Genomic Sequencing for your Tumor

As a cancer patient, what were you told about genomic sequencing for your tumor? 
Was this information helpful to you?
What sources of information did you use to learn about genomic sequencing?
What would you like to know about genomic sequencing and cancer diagnosis and treatment?

As a cancer patient, what were you told about genomic sequencing for your tumor? 

(Editor’s Note: We had 35 answers to this question.  23 answered “no”.)

Our Cancer Experience Registry members said:

I was told that I have a BRCA2 mutation. I was provided with a report that indicated where the mutation is.

My first breast cancer was diagnosed in 2009. I was not told about genomic testing; my sister who has metastatic disease told me I should have it done.  I had to really push for it.

My cancer was almost 9 yrs ago.  And I did have the BRCA test if that is what you are referring to.  I was told that it could tell me whether I have a genetic predisposition to cancer.  This would tell me if my family was also in danger of getting cancer.

I was told about the BRCA 1 & 2 testing for my Breast Cancer.  As I had already been diagnosed, it was more to decide if other members of my family needed to be tested.

What they could help determine the severity of the tumor and likelihood of its return.

I was told nothing from my surgeon or her nurse practitioner until a friend told me about genomic testing and I explicitly asked for it before seeing the medical oncologist.  I got my own information from the internet.

I was not really told anything but I saw the information when I received copies of my records.  The testing that was done on me was on my bone marrow only.

I am Canadian so this is not funded. However I follow the research closely and I totally support this direction as it has so many benefits to the patient and the cancer care system.

It wasn't really explained very well but I did have the Oncotype DX test

Only testing available was BRCA and my insurance did not cover it.  I could not afford the cost to pay for it myself and have it done.

I was told I am not BRCA 1 or 2. I haven't been given any other information.

When I was first diagnosed (2010), two types of genetic profiling were done - FISH and I have forgotten the name of the other.  Mainly the doctor was looking for certain specific mutations that impact treatment of multiple myeloma; none of these particular mutations was found.  This was considered good news, though I was told that subsequent genetic tests on the monoclonal protein might well show some of the ominous mutations as the myeloma evolved to cope with the myriad therapies thrown at it.

My first breast cancer diagnosis was long before genome sequencing was a possibility.

Was this information helpful to you?

Our Cancer Experience Registry members said:

(Editor’s note: Two respondents said “no.”)

Absolutely. I decided on an aggressive course of treatment. I also got my sisters and my aunt tested. We think we've dodged a bullet--there's a good chance the next generation will be "safe".

Any information would have been helpful; I'm disappointed that it was not available to me.
In hind sight I'm not sure, I had an oncotype score of 19, an intermediate score, all opinions were not to do chemotherapy, which I didn't do! And had a recurrence in 2011, I had oncotype done again but results were inconclusive.

Yes.  I was pleased to know that I didn't carry the gene.

Since I ended up being negative for the two, I feel that my family is less at risk, although I am aware that further testing may need to be done as other things may be found in the future.

With the oncologist it helped us determine the type and length of treatment

The internet was very helpful as was the full report.  I made sure to get a copy and made sure the medical oncologist got a copy

This information helped me to get an idea of my risk level.  It, however, did not match with some of the rest of the tests that were run in relation to risk.  As it turns out it has not been as risky as predicted.
I would find the information very helpful as with my cancer it is know that a Wild Type and an Inherited Type exist. Each has a different response to chemo. I also might be able to determine if relatives may have an increased risk of inheriting my cancer.

Yes, it helped determine course of treatment

It helped me decide to keep my non affected breast.

It gave me some temporary reassurance, but there has been no genetic testing done since then.

At my daughter's request (and before my current breast cancer diagnosis) I had gene testing done.  BRCA1 and BRCA2 both negative.  To my knowledge there was no prior family history of breast cancer although my younger sister and I were both diagnosed at the age of 32. She died at 34.

What sources of information did you use to learn about genomic sequencing?

(Editor’s note: three respondents said “the internet.”)

Our Cancer Experience Registry members said:

My genetic counselor, my surgeon, my oncologist, and, of course, the internet.

Only now am I beginning to read about genomic sequencing from The Cancer 
Experience Registry and Cure Magazine.

My sister and my oncologist.

I am an advocate with the Alamo Breast Cancer Foundation and have attended Project Lead
and many scientific lectures.  I also have been an advocate peer reviewer for the DOD.

Whatever the hospital gave me.

Just what was supplied by the genetics nurse at my cancer center.

Mainly the information the oncologist told us plus the paperwork and percentages that came from the lab with the report

A friend who also was being treated for cancer at the same time.

The explanatory information that came the report.

I searched the web using what I consider to be reliable sources: NIH, Mayo Clinic and other sources like that.

I have watched the process for many years and once I got cancer I paid close attention to the researchers and what they published in the Journal Blood.

The company that performed the test.

My doctor.

Just what I have read on line or in the newspapers.

Hospital genetics counselor.

A course for judges about the topic in a "science boot camp.”  Based on that, and because I had had ovarian cancer and my mother had had breast cancer, I took the genetic tests for the BRCA mutations.  
I was found to be negative for both.

Reading what I could find (and understand) on-line, and talking with my oncologist.

What would you like to know about genomic sequencing and cancer diagnosis and treatment?

Our Cancer Experience Registry members said:


Is it a dream for the future or a reality?

What are the most up-to-date advances in treating hereditary cancers?

Is there information from my 2008 breast cancer that would render a way to do genomic sequencing on the tumor I had then?  That may sound foolish; I just don't know if info known about that tumor could help us learn anything that could help in case of recurrence.

Whether it is applicable to my cancer situation.

As a patient how can you make sure you are up on the latest tests?  I have a brother battling lung cancer and a sister battling breast cancer, they are fighting to survive and need to always keep up on new treatments.

Can it be done 4 years after surgery?


Why doctors do not approach the test with all cancer patients? More info about genomic sequencing given to all; haven’t seen nor read any great amount of knowledge of this.  Why?

I would like to learn more about lobular breast cancer genetic inheritance and recurrence.  I have two daughters and two granddaughters and there was no presence in my family with breast cancer that I know of but my mother did have a hysterectomy at a very young age in her twenties but no one spoke of why.  I had a hysterectomy at 40 years with what the doctor suggested were pre-cancerous tumors on my ovaries -- no further explanation.  I wonder if the drug that I took for 22 years or genetics played the part in my diagnosis.  I have had a difficult time finding out this information.  I think that targeted therapy is the best thing that is available but of course we all would like to see a preventative treatment.

I would like to know what updated genetic information is available regarding causes of breast cancer and how it is being used to determine future treatment.

It's been almost five years since my diagnosis/treatment and I pray they are making great strides in accurate diagnosis and treatment for those who are standing on my shoulders............

I like to read articles whenever I find them. The Cancer Experience Registry newsletter was informative.

Actually I am would just like to know how it affects my treatment.

I would like to know how Canadians can access this very important resource. How I could participate in any way to support it and research. Can it be helpful for current cancer patients?

At this stage, it would not help me as I am 7 years out but I do think it is very important for people in early diagnosis.

I have MBC to the Bone.  At this point tumor markers are stable.  This is about the 5th treatment I have been on.  I assume this will fail also.  Is genomic testing available for me?

I am facing a recurrence of breast cancer after treatment. Would the genomic sequencing be helpful for treating my recurrence?

Are there other genes we should be looking at?

I would love to know if there is any reason in my particular case to explore genetic sequencing. 

I would like to know as much as possible about the chances of my cancer recurring, especially if I am genetically predisposed.

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