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Update on my sister

ayostacey
Posts: 57
Joined: Sep 2015

Hello ladies, I dont know if you remember me, but I used to come here and ask questions to you guys in regards to the treatement my sister was going thru.  She was diagnosed in April 2015 with stage 1A uternine cancer. She had the surgery in May 2015. It was less than 30 percent thru wall when she had the surgery. Total hysterectomy and nodes were tested and all were negative.  They reccommended ratiation becuase they thought it might be a grade 2 cancer, which was a little more aggressive than what they orginally had guessed.  So they did the radiation (internal) just to kill any cells that might have been left behind.  She finished the radiation without much discomfort and by July 2015 (just a few months after surgery) she was in New Hampshire vacationing with her husband and 2 teenage boys and about 5 of the kids' friends and she got bad stomach pains. She thought it was her appendix so went to ER in NH. They did a CT scan and told her she should go back to see her Oncologist.  The cancer had come back and was already in several different areas, 7 tumors in total. None were in her organs though. They started her on Carbo/taxol ...she did 3 rounds of it and then had a CT scan done....some had shrunk a little...some had not shrunk at all and now there was a couple in her liver.  They continued with the other 3 rounds of Carbo/taxol...then scanned again.  Same results...mixed results...nothing promising.  She then changed Drs.  Started seeing one in Boston...he put her on a different chemo.  I cant remember the name of it off the top of my head...it made her hair come back but gave her an awful rash.  After a couple rounds of it, her protein in her urine was too high.  They switched the chemo again.  After one round, she had some weird liver readings and he stopped the treatment, sent her to Dana Farber to seek a clinical trial.  She went there and heard about what they had to offer, and then consulted her Dr in Boston, he said in all honesty, at this point, its only about prolonging your life becuase they cancer is not curable anymore.  This was 1 year after being initially diagnosed and told that if she was ever going to get cancer this is the best one to have becuase it was very curable and since hers was stage 1A, she had a 95% chance or better of it never coming back.  The Dr in Boston had his own trial which was a pill....but she had to convince the company she was well enough to take it because it was very expensive and they didnt want to do if she was going to die anytime soon.  So she pulled herself together and convinced them and they told her they would mail it to her and she'd get it in 2 days.  That night she ended up in the ER again because she was so weak from not eating , pain etc.  The meds arrived at her house but her oncologist told her husband that she had to be home to start taking them, they couldnt administer it at the hospital...so she went home. She took it once but honeslty at that point, she was at the end....no longer eating, hospice had already come to put a bed in the living room, she was taking so much morphine for pain that she was barely awake at all.  Her breathing became more and more labored as people came by to see her while she laid sleeping.  A few days later, on mothers day, she died.  I honestly cant even believe Im writing this.  3 months later and its all still so surreal to me. She was only 45 years old..she has 2 teenage boys she left behind.  I cant seem to get my emotions in check..I cry everyday and I have sorrow for our family and her boys and husband...anger that God would do this...anger at the Drs, thinking maybe there was something more they couldve done....I'm just so so so so sad.  It's not fair. It wasnt supposed to be like this. 

I guess all I can say now is Thank you for all the times you guys answered my questions as I battled through this with her.  I felt useless then and useless now, but  you guys helped me as much as one can be helped in this situation.  My best advise is be proactive...dont let the Drs decide whats best for you...YOU decide whats best for you and if you dont think a dr is being aggressive enough, then find another.  And for the love of God, if anyone is showing any signs or symptoms of this monsterous disease, please get treatment asap!!!  God bless all of you!!    Stacey

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I don't have the words to express my sadness. I am so sorry for you and your family.  My sincere condolences to,you,and yours.

Hugs and prayers, Lou Ann

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

So sad to hear this, Stacey.  I am so sorry your sister lost her battle with this devil and my best wishes and heartfelt condolences to you and to her husband and sons.  I hope you can find some peace in knowing that you did what you could for your sister.  

Chris

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1673
Joined: Jun 2015

Stacey, I'm so sorry to hear this. I hope you can find some peace knowing you were there every step of the way to support your sister. I'm sure that meant more to her than you will ever know. This darn cancer is so unpredictable. And we have lost way too many loved ones along the way. Take care of yourself and your family.

Love and Hugs,

Cindi

brissance's picture
brissance
Posts: 192
Joined: May 2016

So tragic.  Such a waste.  I hate cancer.  I hate it.

 

takingcontrol58
Posts: 259
Joined: Jan 2016

My sincerest condolences on the death of your sister. It is such a loss for someone that young.
I know you did your best to help her.  She is in God's hands now.

Takingcontrol58

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2772
Joined: Mar 2013

Stacey, I am so sorry to hear about your sister.  Thank you for taking the time in your grief to tell us what has happened and allowing us to cry with you for your loss.  My prayers are for you, your entire family, and especially for your brother-in-law and nephews.  

Diya
Posts: 93
Joined: Apr 2015

Stacey, i am so sorry to hear this. Sending lots of love and good wishes to you and your family for this difficult time. I agree. Cancer is horrible and it is very poorly managed by doctors. I dont think they are proactive enough in diagnosing it correctly or controlling it. I so cant wait for a real cure for this thing!! It is the worst epidemic ever!!

CheeseQueen57's picture
CheeseQueen57
Posts: 927
Joined: Feb 2016

I'm so sorry to hear about your sister and how she suffered. And so sorry for the family she left behind. Such a tragedy. The scary part of her story is that she was just stage 1A. One of my friends responded (a nurse by the way) when I told her about my uterine cancer by saying "it could be worse."  Your sister's story tells me that's not the case. 

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

I'm so sorry about the loss of your sister. This cancer is so unpredictable. My prayers are with you and your family.

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

Stacey, if only there were words that we could say to make you feel better. I hope you can heal a little bit every day knowing that she does not have any more pain or worry. Take care of yourself and know that you are always a part of our family. My deepest condolences, Kim

rcdeman
Posts: 257
Joined: Aug 2016

I am so sorry about your sister. I don't even know what to say. This is so frightening. I can only pray for you and your family.

MoeKay
Posts: 287
Joined: Feb 2004

Stacey, first please accept my deepest condolences on the death of your sister.  I wish it was possible to wipe away the grief you, your sister's husband, and your nephews continue to endure. 

Second, I feel compelled to speak to something in your message that has for many years been an extreme bone of contention for me about the way some medical professionals interact with their uterine cancer patients.  I was diagnosed with uterine cancer seventeen years ago.  My gynecologic oncologist was the absolute best both in his clincal skills and his patient communication skills, so I was fortunately not personally subject to the practice of which I complain.  Shortly after my diagnosis and treatment in 1999, I began to hear women with uterine cancer report that their doctors had made statements to them like those you state above were made to your sister, such as "if you're ever going to get cancer, this is the best one to have . . ."  I heard this type of statement many times, and it always makes my blood boil.  I always felt like these type of statements diminished the seriousness of the disease.  But what irked me even more was that while doctors continued to make these statements, my research on uterine cancer disclosed that both the incidence and mortality of endometrial continued to rise.  A recent study I posted on this forum confirmed that the increase in incidence and mortality for endometrial cancer continue.

While I don't think doctors who make these statements have bad intentions, I think there are much more appropriate ways to convey the fact that endometrial cancer is still a relatively curable disease in many cases (although obviously, given the increase in the mortality rate, not as curable as it was years ago).  I firmly believe that doctors need to be educated on how best to convey accurate information to their patients.  If a doctor were to tell me today that this was the "best cancer to have," I would say to him or her, "if that's the case, then why is it that endometrial cancer the only gynecologic malignancy with a rising incidence and mortality rate?"  I would be very interested in hearing his or her response.

Once again, I'm so very sorry for what you and your family have been through.

Maureen

 

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Stacey,

I'm sorry to hear about what your sister went through. I was very moved by her story and by your devotion to her. I don't think the grief of losing a sibling is always recognized for what it is. Our siblings are the only people who know us our entire lives. I hope you have the support you need at this time. Thank you for sharing her story.

janaes
Posts: 800
Joined: May 2016

This breaks my heart. I dont know why your sister was sent home but i hope you can eventually find peace.  Alow yourself to cry though and morn.  I had a brother in law who passed away at the age of thirty something tragically.  It took time for me and esspecially those closest to him to feel peace.   Be patent with yourself. 

lots of love and prayers for you

Janae

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

Stacey, you have all our hearts. Your sister is out of pain and sending you love from above. I understand your anger - everyone here does. I think this disease is harder on our loved ones than on us. A day will come when you remember only the good times - until then may God's comforting angels surround you. XOX

Billie

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