HER2+

Barbiecorn, I am not a long-term survivor (yet!). I am HER+++ and had a bilateral mastectomy in January 2015 (IDC, 4cm tumor one breast, stage llA, grade 3, 20%ER+, PR-, clear sentinel, clear PET) and declined chemo/Herceptin, rads were not indicated for me. I don't have any Big Pharma/oncology conspiracy beliefs. I did a whole lot of reading on this site, read endless pubmed articles and any other scientifically vetted studies I could find that pertained to me. I consulted with three oncologists and found them to be straightforward and helpful. The thing that had the biggest impact on me were the discussions on this board. There is a lot of reason to hope that there will be breakthroughs in the coming years, particularly with targeted biologics, but I could not see myself undertaking the treatments as they stand now, and the people on this site who have shared their experiences have my respect and admiration.

We all have to make a very personal calculation about what we are willing to do, and go with that. I am in my mid-fifties, my child is launched and is a member of a large and loving family. I am single at this point, and felt I could make a decision solely based on my own desires. If younger or the mother of minor children, I may have chosen a different path, but a year of active treatment and the related SEs (though experience is of course, very variable) for an uncertain outcome was not something I wished to do. My concern was going through all of that and recurring anyway, and losing precious "healthy" time at a stage in life where other health problems are likely to crop up. My surgery and post op experiences convinced me that it was not the road for me. At this point in time, I am only seeing my PCP, and will simply monitor things for the time being.

[And a note to those reading: please, no lessons on DFS stats for early stage HER2 BC treatment--have researched it pretty exhaustively and am a big fan of SpecialK. I don't want this post to devolve into a statistics tutorial, it's not what it is about. I respect and understand your choices.]

As you have found, it can be isolating, particularly on a website devoted primarily to the current standard of care. I will say that your being symptom free at 4 years out is excellent--HER2 is known to recur within the first few years, and to be so far out is a wonderful thing; it is possible that your surgery took care of your cancer. None of us get any guarantees. I don't doubt that there are many people out there who opted out of treatment, but a website such as this is not likely where they hang out. And where, if at all, people who decline chemo fit into the survival stats is anyone's guess. Despite my decisions, I remain very interested in treatments, the science involved, breast cancer activism and the struggles and triumphs of the people on this board. I think that some alternative/complementary treatments are interesting (and that the medical establishment in general gives short shrift to the value of nutrition and the impact of stress), but the information is so diffuse and variable that I have not found it to be of much help. So I keep reading--this place is a great source of information. Good luck to you and all of us.

march 15 will be 5 years since the first sign that the cyst had gone bad, really a year or 6 months previous, or more or 50 years since the birth control pills made it, without any conventional, still doing homeopathy, castor oil packs once a week for 45 minutes, essential oils........not getting better, worse then better then worse but I'm still ambulatory. will be 78 in may

no. nothing conventional including diagnosis. pretty obvious though, pretty damn hideous. glad no one so far has seen it but me. I have to look at it when dealing with changes, changing dressings etc

thank you Barbiecon, I have very similar inclination and struggling to understand rational for proposed therapy given the major sideeffect . Did you consider doing hercipton or radiation alone without chemo ? If not where did you start with alternative treatments? And how did you monitor to insure recurrence free ( test etc)?