Living in Fear...My Plan when My Cancer Recurs

Background: 6 years ago, at age 40, I went for my first ever mammogram to learn that I have Breast Cancer . I quickly had a lumpectomy followed by 7 weeks of radiation (did not have time to think or feel really, was all rushed!). I’ve had a lot of reactions from the radiation as the years have gone by. Too many to list. But I just deal with them as they come.

 

I am luckily in remission now, but frequently wonder what would happen if my breast cancer was to come back- what would I do?

 

So, what is My Plan when it Recurs?

I have done a lot of research and have found out a lot of information I wish I had known 6 years ago. In short, I would take a more personalized approach to my cancer, and here is here is my plan:

First, since tissue is required to personalize a treatment, I would store my tumor tissue. No one knows that once you have your tumor taken out, it is not preserved in a manner to keep the cells alive. For that, I would call www.storemytumor.com

Second, I would do a genetic test to narrow down the list of drugs that may work on my tumor, and in parallel do a sensitivity assay that tests which drug, experimental drug or combination works best on my tumor. The results from these tests will help my oncologists pick the right drug or combination that we know has a higher chance of working on my tumor.

For Genetic Testing, see OncoDNA, FoundationOne, Caris and the likes… for Chemo Sensitivity, see Therapy Select, Rational Therapeutics, Mitra Biotech and the likes…

Third, I would seek immunotherapy. There are different kinds, but from what I read, cellular treatment option (vaccines and T-Cell treatments) have promising results and little side effects. They are experimental, but available in different countries. The idea behind them is to use elements in my tumor to activate my immune system to fight my cancer. Immunotherapy minimizes the chance of relapse. ** apparently this is one of the best tools to stay in remission longer, and to get rid of “residual cancer cells in the body that are always the cause of recurrence” **For immunotherapy, see Unifontis, IOZK, Ventus, and the likes…

In this day and age there is no reason to settle for standard of care when there are better or supplementary options out there. I want to find all these options and be ready!

 

Ladies, what else is out there? What else should I research?

 

Please share feedback on scientific stuff, not yoga, meditation, diet and feel good stuff. I drink enough wine to stay positive ;)

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First of all, let me say I pray your cancer never returns and you live to a ripe old age, never having to deal with this again. Knowledge is power for sure. In order to get the kind of treatment you talk of you will probably have to be near a major teaching cancer center. We are not. We are fighting pancreatic cancer. We see ads for immunotherapy and wonder why it’s not being offered. We went to Dana Farber Csncer Center in Boston. They have a whole department that treats and researches our kind of cancer. I asked him about immunity therapy. He said there isn’t any. I said but I have seen ads and articles about it. He said there isn’t any that are effective but for profit hospitals offer it but it’s not proven to be effective. I guess my lesson is just to beware. Dana Farber is a large research, teaching and treatment center. If anyone knew of a more effective treatment, they certainly would. Again I wish you wellness for many more years to come. We did get much needed information from them that has shaped our future treatment and the recommendation to forgo radiation. We were told for my husbands condition there is no proof that it’s benefitial and in fact some people do less well with radiation. I guess for now it can remain in the toolbox in case it is needed down the road.
avatar

Vital Info

Posts

March 21, 2017

Havertown, Pennsylvania 19083

December 17, 1970

Cancer Info

Breast Cancer

DCIS

January 31, 2011

Stage 1

Positive

Negative

No

No

na

na

It changed my whole life!!

Not to worry about the little things and to enjoy each day that you have.

They are already doing it.

massage, acupuncture, yoga

na

na

na

Gift certificates for massages or manicures. Love!

Lankenau Hospital

Only do what you can.

Only do what you can.

May 5, 2011

no

too many to list

Lumpectomy- 2/14/2011 Hysterectomy- 11/16/2011

na

na

na

na

na

na

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