Anyone here with another primary cancer diagnosis??

JohnSmith

I assume everyone here is doing comprehensive genetic tests, not just the simple BRCA gene test. It's only logical to look for genetic mutations when you have more than two primary cancers.

These genetic companies (Color, Ambry, Invitae, Myriad, GeneDx, etc.) all offer tests that look at roughly ~20 driver genes which are associated with BC. Like BRCA, I believe all of the genes are "tumor suppressor" (DNA repair) genes. If one of these genes is mutated, errors in DNA replication add up and tumors manifest. Beyond these simple 20 gene tests, are more robust tests that look at hundreds of genes. These tests are obviously more expensive. Science has not quite caught up with the genetic discoveries to determine the clinical relevance. We are moving in that direction though. The most extreme example of gene testing is when you get your full DNA genome tested, which examines all 19,000 protein encoding genes. In the year 2000, in collaboration with worldwide institutions, the first fully decoded human genome was published on the internet. Steve Jobs, x-Apple CEO had his genome decoded for $100,000 in the year 2006, hoping to discover the mutations causing his pancreatic cancer. Today, the cost has plummeted to ~$1,000.

As more people get tested, patterns emerge that shed insight into the initiation or driver events underlying tumor cell proliferation. This generation of genomics data is also referred to as "Big Data". The NCI (National Cancer Institute), private & public institutions, and corporations are scrambling to build the computer infrastructure (databases) to handle this "Big Data". As more people get their genome sequenced, the richer the data becomes... Ultimately the patterns emerge. With these patterns, scientists can develop drugs that target the discoveries in the genome. However, this can't happen efficiently (quickly) unless the computer infrastructure is built worldwide and the silos of data that exist in each location is shared. Sharing this genomic data is CRUCIAL!! Otherwise the patterns in the "Big Data" won't emerge and no drugs will be invented. So, what does this mean for you? If you have the financial means, I'd recommend, you get your entire DNA genome sequenced. Another way to get your full genome sequenced is through clinical trials (although I haven't researched which ones yet).

Here's some of the companies offering genetic tests:

• Color Genomics: $249 Color Kit test. Link https://getcolor.com
• Myriad Genetics: myRisk Hereditary Cancer test. Link
• Ambry Genetics: Makers of BreastNext. Link
• Invitae: Women's Hereditary Cancers. Link (my wife did this one)
• GeneDx: Comprehensive Cancer Panel. Link

Sinsin

To everyone, my condolences! Hang in there!

JohnSmith, great info! Thanks so much for sharing!

Blundin2005

I recently watched the PBS.org program "Cancer, the Emperor of all Maladies". The program covered the historical perspective through to the present. It gave me much more insight into our disease. It was not comfortable to watch simply by the nature of the subject. However, I felt somewhat grateful that it was produced at all, grateful for the people who continue the research, and hopeful because these people exist.

I've had 3 primary cancers now. Breastcancer in 2005 (still NED)-- Bladder cancer in 2008 (still NED)-- and now lung cancer in 2013 (NED as of the 6 mo. CAT March 12). Most of my strength returned and I'm back in the garden getting the veggie boxes prepared for planting. I use my body positions when I work for intentional exercises to keep moving forward. I wish the same for all of us.

This thread is supportive to find here. BC.org is evolving too it seems. I'm glad for this. Healthy people are fortunate but can't fully fathom this journey, a fact I've come to accept. Once in awhile, we need to talk to someone who "gets it". My husband fights another devistating disease...his a rare genetic disease...I've found that I can't fully know how he must be feeling either. Our mortality is very personal no matter how great the intentions of others.

Best wishes to all as always,

Marilyn

Rdrunner

I got the last episode of that program and would have loved to have seen it all.

SugarCakes

Rdrunner, it is available to stream on Amazon for $8.99. I watched the first part last night and tonight. I haven't checked, but it's likely available on iTunes as well

Sinsin

Marilynn, with three primary cancers, have you had genetic testing and testing done for othe illness, some rare, that can cause one to have high probability of multiple cancer diagnosis. If not, please have your MO look into it

Yeg9525

I was diagnosed with poorly differentiated stage IIIB signet ring Adenocarcinoma in my colon that originated from my appendix. I was very lucky that it did not make it to the peritoneum where it would have seeded and spread mucous throughout my abdomen. It was found in 4 of 18 nodes tested...I am currently NED for the SRC - it is a rare Cancer.

Pessa

Wonderful to hear you are NED.

Suladog

a second primary cancer in my one remaining breast 25 yrs after the first one. It was dx last Oct.

Sinsin

Congrats Yeg on being NED! Pop the bubbly and celebrate and may you continue to always be NED!

jackie99

I have cervical cancer also

jdfly

2009 dx with lung cancer and had middle right lobe removed. 2015 dx with breast cancer doing chemo to shrink tumor

pepper43

A PET scan after bc dx showed a suspicious mass in my right kidney. A follow up CT scan and urologist visit later and I'm 95% likely to be dealing with renal cell carcinoma. The mass is 6.5 cm. Given the size, my kidney will be removed next month.

Pessa

Pepper 43, Hope the mass is confined to the kidney and that the surgery goes well

I just had the right middle lobe of my lung removed for a new primary lung cancer, one month ago. I had the right upper lobe removed 3 years ago for a lung cancer. They do not think the 2 are related(not a metastasis), which is a good thing, I also had a melanoma 23 years ago, and, of course, the breast cancer 6 years ago. Enough already!

DSW1976

I haven't been on these boards in a long time is sorry for the delay in response. I was diagnosed with malignant melanoma this past July.

Traveltext

Two years after my breast cancer treatment, I was diagnosed with prostate cancer. So I've had a mastectomy and a prostatectomy and am NED for both diseases. Phew!

lekker

This thread isn't very active (I hope that's a good thing and it means there aren't a lot of us who've been "gifted" in this way). Sorry to see traveltext and DSW here. I hope whatever treatments you have to endure are tolerable and work

Lisey

DSW, another melanoma survivor here. (I was stage 1). You may want to look into genetic testing as there is a familial melanoma gene (all of the cousins and I have MM). Also, In doing research, I found some studies showing that some melanomas are estrogen positive.

Charlene1

throat cancer oct 2015

breast cancer June 2016

Pet scan after treatment for throat cancer revealed breast cancer

Ojttocs

Hey Breast and Thyroiders:

I'm having trouble with mets, and there is some indication that my thyroid meds are partially to blame. If I try to keep the thryoid cancer suppressed, I am having recurrence and mets with the breast cancer. My radiation onc thinks there's something to that.

Are you having that problem? How are your docs treating you?

TIA,

ojttocs

mike3121

My wife 3 types of BC: ER/PR+HER2-, 100% erstrogen, grade 1, ER/PR+HER2-, 30% erstrogen, (grade 3 which was in the center of the grade 1 tumor) and triple negative metaplastic BC in her lymph nodes.

After a year NED on tamoxifen PET scan shows numerous mets to spine. Biopsy Monday but oncologist said probably Xeloda next treatment. He fears it's the triple negative come back.

Mike W.

Jesika63

hi everyone- After 2 years of BC dx.., i was just diagnosed with follicular lymphoma. My lymphoma was found during a CT for diverticulitis. There are quit a few ladies i have met at the Oncologist office with this same dx. I also take synthroid for my thyroid (for over 20 years) Hope these cancers don't find their way to my thyroid. I agree with CT picking up just about everything in your body. Good or bad.

Seems like this boards is getting active after all. (

lekker

It sure is getting active. Does anyone here have any idea why they are experiencing multiple cancers? Genetic syndrome? Toxin exposure? Treatment for one cancer causing another? I did the Broca genetic panel out of the University of Washington. Back then they tested 40 known/suspected cancer-associated genes and I had no mutations whatsoever. Maybe it's something they haven't discovered yet. My older brother has never had cancer so I doubt it was some massive toxin exposure in childhood. And my colon cancer was caught so early I didn't even need surgery (removing the polyp was enough). Just bad luck??

DSW1976

Breast and less than two year later acral lentiginous melanoma a rare malignant melanoma on my heel. I am still trying to heal from surgery from in july 2016 .. Melanoma is a beast of a cancer too.

proudtospin

Guess I am dif as my bc just spread to liver

IllinoisNancy

Hi,

I was diagnosed with breast cancer in 2006 with recurrence in 2010 and 2016. I was diagnosed with NETS (Carcinoid) cancer in 2015 that started in my stomach and spread thru my nodes into my liver before I even knew I had it. I'm currently being treated for both. Ibrance and Femara for breast cancer and Sandostatin injections for NETS. My doctors tell me that I'm really a rare case and don't even know anyone else with my combination. Please let me know if any of you have.

Thanks much,

Nancy

ktfelder

lekker - Were you tested for Chek2? I've had breast and thyroid cancer and now have Serrated Polyposis Syndrome (pre-cancerous colon). Besides breast, thyroid and colon cancer, Chek2 also is related to melanoma and cancer of the uterus. Chek2 is very new and they don't know too much about it.

proudtospin

interesting, i had dcis 8 years ago and recently diagnosed eith cancer in my liver, currently on aromasin and affinitor

Lisey

Melanoma about 6 years ago. (it runs in my family)

lekker

Ktfelder - I was tested for CHEK2 as well as 30-some other genes and had no mutations detected (Broca panel from the University of Washington). My genetic counselor told me to check back in with her after 5 years had passed to see if there are any new mutations to investigate. I'm coming up on that date now and I will let you all know if there's any news.