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Posted on: Nov 6, 2012 10:03PM
Had DCIS 15 years ago, when I had a lumpectomy and radiation.
Then this past August, got diagnosed with DCIS (same breast) with micro-invasions. Due to radiation 15 years ago, I went the mastectomy route this time.
Sentinel node biopsy was done (I think 3 lymph nodes were tested) and they were clear.
Pathology showed clear margins, sentinel node clear, then ER/PR- HER2+. The HER2 was grade 3.
The micro-invasions were spread out along the milk duct. Each "invasion" was very small, it was described to me that the invasive portions looked like pearls strung out on a necklace. So, looked one way, the invasive portions were so small and spread out, I didn't "qualify" for Herceptin. Looked another way, if you added up the total length of the spread of the invasions, it's 1.1cm, which they consider long enough to be of concern and to "qualify" me for chemo and herceptin.
I'm not happy about this at all.
So I have a few questions:
1) Does anyone have any other recommendations as alternatives to chemo and herceptin?
2) I have read a few posts about just doing herceptin with no chemo. I thought this was impossible. What stats were you given re taking herceptin by itself with no chemo? I live in Canada - are any of you herceptin-but-no-chemo folks in Canada?
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Nov 7, 2012 06:35PM 1Athena1 wrote:
I don't think anyone here knows of treatments that could be called alternatives to chemo/Herceptin -as in "substitute" treatments. The only options are to either forgo both, forgo one or the other. In other words, take a completely different track. But I don't know of treatmnents that work the same way but are alternatives.
I recommend that you get a second opinion from an onc where you are if you have questions about options. The best thing is to consider options that are directly presented to you based on your history and preferences. It's not a good idea to go on what others did, as they may have different characteristics.
There is a forum here for people who have micro-invasive DCIS that is Her2-pos - in case you are interested: http://community.breastcancer.org/forum/111
Best of luck to you.
Nov 7, 2012 11:16PM Albertan wrote:
thanks for the responses. One thing that got mentioned today by another doctor I saw was the benefit of exercise. She said that there is research connecting no recurrance and doing 45 minutes of exercise, 6 days per week. If I heard her right, I improved my chance of no recurrance as much by doing the exercise as by doing chemo and herceptin. Seems too good to be true. So that's I guess what I was wondering when I was hoping for an alternative to chemo and herceptin.
I also found out that in Canada, I can't get herceptin on it's own - it has to go with chemo - something to do with Federal Govt. rules??
Nov 10, 2012 08:57PM sweetbean wrote:
No, Albertan, I don't think that is true. Exercise is very helpful and a "must-do" for anyone trying an integratetive or alternative approach to cancer, but I wouldn't think of it as a replacement for chemo.
Nov 10, 2012 09:11PM 208sandy wrote:
Albertan: it can't be a federal government rule because health care is a provincial concern however I am pretty sure you won't be able to get herceptin without chemo because the protocol is chemo and herceptin - try checking with Princess Margaret in Toronto - they are pretty cutting edge and you might get an answer there (if there is one). As for exercise instead of chemo - sorry but that's not going to fly - wish it could.
Nov 25, 2012 09:42AM Lily55 wrote:
I refused chemo and did sono photodynamic therapy instead - this was done in the UK - it is a systemic therapy and visible reduced two lumps I was left with post op............since having this treatment if I am ill I now get a fever whereas for years I am someone who does not get a fever to fight an infection and low core temperature has been implicated in the likelihood of getting cancer. There are obeservational studies supporting this as a treatment.
I am taking exercise route also and did throughout all my treatment - Zumba as well
Dec 1, 2012 03:42PM h39 wrote:
<!--StartFragment -->I am so new to this forum, I should probably mind my own business.
Alas, since I am in a similar situation to Albertan, I thought you might forgive me for adding my two cents worth.
I don't know how old you are, because I do feel that makes a difference in the overall outlook, so I will just share my own experience.
I am 73 years old with advanced Emphysema, I had a left mastectomy in October and it was ER/PR- HER2+, with one positive lymph node.
The chemotherapy combined with Herceptin that was offered to me would have been a sure fire way of destroying what was left of my lungs.
So my choice was to forgo any kind of treatment, with the exception of making improvements to my diet and getting back to my daily workouts which are an absolute must for my Emphysema anyway.
My reason for telling you all this, is that I feel that treatment (in some cases at least) is a very personal decision and it would be nice if we could have those around us just support the very personal choices we make.
wishing you all the very best with whatever choice you make
Dec 5, 2012 07:15PM ahdjdbcjdjdbkf wrote:
There is a tool you can find by googling called PREDICT. It gives outcome statistics on various treatment combinations including Herceptin without chemo.
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