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Anyone here with another primary cancer diagnosis??

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Comments

  • traveltext
    traveltext Member Posts: 1,055
    edited April 2017

    Thanks WJGS, I'll try and find the paper on NDRG1.

    As it happens, I have recently received a new gene test report from Color Genomics and they found no mutations for the following genes:

    APC, ATM, BAP1, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4*, CDKN2A (p14ARF), CDKN2A (p16INK4a), CHEK2, EPCAM*, GREM1*, MITF*, MLH1, MSH2, MSH6, MUTYH, NBN, PALB2, PMS2**, POLD1*, POLE*, PTEN, RAD51C, RAD51D, SMAD4, STK11, TP53

    The only tested gene I have a problem with is BRCA1:C.135-62T>C which has a variation of unknown significance.

    Since the Genetic Counsellor is sure there is a genetic reason for my breast and prostate cancer, I'll keep searching for eh gene!


  • traveltext
    traveltext Member Posts: 1,055
    edited April 2017

    Hmmm, just found this:

    The association of NDRG1 and prognosis of cancer patients is controversial. Some studies have found that downregulation of NDRG1 in cancer worsens the prognosis of cancer. There is an inverse relationship in the levels of NDRG1 expression and the Gleason grade of the tumor in prostate cancer. A high PTEN (a tumor suppressor which positively regulates NDRG1) and NDRG1 expression improves survival rates in patients with breast and prostate cancer. HERE

    Thanks again WJGS, it's real detective work!!


  • WJGS
    WJGS Member Posts: 6
    edited April 2017

    I've probably read close to 100 papers referencing NDRG1; everyone suspects it plays a key role in cancer and schwann cell maintenance, but no one knows exactly what that role is. And it is difficult to determine, partially because it is ubiquitously expressed and also presumably because mutations on it are extremely rare - the one I have is novel, meaning it's never been recorded before. Also because, as you read, its impact varies, depending on what is going on both upstream and downstream - unexpected input may lead to unexpected output. The Sydney researchers aren't working specifically on prostate cancer but rather on the gene itself - they have a wealth of info on it, it may be worth checking it out.

  • traveltext
    traveltext Member Posts: 1,055
    edited April 2017

    WJGS do you have the link to the University of Sydney material? Can't seem to find it.

  • WJGS
    WJGS Member Posts: 6
    edited April 2017

    Here's the link to the page of Sydney principal researcher Des Richardson; there are links on that page to some of his NDRG1 research.

    http://sydney.edu.au/medicine/people/academics/profiles/d.richardson.php

    Here's another link that may be of interest to you - from the ICGC (International Cancer Genome Consortium) portal with the top 20 breast cancer + prostate cancer mutated genes.

    https://dcc.icgc.org/projects?filters=%7B%22projec...:%7B%22primarySite%22:%7B%22is%22:%5B%22Breast%22,%22Prostate%22%5D%7D,%22primaryCountries%22:%7B%22is%22:%5B%22United%20States%22%5D%7D%7D%7D&projects=%7B%22from%22:1%7D

  • 2FUN
    2FUN Member Posts: 789
    edited May 2017

    I was DX with IDC sept 2016, endometrial CA nov, 2016 and after path report SHOWED DCIS as well as IDC, I had MX in march 2017. Heading back to work tomorrow and got call from surgeon that I have Hurthle cell neoplasm of the thyroid. Had the same thing 13 years ago. They need to remove the thyroid to look at the whole thing to see if it is malignant or benign. Last time it was benign. Let's hope this one is too. All my genetic testing showed no known genes linked to CA. Kind of gives you a false sense of security. I'm going to try to have my thyroid removed when I have my TE exchange and more margins removed. I'm really getting tired of all of this, but I'm not going to let this bring me down!

  • lekker
    lekker Member Posts: 238
    edited May 2017

    I'm sorry to hear that you're going through another round of thyroid issues. I hope it turns out to be benign. Please update us when you get your results. I hope your exchange goes well. I have to say, getting my implants was a good day for me - I got immediate relief from the discomfort of the TEs.

  • 2FUN
    2FUN Member Posts: 789
    edited May 2017

    lekker, can I ask how you discovered your colon cancer? I have a wierd feeling about my colon health. I'm trying to schedule my colonoscopy ASAP. I've put it of for 3 yrs now.

  • ThreeC
    ThreeC Member Posts: 70
    edited May 2017

    Basal Cell Carcinoma, Squamous Cell Carcinoma, Pappillary Thyroid Carcinoma, Hashimoto's Autoimmune Disease, and Breast Cancer newly diagnosed but still completing final diagnosis. No genetic testing yet.


  • lekker
    lekker Member Posts: 238
    edited May 2017

    2FUN - I had one episode of fairly significant bleeding after a bowel movement. I had a new primary care doctor through an HMO and she took it seriously. The polyp was about 1.5CM but only a small area at the top of it was carcinoma.

  • GrendelDog
    GrendelDog Member Posts: 7
    edited May 2017

    Stage IVa Thyroid (papillary) diagnosed in 2013 then the IDC in 2016. Did full genetic panel of tests, and nothing popped up, so it looks like I'm just lucky :)

  • lekker
    lekker Member Posts: 238
    edited May 2017

    GrendelDog - did you receive any radiation for the thyroid cancer that might've caused the breast cancer? I've heard of it going the other way around. Either way, sorry to see you here.

  • Yoxter123
    Yoxter123 Member Posts: 12
    edited July 2017

    So I have decided to be different .!!.. Diagnosed with ILC,IDC,LCIS,DCIS Left Breast May 2015, treatment as outlined in my Tagline. . Bumpy couple of years with CIPN ,AI side effects..... Was still continually exhausted .my onc is amazing and listened to my gut feeling that something wasn't right. PET showed ? On right kidney .....following various other scans .... They questioned RCC as one diagnosis .i opted for robotic partial nephrectomy as I wanted a conclusive answer. Pathology came back as clear cell renal carcinoma ...size on scan 1.3mm awaiting full path results........I am absolutely stunned.....the cancer word still hit hard....awaiting staging but can't believe I have another primary .Two months ago I did the color genomics 30 Gene screen similar to Traveltext above..... Came back with no variants detected ..contacting onc tomorrows to Bring forward appointment as I have so many questions.... Anybody know of anybody else that's developed kidney cancer after breast cancer?

    However. Much we get scann anxiety ,,being scanned meant that this was found before I had symptoms ...a better sign for prognosis moving forward...

    Anybody got any info on this or experience of ?? Pretty anxious right now ( back to sleepless nights worrying..it is 3.45 in the morning here in Australia)

    Thankyou

    Sorry for long essay !!

  • Lula73
    Lula73 Member Posts: 705
    edited July 2017

    Hodgkins lymphoma in '87 - exploratory laparotomy w/splenectomy, chemo & rads

    Melanoma in '04 - in office excision

    Thyroid cancer in '04 - thyroidectomy

    BC in '17 - skin & nipple sparing BMX w/immediate DIEP flap recon, Tamoxifen therapy til it tried to kill me with dvt & pulmonary emboli

    Genetic testing positive for BRIP1 so oophorectomy planned with addition of hysterectomy due to the Tamoxifen usage.

    There should be a hard & fast rule limiting the number of cancers you can be saddled with

  • lekker
    lekker Member Posts: 238
    edited July 2017

    Yoxter - I'm sorry you've received a second diagnosis but glad it was found before it caused any symptoms. I have a couple of friends that had a nephrectomy as their only needed treatment for kidney cancer and I hope you're done too!

    Lula- wow you've been through a lot! I haven't studied the BRIP1 gene mutations. I hope you're done with cancer diagnoses.

  • 2FUN
    2FUN Member Posts: 789
    edited July 2017

    yoxter, I'm sorry you are going thru this. I had IDC and DCIS, and endometrial CA, and am awaiting pathology from thyroid ectomy that I had last week. Also had a "cyst" on my kidney, found during a scan. Your post has reminded me that even tho it doesn't look like anything substantial, I should be keeping an eye on it. My MO isn't surprised my genetics were normsl. She said she sees breast, endometrial, thyroid and kidney together, they just have not identified the genes. Hang in there. Every one I know with kidney CA is still alive 8 years later. They had kidney removed laporoscoply, and they have been fine.

  • 2FUN
    2FUN Member Posts: 789
    edited July 2017

    lula, sorry you are adding to your list of diagnoses. I have just had my 4th surgery (in 9 months)on 5 body parts, so I am in the same boat, let's keep paddling, we have been thru a lot, and we will get thru this!

  • 2FUN
    2FUN Member Posts: 789
    edited July 2017

    I got good news, my pathology reports front the last surgeries were not malignant.Yay!

  • lekker
    lekker Member Posts: 238
    edited July 2017

    2FUN - woo hoo

  • Yoxter123
    Yoxter123 Member Posts: 12
    edited July 2017

    2FUN - that's great news

  • Yoxter123
    Yoxter123 Member Posts: 12
    edited July 2017

    CA thanks for your kind words.. Saw surgeon yesterday -for follow up scan in three months if all good then move on to yearly scans

  • pepper43
    pepper43 Member Posts: 14
    edited July 2017

    Been awhile since I've been on this thread! I had my right kidney removed and pathology report confirmed the mass was Chromophobe Renal Cell Carcinoma. So I'm an official member of the synchronous malignancy club (which makes me want to sing the phrase to the tune of The Police's Synchronicity). Hopefully the removal will take care of that.

    Had my hopefully last surgery ever (or at least for a very long while - 5 in 25 months was a bit much. Got my TE's exchanged for squishies and nipples reconstructed. After my prophylactic ovary removal, I had lingering GI issues that prompted MO to order colonoscopy/endoscopy...which revealed a polyp that was pre-cancerous. I've had enough of the C word.

  • lekker
    lekker Member Posts: 238
    edited July 2017

    Pepper - sorry to hear about the kidney and polyp. Sounds like your body tends to make cancer. Have you had any genetic testing? I've been tested for pretty much everything but no mutations were found.

  • pepper43
    pepper43 Member Posts: 14
    edited July 2017

    I've been tested twice for genetics- no mutations found. I'm tending to think they haven't found the variation yet but who knows. Le sigh.

  • 2FUN
    2FUN Member Posts: 789
    edited July 2017

    I feel for you papper. I'm recovering from 4 surgeries in 8 months for 3 cancers. My MO says he is sure the will find a genetic link soon. I also think of constantly low level exposure of carcinogens in my environment (that I don't know about) welcome to the club!

  • Lula73
    Lula73 Member Posts: 705
    edited July 2017

    On the genetic testing for those of us with multiple cancers, they can also run the test for what they call Variants of Unknown Significance or VUS. They came up with 3 more variants when they ran it for mine after the initial test was run (they use the same blood).

  • traveltext
    traveltext Member Posts: 1,055
    edited July 2017

    Yes, I have two cancers and have test BRCA 1 with a VUS. These ambivalent results can be a worry until they are proven to mean something. Apparently there are thousands of VUS and it could take eons before they are all explained.


  • Yoxter123
    Yoxter123 Member Posts: 12
    edited September 2017

    so back again !

    Just had onc appt following CT and bone scan as getting bad bone pain and also due three month scan to check all clear. Had R partial nephrectomy in early June 2017 - pathology clear cell renal cell carcinoma 1.8 mm grade 2 .recovered well apart from bone pain .... Bone scan clear so happy dance and culprit probably the beloved exemestane little pill causing pain .

    Ct scan absolutely knocked me breathless .... A new lesion .probably malignant bigger than the last one ...2.8mm has grown out of nowhere in weeks in the excision site of previous surgery .... See surgeon on Monday so trying with chemo brain to research multifocal RCC ... It's endless just when you have one thing in your head sorted and understood WHAM .....now they are looking at CT much more closely ...... My markers have been up all year.... Not mega high but in the 40's. I haven't slept in three days ...sorry for rant...trying to be calm and collected for my family but my sisters here will understand my massive anxiety.

    Thanks for listening

    Judi

  • lekker
    lekker Member Posts: 238
    edited September 2017

    Judi - so sorry to hear that you might be dealing with even more crap. Have you ever tried anti-anxiety meds to get you through the short term as you try to figure out exactly what that lesion is? Medicines like xanax, Ativan and Valium can be very helpful for a few days if you can tolerate them. Your onc should also be able to refer you to some support services. or you can just keep coming here to vent and we will listen! Please keep us posted

  • 2FUN
    2FUN Member Posts: 789
    edited September 2017

    judi, I'm sending you a big hug. Meds can be helpful to get thru the waiting. Hope it doesn't take too long to sort out

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