Stacey's Cancer Blog

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.

What I wish my doctor had told me!!!

I was diagnosed with breast cancer 6 years ago. I was in shock. I immediately had surgery to remove the cancer followed by radiation. I have been clear ever since but have had many side effects from the radiation and the surgery as well. I am still getting surgeries and seeing doctors- years later. Ever since my diagnosis I have been an advocate for early detection as that is key. When I see people posting on FB and such that they have family members who have cancer and what should they do, I contact them and try to help. What I have found out is that radiation and chemo is the standard of care and many people out there have done that and it didn't work for them- multiple times. I have since done research and found that if you have cancer- you want to be able to store your tumor alive so that you can have other diagnostics done to better your chances of remission and survival. Even though I am fine now, you don't know what the future holds in store. I wish I'd known about this 6 years ago as I totally would have stored my tumor. It's like storing your child's cord blood- you never know if you are going to need it but if you do- it's there. Same thing with you tumor tissue! And you need to store it alive so that it can be used to help you- if it is stored in paraffin it is dead and will be of no use to you- must be cryopreserved so that you can use it down the road. I highly recommend anyone that has cancer to look into this option as it could save your life!

Sandra threw a punch at your cancer.
Sandra sent you a prayer.
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I also am doing a TON of research after having chemo and radiation. I am looking at other ways to help myself. Although I had not negative effects from either, I believe there has to be a better way. This is a good idea!!!! My problem is I am stage 3B and surgery was not an option. But it is people like you who need to help others. I would have never known!!! But I do for the future for myself and others!!! Thank you!
Kristina,

So here is even more information that I found. Maybe you can find it helpful. Let me know if you want to chat more about it. There is a company that provides these options once you store your tumor with them.

We all know that the standard of care is simply not enough and if the cancer is not contained early on and actively managed, then it will most likely recur and progress. 

So I did some more research and this is what I found... personalized strategies that lead to better treatment results and longer time in remission: 

FOR NEWLY DIAGNOSED PATIENT: 

1) Chemo sensitivity testing: Chemo-sensitivity testing determines the most effective drug or combination for the patient. It is not routinely done however because it requires viable tumor tissue and because it is an out of pocket expense. Pursuing this test upfront will set the patient up on the right treatment course from day one and avoid unnecessary toxicity with no benefit. 

2) Personalized cancer vaccine: A type of immunotherapy that awakens the patient's own immune system actively fight the cancer, helping to reduce chances of recurrence. In a perfect world, every patient should get vaccinated, but we are not there yet. This treatment is not routinely done because it requires viable tumor tissue, and because it requires a complex infrastructure to prepare and administer. It also has little or no side effects (good quality of life). Pursuing a personalize vaccine is a proactive way of fighting cancer, can extend time in remission, and reduce chances of recurrence. 

FOR RECURRENCE OR ADVANCED PATIENT: 

3) Genetic sequencing: identifies unique mutations on your tumor, and matches those to drugs designed to target mutations expressed on the tumor, thus narrowing down a list of about a 100+ targeted drugs to about 10. This test is often ordered in the USA and requires paraffin (dead) tumor tissue. Pursuing this test upfront will identify targeted drugs your oncologist can use to treat your cancer. 

4) Drug screening test: this test screens for the widest range of chemotherapeutic agents, targeted drugs and experimental drugs. This test is not routinely done because it requires viable tumor tissue and because it is an out of pocket expense. Pursuing this test upfront will help you identify a chemo, a targeted drug, or an experimental drug from a wider range of options, and confirm that the drug works. 

5) Personalized T-cells Therapy: A form of Immunotherapy that recruits more soldiers to the battle, by multiplying the part of the immune system that already recognizes the cancer. This treatment is not routinely done because it requires viable tumor tissue, and because it requires a complex infrastructure to prepare and administer. Pursuing T-cell therapy boosts the immune system to fight cancer in parallel to other treatments you are on and reduce chances of recurrence. 

BOTTOM LINE: Personalized treatments start with having access to the viable tumor, BUT tumors are NOT preserved alive by the hospitals and are routinely discarded. 
Wish I would have known I can store as well. I have a lot of issues still from the treatment and ask myself daily when will it end and was told this is the new normal. Ugh I wont complain and thank God I'm still here but wonder why and wonder if I would have not did treatment if I would still be here.
Sandra, I am so sorry you are having lots of issues as well. And yes, if we all knew we could store our tissue and that it would help us with our treatment and survival I am sure we would have all done it. I am glad you ARE still here and just know it will get better. Every day is a day closer to the end of your treatment. Just try to hang in there. If you ever want to talk let me know. I understand how you feel and would be happy to talk to you and help in any way I can. Take care.
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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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