Fill Out Your Profile to share more about you. Learn more...

Anyone here with another primary cancer diagnosis??

Options
1356712

Comments

  • pessa
    pessa Member Posts: 137
    edited August 2014
    Options

    DebbieCaudill,

    There is a thread that I, unfortunately, participate in, for  people with BC and lung cancer which is a new primary, not mets from breast CA.  It is called "Breast Cancer survivor now lung cancer not lung mets".  I don't know how to provide the link but it is under this forum (Breast Cancer with another diagnosis or comorbidity).  There are several of us who have a primary lung cancer diagnosis after having had a breast cancer diagnosis. 

  • fiaranch1
    fiaranch1 Member Posts: 259
    edited August 2014
    Options

    Sinsin,

    I have had all of the genetic testing and it came back negative . I heard "well there is definitely something in your gene pool but we have not discovered it yet ".  "We get new genetic information frequently and will keep you informed" .    So my philosophy is that "everyday above ground is a good day" and I try not to waste any days !!

  • Sinsin
    Sinsin Member Posts: 200
    edited August 2014
    Options

    Fiaranch, have them check for this though I don't think you have it, but it IS very rare. 

    http://www.cancer.net/cancer-types/li-fraumeni-syndrome

  • fiaranch1
    fiaranch1 Member Posts: 259
    edited August 2014
    Options

    Sinsin,

     

    Interesting read ............Thanks for sharing .  Also I forgot to add That I have had multiple skin cancers over the years (melanomas) .  So my life also consists of dermatologist visits  every 3 months.

    I would encourage you all to have at least 1 thorough skin check by a dermatologist . They can decide how much risk there is for you based on your skin type etc.

    For me it has been Cancer .......the gift that just keeps on giving ............... But I am STILL above ground and that is all I ask for !!!

  • Michele2013
    Michele2013 Member Posts: 232
    edited September 2014
    Options

    2012 breast, thyriod, and skin cancer...brac 2+.  

    Pet scan also indicated a spot on my liver, but my onc concludes it is only a spot.

  • 24april14
    24april14 Member Posts: 1
    edited September 2014
    Options

    after my bilateral mastectomy I had a PET scan to help with staging during this test they discovered a stage 3 kidney cancer. Since the diagnosis I have had my kidney removed and had to delay my chemo until now. I go for my 4th treatment with taxol this week.

  • lekker
    lekker Member Posts: 238
    edited October 2014
    Options

    Jo-5: of course it counts!  Whether your multiple primaries were caused by genetics, treatment (like angiosarcoma after rads) or something else, it's still scary to hear "you have cancer" again.  A special acknowledgment to april and anyone else who's had to deal with multiple primaries at the same time (synchronous)!  Yikes! 

  • Galsal
    Galsal Member Posts: 754
    edited October 2014
    Options

    Less than three years after the BC diagnosis, today I just was notified of a Skin Cancer diagnosis.

  • april485
    april485 Member Posts: 1,983
    edited October 2014
    Options

    Oh no Galsal....that stinks Scared Hope that your treatment goes smoothly and easily. Hugs!

  • specialk
    specialk Member Posts: 9,221
    edited October 2014
    Options

    galsal - I had the first skin cancer dx at 35.  Then one every few years.  Then one a year, now multiples a year.  I had three removed right before I started chemo.  I have had five since my BC dx.  All together I have had about 25 of them.  Lately, they have been removed by wide excision - which is equivalent to a lumpectomy, and I have now had my first recurrence of skin cancer that required a MOHS surgery.  If you would like any info PM me.

  • Michele2013
    Michele2013 Member Posts: 232
    edited October 2014
    Options

    Breast cancer

    Thyroid cancer

    Skin cancer

    Had pet scan 11/2012 after diagnosed with bc. My thyroid lit up, it was biopsied and results were benign. Thoracic Surgeon and onc agreed it needed to come out anyway. Of course it was cancer. Same thing with my bc, had biopsy and it came back "as not cancer" so my surgeon said it should come out due to size. So I had a lumpectomy...it was cancer. Even my lymph node biopsy was b9. After chemo I had a bilateral mx, chemo did not kill the cancer in my nodes, in fact I had extracapsular extension in 3 of them. 

    Guess I am leery of biopsiesScared

    Then I had spots pop up on my legs, chest, face, and ears. My skin cancer doctor said after chemo, the circulating cells will bring them to surface. Think this is what he meant.

    So because I am BRCA 2+ I had a total hysterectomy and thankfully all was good.

    Michele

  • Kudra
    Kudra Member Posts: 29
    edited October 2014
    Options

    I have stage 1 cervical cancer. 

    I had just been diagnosed with BC and was having multiple tests including a simple Pap Smear. 

    The Gynocologist  just looked and said I had a lesion she suspected as cancerous.

    Strangely, after refusing a suggested radical hysterectomy it's pretty much stayed the same. My pet/ct scans show occasional slight progression then slight regression.

    There are so many other things going on I just can't seem to worry about it. 

    I just got new pet results showing significant progression in spinal mets and other such nonsense. Pulmonary nodule, coronary atherosclerosis, etc. just feeling a little defeated today. 

    With all of it I mostly feel lucky. I have great pain management and so far my side effects from different meds have been manageable. I'm switching to tamoxifen this week. Ugh! 

    I wish you all well and feel whiney when I read all your stories. Like Sinsin says, "just keep on swimming" I love that!

  • Kudra
    Kudra Member Posts: 29
    edited October 2014
    Options

    I have stage 1 cervical cancer. 

    I had just been diagnosed with BC and was having multiple tests including a simple Pap Smear. 

    The Gynocologist  just looked and said I had a lesion she suspected as cancerous. Then a biopsy, etc.

    Strangely, after refusing a suggested radical hysterectomy it's pretty much stayed the same. My pet/ct scans show occasional slight progression then slight regression.

    There are so many other things going on I just can't seem to worry about it. 

    I just got new pet results showing significant progression in spinal mets and other such nonsense. Pulmonary nodule, coronary atherosclerosis, etc. just feeling a little defeated today. 

    With all of it I mostly feel lucky. I have great pain management and so far my side effects from different meds have been manageable. I'm switching to tamoxifen this week. Ugh! 

    I wish you all well and feel whiney when I read all your stories. Like Sinsin says, "just keep on swimming" I love that!

  • Sinsin
    Sinsin Member Posts: 200
    edited October 2014
    Options

    Galsal, sorry about the new diagnosis! My mom is a double skin cancer survivor! Hang in there and I hope it is something simple where they can just remove it!

    Kudra, you just need to catch a break!! I am so sorry and fuck cancer! I wish you good luck on the tamoxifen! I am to start Arimidex soon as I am going to have my ovaries and tubes removed. Fun times! Not! 

    Best of luck to all of us and remember, just keep on swimming! 

  • Michele2013
    Michele2013 Member Posts: 232
    edited October 2014
    Options

    Galsal and Kudra, I love Sinsin's mantra..."just keep swimming"

  • Canucklehead
    Canucklehead Member Posts: 1
    edited November 2014
    Options

    Thyroid, kidney, Phylloides, now breast.

     

    All in 2 years.  I'm depressed and in shock :(

  • Sinsin
    Sinsin Member Posts: 200
    edited November 2014
    Options

    Canuck, I would have your MO start looking into other things that could be causing your cancer with so many different diagnoses. It's possible you could have an underlying illness that is causing it. If you figure that out, then hopefully, you can treat it and not worry about more cancer.

  • elabee
    elabee Member Posts: 6
    edited November 2014
    Options

    As a follow-up to SinSin's post in August, Li-Fraumeni syndrome (a mutation in the p53 gene) is associated with multiple primary cancers. It is considered a rare syndrome with slightly over 400 known cases in the US. However, as of the last year or two, it is now being tested for more frequently with the thought that it may be more prevalent than previously considered.

    The guidelines have changed to testing those with breast cancer under 35 who tested negative for a BRCA mutation. My understanding is that the guidelines may change to testing those 40 and under. I was at the threshold being diagnosed with breast cancer at 34 and almost didn't have the test done. I ended up having the mutation and so does my identical twin sister.

    For those thinking about getting tested, although it can be scary, I find that it's helpful to know since it leads to careful screening and helps in finding ways to limit risk or rethink treatment. For example, radiation is usually avoided for those with this syndrome since it can lead to different primary cancers within the area radiated. Additionally, since having multiple primaries is extremely common with this syndrome, doctors will be watching more carefully and more likely to find something sooner rather than later.

  • Sinsin
    Sinsin Member Posts: 200
    edited November 2014
    Options

    Yep. And personally, with that many primaries, I am surprised that your MO hasn't decided upon testing to rule out other causes.


  • mommy13
    mommy13 Member Posts: 13
    edited January 2015
    Options

    I was diagnosed with Li Fraumeni syndrome in 2014


    I would see a genetic counselor then they can at least monitor you closely if you do have it

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2015
    Options

    "I was diagnosed with stage 2 grade 2 breast cancer in October. Just diagnosed with Melanoma. Not sure which stage yet, waiting on the SNB results. Pet scan did not show any active areas. My oncologist seems more concerned With the Melanoma than he was about. My breast cancer. I am wondering if the chemo lowered my immune system enough to allow the Melanoma to become active. So far they have said it is thin, which is good however it does have rapidly dividing cells which is alarming. I have three taxols left and then on to Rads. Not sure what the treatment course will be for the Melanoma yet.........."


    Hi, I'm just replying to this post quoted above by Northwinds.

    It's awhile since she posted.

    I just wondered how you went with the melanoma Northwinds?

    Anyone else been through it?

    I'm waiting to have a probable melanoma on my back excised.

    I'll start a thread for that when i get my path report back.

    I've been reading that there are strong links between BC and Melanoma. (unfortunately.)


  • bluepearl
    bluepearl Member Posts: 133
    edited February 2015
    Options

    I heard the breast cancer survivors have a 30% chance of getting another type of cancer. UGH.

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2015
    Options
  • ca55
    ca55 Member Posts: 11
    edited February 2015
    Options

    I was diagnosed with IDC in October, and had a sentinel node biopsy in November, 2014 prior to having my mastectomy. The surgeon removed two sentinel nodes, and one other small node behind one of the sentinels that "looked funny". After a PT scan to confirm, I was diagnosed with follicular lymphoma, too.

  • ceanna
    ceanna Member Posts: 3,120
    edited February 2015
    Options

    Had both papillary and follicular thyroid cancer five years ago and had thyroid removed, and now BC diagnosed Nov. '14.  I see quite a number of thyroid and BC responses so not sure I believe my MO's negative response to my question about a connection.  After thyroid cancer I had radioactive iodine treatment and wonder if there's an aftermath to that treatment.  Anyone else in same situation or know of research on that topic?

  • Rdrunner
    Rdrunner Member Posts: 67
    edited February 2015
    Options

    Diagnosed with BC Nov 2012, Just diagnosed with a carcinoid or the newer term neuro endocrine tumor of the stomach. Having surgery to remove 2/3 of my stomach Mar 27.

  • pessa
    pessa Member Posts: 137
    edited February 2015
    Options

    Wishing you well on your surgery.................

  • Angelique33
    Angelique33 Member Posts: 3
    edited March 2015
    Options


    Endometrial Cancer Stage 3 in 2014

  • Ihopeg
    Ihopeg Member Posts: 92
    edited March 2015
    Options

    Melanoma 2001, stage 3 ILC 2008, stage 3 papillary tall cell carcinoma 2015,, WTF???

  • JohnSmith
    JohnSmith Member Posts: 61
    edited April 2015
    Options

    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