Wife Afraid of Recurrence

Geroge_G

Hi Everyone,

My name is George and I am new to this forum. My wife has just hit the 5 year mark of being in remission from TNBC, but she is still not happy. She does not believe that she is cured and is still in great fear of recurrence. At her doctor's appointment last week, her oncologist stated that she now has less than a 5% chance of the cancer recurring, and that with TNBC, recurrence is rare after 5 years. However my wife does not believe that because she has read of other women TNBC relapsing after more than 10 years of being in remission. Her cncologist knows how scared she is and my wife feels that her doctor only told her this to quell her fears. I don't know if that is the case or not.

How can I help my wife come out of this sadness? I have told her to stay off of the internet because of all the scary info there, and that she will be fine, but she does not believe me nor her doctor. What can I do to help her get over this sadness?

J9W

Hi George,  I think she'll always have the fear - but maybe there is a way she can learn to live with the fear instead of letting the fear rule her life. Maybe someone with TNBC will post soon. I was dx'd with DCIS in 2009 and I fear it, or any other kind of cancer,  returning. I go tomorrow for my yearly mammo and have been getting nervous just thinking about what may be so I surely understand where she is coming from. I have no words of advice for you but just wanted you to know that I think we are all in the same boat. Most times though, I just put the fearful thoughts out of my head and just keep on trucking.  J9

Luah

George, the Internet can be scary but there are very credible sources of information there too. For example, this article http://www.ascopost.com/issues/december-15-2012/current-perspectives-on-triple-negative-breast-cancers.aspx by the leading researcher in TNBC cites disease free survival of 85% five years out from stage 1. Further, it is well-accepted in the medical community, based on evidence, that TN tends to relapse early; at 3-5 years, the rate of recurrence steadily declines, and by 8 years out it is exceedingly rare for TN to recur. Not saying it doesn't happen, but it is rare, and no doubt your wife hears of these cases much more than the thousands and thousands of TN women who go on with their healthy lives. I am 4 years out and was recently told by a genetics specialist at my cancer center that my risk of recurrence to age 80 is 8%.

There is also good information at http://www.tnbcfoundation.org/.

All that said, most cancer survivors always fear the other shoe dropping; it lessens over time, but it never goes away. That is one of the lasting "side effects" of cancer, and we all have to accept it.  If your wife is very fearful and unbearably sad, to the point that it is interfering with her enjoyment of life, I would strongly suggest she talk with her doctor and oncologist about her fears, and maybe be referred for counselling/anxiety therapy. I wish you both well. 

Geroge_G

Thanks Luah, I really appreciate you providing me with this information. I will show this article to my wife. She is just so confused by this. She was told 2 different things from her doctors. Her chemo oncologist stated that with triple negative breast recurrence is rare after 5 years, yet her radiation oncologist stated that is not true, and that women with TNBC still develope recurrences after 5 years just as women with hormonal positive cancer does. She is sad, confused and doesn't know what to believe. I will be talking with her about receiving counseling as well. I'm really hoping that counseling will help her.

RebzAmy

Geroge_G

I'm not triple negative but still feel in a similar boat/situation to your wife.  There is a brilliant article written by  Dr Peter Harvey a consultant clinical psychologist in England called "After The Treatment Finishes, Then What?" I can't seem to paste it but if you Google him and the article you'll find it - it's really helpful. Nothing takes away the fear and I find reading this article very helpful. I've really had my ups and downs so I really sympathise with your wife.  The support you are giving your wife is invaluable.  Hope this helps.

Geroge_G

Thanks RebzAmy.  I'm sorry you are having to deal with this disease. I really wish that there was a cure for this awful disease.

Luah

George, I'm sorry your wife is getting different stories from different doctors. That is so very confusing and stressful! But it's also not surprising really, because some docs keep up on the latest research and some don't. And sometimes the research is contradictory. From all that I've read, however, the bulk of evidence shows TN tends to recur early (18 mos to 3 years) and then recurrences start declining, and quite sharply; 8-10 years out, it is less likely to recur than ER+... this makes sense because it's such a high-grade aggressive cancer, so any spread shows up pretty early (and we don't get 5 years of hormone treatments to keep it at bay.) The rad onc is also right though, in that it CAN recur later - there are no guarantees in life.  

CareBear1226

George, you are a very caring husband. I am in the same boat as your wife. It's really tuff on us. I keep hearing people say don't worry about it, you are going to be fine. We are talking about our life....we are afraid and do not want to die. Just support her the best way you know how and be there for her.