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My sister was just diagnosed.

Empath21
Posts: 2
Joined: Jan 2018

My youngest sister was just diagnosed with invasive adenocarcinoma. She is a very private person, and I’m sure talking about it makes it real, so I don’t know a lot. I don’t think she knows a lot. Her diagnosis came after a cold knife conization, and initially the gyn oncologist said she expected my sister would be able to have a hysterectomy to manage it. We were waiting on results to decide simple or radical, with the doc saying she expected radical and that they’d go ahead and take some lymph nodes. Instead my sister got the call that the oncologist sees a “spot that concerns her,” and she wants my sister to get a CT scan. They have not officially staged it yet  

The oncologist said something about mostly 1 to 3, but one area of 3 to 6. At the moment, I thought she was speaking of where the lesion(s) were found on the cervix, but I realize now she may have been talking size of tumor. She (the doc) was very positive after the conization. She thanked my sister being on top of her annual Pap smears so as to catch this early. Last year, things showed up clean. I’m reading that endocervical adenocarcinoma can “hide,” so maybe it has been there more than a year? But my sister has a two year old, literally just turned two, and there were no issues at his birth, so we know it’s been growing less than two years. She’s a super healthy (just ran a mini-marathon), happy, well adjusted woman. It may be of bearing that our grandmother had cervical cancer  We don’t have records on the type, but she survived it and went on with her life. I understand this cancer is HPV related, so maybe not.

I’ve offered to watch kiddos, provide transportation, and to run errands. I’ve told her I’m here if she wants to talk, or not talk. I’ve also offered to go with she and her husband to doctor visits, to be another set of ears, as a scribe, and to introduce questions. (I haven’t really slept since the diagnosis. I realize reading all night on the internet may be a bad idea, but I am having difficulty stopping myself. It’s like I’m bargaining with the information I’m reading.) I’m trying to be as normal as possible for her. And things are not exactly normal right now. 

My questions are:

1) What are the questions you recommend she ask at her next doctor appointment this week?

2) Is this the time for a second opinion? Whom in the US would you recommend? (We are in Kentucky, so Cleveland Clinic is driveable. And I would cash in my retirement to get her the best care possible, so if it’s someplace on the other side of the country, I’d like to know).

And 3) what does she need from me right now? I’m asking that directly - and we are a very close knit family of lots of daughters. I’m aware that our - her sisters’ needs to be present, to help, to know, could overwhelm at a time when her and her husband‘s energy needs to be directed toward her healing. Is the idea of a point person (one sister) to report to the family (and further to a point person for her large group of friends) a good idea? I am worrying, too, about how this will affect our parents, and wonder how to support them.   

Any wisdom is deeply appreciated. Thank you. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2547
Joined: Mar 2013

Empath, let me say how lucky some of us are to have sisters like you!  My twin sister went and read a lot of things and cried and cried and I asked her "what would you do?"  She said she would take it a step at a time and I told that is exactly what I was doing.

I am happy to hear she is working with a gynecologic oncologist.  That is THE specialist she needs at this time.  It sounds like she might be getting things a little confused so you are trying to sort it out - totally understandable - there is a lot coming at you and language you are not familiar with.  You said you were a very close family, so it would be nice it she would just let you sit there and write everything you hear.  

They usually stage a cancer after surgery and it is not uncommon to have a CT in advance of any surgery, and the doctor is right, it was great your sister HAS been staying up on her PAP and has been taking care of herself.  So let me see if I can give you some ideas re: your questions.

1) What are the questions you recommend she ask at her next doctor appointment this week?

What is the "plan"? What kind of tests are in line to determine what is going to happen?  How long will that take?  When do you get results?  What is the follow up with the 'plan' - is it chemo? radiation? (That they are talking about looking at lymph nodes may mean they want to make sure it hasn't spread - they can take them regardless of what they see - it can cause lymphodemia so is that something to look out for?)  

"Stage" is how far it has spread, "Grade" is how aggressive it is -- 1 is low and 3 is aggressive.  There are only 3 grades - I know that because I asked how high it goes when I was told is was a Grade 3 :) 

2) Is this the time for a second opinion? Whom in the US would you recommend? 

You said she is working with a gynecologic oncologist - which as I said is great.  While the "standard of care" is probably sort of set, a gyn onc should be reading the journals and seeing what new is out there or being tested PLUS they specialize in gyn cancers.  

As for where?  I think many of us have been lucky outside of large cancer centers as well - the Cleveland Clinics, MD Anderson, Moffit, Dana Farber, etc...but she can ask.  You know it yourself, you have to love your doctor.  Some people think you should get a second opinion, I had people say it to me.  I will tell you cancer doesn't grow as fast as you think so there IS time if that is something she wants to do.  Insurance will usually cover a second opinion as well.

3) what does she need from me right now? 

You are so on point of what she needs.  You OFFER.  Give her the chance to make the decisions for herself.  Offer her choices - what is it she would like you to do for her?  Does she want you to look something up for her?   She is overwhelmed right now.  Just continue to be there for her. 

None of us fight alone.  We all need the love and support of our family and friends.  She is very lucky to have you and please let us know how she does.

Empath21
Posts: 2
Joined: Jan 2018

Your response is helpful, meaningful and wise. I will just keep on keeping on, we all will, in whatever way she deems most helpful. All my best to you! ❤️

Northwoodsgirl
Posts: 506
Joined: Oct 2009

Thank you for being such a caring sister ! If your sister is already under the care of Gyn- Oncologist she is in a good spot. There are many excellent Women’s Cancer Centers within  larger academic teaching hospitals like the Cleveland Clinic. Uterine Cancer has standard treatment protocols as developed by a consortium of gyn- oncologist. Those surgery, chemo and radiation protocols are researched, developed and posted on the Internet by the NCCN. Your sister should seek a second opinion if she isn’t sure what kind of surgey would be best ( laparoscopic robotic surgery or “open” abdominal surgery.) Insurance companies typically pay for second opinions ( call Member Services phone number on the back of her insurance card and ask if second opinions are covered and in Network versus out of network coverage. Be prepared if your sister doesn’t want people to know about her cancer at this point. Having cancer and the treatment period is a long intensive experience. Believe me at first everyone rallys around but then when the shock wears off other people may forget that your sister is going to be receiving intensive treatment for a minimum of 6 months. In terms of offering to do something for her-some people like me would never take you up on an offer because I am use to being independent. If someone however just took the iniative that would be appreciated.  

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