LOSE the Great News! Red Banner!

It's true that many of the posts are widely read and not all generate responses. And it's sad when this occurs. But I think this board is better in that regard than some of the other boards on CSN that have less participation. Usually someone here responds, even if the question or comment is outside that person's experience.

But perhaps some of those who are only readers feel as I did initially – that I wouldn't be able to offer anything unique or helpful. And I only joined when, as you say, I decided to commit to being an active participant. Not everyone wants to make that commitment or, if they or a loved one are in the throes of treatment, feel emotionally strong enough to participate.

I actually find it more frustrating when someone joins, posts once and receives a lot of responses, only for that person to never post again. Frankly, I would have preferred for that person to just read the posts already here, since it can take time to respond to a post, especially when it's a difficult topic.

I'm appreciative that while members can disagree about a subject, as on this topic, the discussions here are usually respectful about our differences. That's not always the case elsewhere on other social media forums and why I value this site.

While I'll miss seeing your engaging personal photo, I do think we all need to be comfortable with the amount of information that we disclose here.

Welcome to our community of cancer survivors, families and friends! Our lives have been affected by cancer in ways only those of us who have “been there” can truly understand. We invite you to join today to fully experience all that the Cancer Survivors Network (CSN) has to offer.

This site is completely non-commercial and provides a private, secure way to find and communicate with others who share your interests and experiences. In order to protect your privacy, you may remain anonymous in the CSN community if you wish. You control all personal identifiers.

The purpose of the Cancer Survivors Network is peer support. Site content is contributed by its members. Their contributions reflect their own personal views, feelings, and experiences. Content is not endorsed by the American Cancer Society nor should it be accepted as credible medical information. Users are encouraged to refer to the American Cancer Society website at http://cancer.org or call its National Cancer Information Center at 1.800.227.2345 for credible medical information. Users should always consult qualified healthcare providers with questions and concerns about their medical condition.

I think one of the good things about this discussion board is that you can come when you are having difficult days too.   I hope your day is better!

So sorry to hear about your friend's diagnosis. I have posted here when I've had a bad day or bad finding and have found the responses adult and soothing. I too have been on the FB ate for EC--I have the same brand you do only much more advanced--and can't totally relate because most of those women are stage 1. But the fear of the diagnosis and the unknown is the same. You are a great empathized with others. If you don't want to bare your soul on a public site use the personal messaging. I have found it helpful.

My diagnosis has been tough for those around me because I was always the rock. I was the one who never got sick or had marital problems like others in my family; I am the oldest of a large-ish family and have the characteristics that go with that position. I find it very difficult to be the object of sympathy and what I perceive to be smothering care. I have a hard time talking to my brother because he breaks down all the time but I have got better at it. This damn disease is hard on everyone.

You will be there with your friend because you love her. You will amaze yourself but it will be tough. I know you be what helps her through her tough days.

Much love and hugs,

Other Deb

I'm sorry about your friend's recent breast cancer diagnosis, Deb.  I think hearing news like this about a good friend may be more traumatic than hearing it about ourselves.  I can definitely relate.  I've mentioned my childhood friend on this board a few times.  We've been friends for about 65 years.  She called me one morning and broke the news that she had just been diagnosed with endometrial cancer and was scheduled for surgery a few days later.  Coincidentally, at the time of her call, I was wearing a 24-hour blood pressure monitor.  I don't have to tell you what kind of numbers the monitor recorded during that conversation!  Turns out that after surgery, she was diagnosed with stage 4, grade 3, endometrioid adenocarcinoma.  When her daughter called me right after the surgery, I was glad that I wasn't wearing the BP monitor then, or I would have likely caused the thing to explode. 

However, it will be 5 years in April since my friend's diagnosis and she's currently doing unbelievably well. Yes, she's been through a lot over the years, but she sent me a text from the infusion room on Thursday, telling me that her latest CT scan showed no evidence of disease.  That's two in a row now.  She is currently on Keytruda monotherapy, because she couldn't tolerate the Lenvima side effects.  Her oncologist told her that the Keytruda doesn't work for everyone and on some people it's miraculous; and that she's one of the lucky ones for whom it's working like a charm!  Her oncologist's plan is to keep her on Keytruda for another 3 years.  My point in telling you this is that there are a lot of options for your friend that were not even on the horizon a few years ago.  I know Keytruda is also used for some aggressive breast cancers in combination with chemo.  I know a woman with triple negative BC who is doing quite well on that combo several years after her diagnosis. 

Your friend is lucky to have you and all the support I know you will be giving her!

My wish list.  I was/still am a member of a breast cancer info/forum website and it is wonderful to navgigate. 

If you create a post, you get a mnotification whne there are any repelies.

It's just way more user friendly but I will take what they give us as a means of communicating with each other. 

I do not like that on this site that posts can show up in google searches depending on ketwords. 

So can someone clarify or direct me to privacy options on this site?  

Thanks.