HER2+

barbiecorn

Any long term survival with HER2+ and no chemo or Herceptin?

gracie22

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.

barbiecorn

Thank you Gracie for responding....I sent you a personal message...I too did not do conventional for the same reasons....we need support only from any members on this site...when I first started posting on this site, there were many fearful angry women who were not very receptive to my choice.

abigail48

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

barbiecorn

78 in May - that is great...did you have surgery?

abigail48

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

barbiecorn

Okay five years is great!!

barbiecorn

Yes my alternative doctor told me with HER2++ it can come back in two years...so I feel blessed it is going to be four years in February....I just keep praying for more time!!!!

Topaz15

Recently diagnosed and just had my surgery to remove the lump. Very confused over the adjuvant treatment rational especially when I'm told that the cancer was removed. Reluctant to go down chemo route when benifit can not be demonstrated for early stage cancer. How did you decide to opt out of treatments altogether ? Did you try any alternative natural remedies instead

barbiecorn

Yes I did alternative...many supplements, juicing, etc...chemo helps in only 3 percent of cancer patients...not high enough for me to go through it...too many side effects, and can actually cause cancer...I too was told I was cancer free...they wanted to do chemo and herceptin to avoid a reoccurance...I refused..it will be four years on Feb. 1st...I pray a lot too.

marijen

barbiecorn - where did you get that 3% information on chemo? pls... and is it for HER2+ or everyone? thanks.

Topaz15

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)?

barbiecorn

If you google and seek and search, you will see that chemo helps in only 3 percent of cancers...I was not a candidate for radiation as there was nothing to radiate...I was cancer free after the bilateral mascectomy...only chemo was offered and herceptin for HER2+ - herceptin causes heart issues and with my family history, I declined it. I went on sites that did alternative treatments only for cancer and through reading many many books on the subject, I did alternative supplements...also I did go to an alt. M.D. at the beginning to get the information on alternative treatments..

barbiecorn

There are other studies done besides that one...one done in Canada also...whenever you ask the oncologist the percentage that chemo helps with cancer, they change the subject...I wonder why..I know chemo helps testicle cancer by 35%...some other cancers I believe lymphomas are in a higher percentage but breast is in the 3% range...I did have surgery...I am not trying to persuade anyone not to do chemo....it doesn't matter to me who does it or who doesn't do it...this is an alternative site....I am taking the alternative route and I merely posted here to determine if there were any long term HER 2 positives that did not do conventional and are still cancer free....

DaveSchnell

Thank you. Very informative

barbiecorn

Kayb - you are very lucky to have found an oncologist who does not duck the question. You obviously did chemo.....

but again I started this discussion - my question is: IS THERE ANYONE WITH HER2 POSITIVE BREAST CANCER WHO HAS NOT HAD CANCER RETURN AFTER DOING ONLY ALTERNATIVE TREATMENTS ...THAT IS MY QUESTION...I don't think you should be responding to my initial question if you did chemo....please only those who can answer my question respond....thank you.

Stephmoen

personally I think all you have to do is look at her 2 positive statistics before and after herceptin there's your answer

barbiecorn

I am going to do just that....thank you.