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dixiegrrrrl

(60,011 posts)
Tue Sep 13, 2016, 09:31 PM Sep 2016

Got my gene test back that tells me if chemo will help or not.

There were 3 possible answers: ( this is a gene test for breast cancer)

1.. treatment benefits are very likely to outweigh risks of chemo side effects

2.. chemo side effects are very likely to outweigh treatment benefits

3.It’s unclear whether the benefits of chemotherapy outweigh the risks of side effects.

and damned if I did not get the 3rd result, leaving me with no clear answer.

In fact, the results said studies show that chemo and hormone treatment would result in a 13% chance of cancer recurrence
while hormone treatment alone would result in a 16% chance.

3% difference.

and no time left to dither, it has been 60 days since mastectomy ( they got all the known cancer)

So, long afternoon and evening of discussing with Mr. dixie, weighing pros and cons of our personal situation, etc.


14 replies = new reply since forum marked as read
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Got my gene test back that tells me if chemo will help or not. (Original Post) dixiegrrrrl Sep 2016 OP
Sending you hugs. Solly Mack Sep 2016 #1
I am going with the hormone if I can find one that is affordable. dixiegrrrrl Sep 2016 #2
Ohhhhhboy PennyK Sep 2016 #3
Since most women's breast cancers are estrogen positive, I have been looking at diet's impact dixiegrrrrl Sep 2016 #4
No clear choice, but a question to ask is what are the chances to get into remission if the ... slipslidingaway Sep 2016 #5
Couple of interesting issues about my decision, by the way. dixiegrrrrl Sep 2016 #6
Wishing I had taken notes last night ... slipslidingaway Sep 2016 #13
Increase your iodine intake... TeeYiYi Sep 2016 #7
Thank you.... dixiegrrrrl Sep 2016 #8
Thinking of you. TeeYiYi Sep 2016 #14
About sugar PennyK Sep 2016 #9
Wish I were one of those women.....sigh dixiegrrrrl Sep 2016 #10
I'm done with chemo PennyK Sep 2016 #11
ahhh...so you were HER2 Positive dixiegrrrrl Sep 2016 #12

dixiegrrrrl

(60,011 posts)
2. I am going with the hormone if I can find one that is affordable.
Tue Sep 13, 2016, 10:50 PM
Sep 2016

It is a cancer which feeds on estrogen, the hormones block estrogen production in the body, essentially forcing you into hellish menopause, even if you have already had menopause.
But none of the side effects are as bad or as potentially fatal as chemo.

PennyK

(2,312 posts)
3. Ohhhhhboy
Tue Sep 13, 2016, 11:38 PM
Sep 2016

Difficult decision for you. And yeah, a second menopause does NOT sound like fun. But I'd take it over chemo for sure.

slipslidingaway

(21,210 posts)
5. No clear choice, but a question to ask is what are the chances to get into remission if the ...
Wed Sep 14, 2016, 01:43 AM
Sep 2016

treatment does not work? Is it more difficult or less so? Also wonder how good of a predictor this test is in foretelling the spread of this cancer? My Mom was diagnosed in 1971 A Long Time AGO, and had a radical mastectomy at Columbia Presbyterian in NYC and 14 years later it returned in her bone, she passed in 1989.

But the good news is that her sister was diagnosed in 1990, just after the time of my Mom's passing and she had a different treatment, she will be, without checking the calendar, 90 next year and still going strong, she is one of five sisters and all are in their late 80's, all still plugging along on their own, well except for my Mom.

My husband has Acute Myeloid Leukemia, which began with MDS and relapsed in October 2014 at his 4 year checkup from his first transplant, his second transplant began on New Year's Eve 2014. When you have to go you have to go, there is no time to waste, he was admitted on Christmas Eve to begin chemo to wipe out the remainder of his cells, this after a month long hospital stay in October/November to kill off the leukemia. His second transplant was a fractionated experimental transplant , which means you receive about 60% of the cells on the first day and then have two other days in short sequence when you receive the balance of the donated/transplanted cells. The thought is to send some cells in to pave the way and then send in reinforcements ... we'll see! All is well and recent blood tests show he is donor

Anyway the reason I bring this up is that they have made great strides and continue to move forward in this battle against cancer, my Aunt was on Herceptin, it was a new drug not available to my Mom at the time just a year or so prior.

They are now doing a combo of half matched cells (haplo from siblings/children) in addition to cords/multiple cords to hopefully cure blood cancers, nothing we ever heard about 5 years earlier when my husband had his first matched sibling transplant.

In conclusion I will say ask the question 'what are my chances to get into remission' after this treatment? You want to go for the best treatment and not preclude any further treatment, science can a long way, we just need to be on the receiving end.

We're stepping on a ladder, we just want a chance to reach the next rung, step by step!

Wishing you well on a difficult journey, Do not be shy, but Do ask questions.



dixiegrrrrl

(60,011 posts)
6. Couple of interesting issues about my decision, by the way.
Wed Sep 14, 2016, 02:31 PM
Sep 2016

We all hear about breast cancer, and in the last 6 -10 years I have actually seen these headlines...
" 1 out of 5 women will get breast cancer"
followed a few years later by
"1 out of 3 women will get breast cancer"
followed later by
"1 out of 2 women will get breast cancer".

Something is going on.
Fukishima?
All the chemicals in most processed food, and in the canned food linings?

2nd thing:
There are 6 or more types of breast cancer, that and the age of the woman ( and even men) really can effect outcomes.
younger pre-menopausal women have the worst remission rate no matter what treatment. ( most breast cancers are estrogen related)
So when you hear of outcome studies, there is rarely a mention of age of women and type of breast cancer.

So..I am choosing hormone therapy to shut down estrogen in my body.
My cancer is very rare ( less than 3% so far of women get it) and very slow growing, slow spreading.
If it comes back, there will still be a chance of chemo then.
but I am 71 and the chances of surviving chemo side effects has to be considered.

Hormone therapy basically is like intense menopause, few side effects, and those are easily addressed.
Quality of life is a huge issue for me.

slipslidingaway

(21,210 posts)
13. Wishing I had taken notes last night ...
Sat Sep 17, 2016, 01:15 AM
Sep 2016

attended a local seminar about current cancer treatments. A statement caught my attention, most of us have one or more cancers (possibly several) in our body when we die, but it is all about how our immune system reacts and then how the cancer responds and then outsmarts our own immune system, that is when we run into trouble (my words)

Going along with what is going on, maybe we are taxing our immune systems too much, and it can be from environmental issues to not getting up and moving, more stress, less laughter etc. it could all play a part. They are looking more towards common denominators across a wide spectrum of cancers, one trial drug they spoke of had a positive effect across 20 different types of cancer. In some instances immunotherapy is the preferred first line treatment, foregoing traditional chemo.

All of this science is somewhat beyond my comprehension, but after relapsing in late 2014 with acute myeloid leukemia and another stem cell transplant, my husband is now on a drug which is FDA approved for liver, kidney and thyroid cancer. It is being used in an 'investigational' setting as it is already approved for other cancers, but has shown some promise against a certain gene mutation. He'll go off this drug in December, so a little concerned, has this helped, what happens when he stops this drug. They spoke of these inhibitor drugs last night, but again I cannot relate the science adequately.

All we can do is try and be informed 'consumers' of the latest advances and make the best of the situation ... get moving, laugh, reduce stress ... well that idea could have it's own comedy show! Life or death situation plus mounting bills, what could be less stressful

Speaking of studies there was some discussion of prostrate cancer, one researcher stated that was an easier cancer to study as there is so much information out there on that particular cancer, a high PSA test result should not always result in a biopsy, there are other blood tests (he mentioned five) that can be done to guide that decision. Most men die with prostrate cancer, the cancer was not what got them in the end.

A slow growing and slow spreading, while not the most pleasant revelation to hear sounds OK. Studies are proposed by those who have an interest in a particular area, one researcher just received a large grant for lung cancer, panel was 50% by gender. I do believe that as more women enter the research field, studies will be driven to cancers that more commonly affect women.

Also stated that lung cancer is still high on the list for poor outcomes, unfortunately they have not advanced significantly, believe only 2% overall survival rate over 40 years, death rate is higher than breast cancer, but there are new screening tools that can detect lung cancer earlier, CT scans for ex-smokers in addition to biomarkers in the blood.

Be vigilant, but do not drive yourself crazy, move and ... Laugh.









PennyK

(2,312 posts)
9. About sugar
Wed Sep 14, 2016, 09:42 PM
Sep 2016

I've been following a low-carb diet for most of my life. Although most people might not think I have a healthy diet, I HAVE avoided sugar far more than the average person...I even buy low sugar ketchup and make many things from scratch just to avoid sugar and carbs that turn to sugar in your system, and I got cancer anyway.
And these days, recovering from chemo, I have been eating whatever the heck I want to. I've lost about 15 pounds, and many things still taste off to me, so I eat what tastes good, and not that much (I seem to get full quickly). I'm sure there will come a day where I have to start cutting back, but for now, I feel like I deserve to treat myself!
There are so many variables in the human body that I don't think we can predict with much certainty who will get cancer, or heart disease, or diabetes.

Oh! My oncologist said on Monday that one in EIGHT women get breast cancer. I said, well, because of me, there are seven women who are okay LOL!

dixiegrrrrl

(60,011 posts)
10. Wish I were one of those women.....sigh
Wed Sep 14, 2016, 10:27 PM
Sep 2016

Thanks for the info about sugar.

today I read of studies associating low thyroid with breast cancer, and thought about the past 5 years on my annual lab tests which show my levels decreasing over time.
Which is consistent with aging, true.
but.....I wonder.

How is the chemo coming along for you? How long will you be on it?

PennyK

(2,312 posts)
11. I'm done with chemo
Wed Sep 14, 2016, 11:18 PM
Sep 2016

Had the one mastectomy, now I'm getting ready to do radiation and start my year of Herceptin (like a mini-chemo). Then I can get my port removed, go off blood thinner, and get my reconstruction. I'm feeling good right now, enjoying life, except for this crazy breathing issue that popped up (waiting for a full diagnosis), but we'll see how the treatments to come are.
Talked to both daughters this week; they are going to come for Thanksgiving! I haven't seen them since last year, and this will be great.

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