I've read on this board since 2010.

But  I'm still in remission since frontline treatment, so  nothing is  hopeless.

I follow a strict diet of proven anti cancer foods.

ayostacey
Posts: 57
Joined: Sep 2015

God bless you! Very encouraging and I have been researching anti cancer foods as well!!

Cucu me
Posts: 214
Joined: Apr 2015

Can you share more about your diet,please. Also did you have chemo or radiation after surgery?

I'm on diet too, but I'm not sure is it the right one.

Thanks

artist49
Posts: 87
Joined: Oct 2011

I had chemo but no radiation after surgery. My diet is a mishmash of cancer

fighting foods  - black raspberries, whole lemon, flaxseed, shallots, garlic, turmeric,

tomato paste, carrots, variety of nuts,  sesame, pumpkin and sunflower seeds,

wild salmon, organic chicken and eggs,  wild rice, granny smith apples,

1 date and fig a day,  mushrooms, kale, collards, beet greens, spinach, purple

potatoes,  all colorful veg, all cruciferous  veg, green tea, avocado, sweet potato.

You probably get the idea. I include a little of almost everything   every day.

If you have any questions, just ask.

Cucu me
Posts: 214
Joined: Apr 2015

Good and healthy one. Dairy?

I'm eating no diary, no meet, exept fresh chicken, no sugar, etc.

Dry fruit yes and more than one per day, also I eat nuts, honey.

Organic when posssible.

It's hard, omg, especially after chemo, but I'm trying.

Recently no turmeric, can not make myself to take it.

Otherwise I'll drink it with almond milk with a bit of olive oil and black peper.

artist49
Posts: 87
Joined: Oct 2011

No dairy, sugar, only rarely a little pasture fed beef,

1 dried date a day, and I forgot to mention hempseed-

I sautee shallot, garlic and greens in a little coconut oil,

then sprinkle on turmeric and black pepper , add tomato paste

sauce (enhanced with  liquid stevia and nutritional yeast and

a spice like  oregano etc, Then I add 2 tbs. hempseed   for

protein and some seasalt. This is part of breakfast. 1st part

is my black raspberry lemon etc. smoothie. Ask me anything.

Cucu me
Posts: 214
Joined: Apr 2015

Yeah, pretty strict.

But if you are in good health, it's worth it.

Thanks, I may send you a private message or we can start a new topic about strict diets and their results,

so everybody can read and know.

ayostacey
Posts: 57
Joined: Sep 2015

Great information, thank you for sharing!

artist49
Posts: 87
Joined: Oct 2011

I can give you the recipes I use to combine this

assortment of cancer fighting foods if you wish, Just ask.

ayostacey
Posts: 57
Joined: Sep 2015

So just an update, my sister went to get a 2nd opinion from a Dr recommended by her boss who has been in a lot of cancer research. He looked over her initial Dr's recommondations, and agreed that the type of chemo they want to give her (not sure which one , will get the name shortly) is the same one that he'd give. He said it is tried and true. He also said to stay away from clinical trials. He told her, that he doesnt really tell patients that but "off the record" he is telling her that clinical trials help people in the future, but wouldnt be of any help to her.  So chemo it is ! She went for her needle biopsy today and will meet with her Dr next week to discuss the plan of action.  I'm hoping that when the Dr said it's "Tried and true"...that he fully expects her to go into remission......for a long time!!

I read someone's post today where they said that she was told once that the longer the reoccurance happens after initial treatment, the better your chances are of it staying gone again. That worries me since my sister's  was back just a few months after surgery and radiation.

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