Kirsten Has Stage Four Neuroendocrine Cancer

Yesterday Kirsten and I visited Dr. Devon Evans, an oncologist. He asked Kirsten about her maladies and how she was feeling. He already knew what was wrong. He asked her if her family has a history of cancer. Then, he dumped it on us. Kirsten has stage 4 neuroendocrine cancer. As the late Christopher Hitchens said after learning of his own cancer, “There is no stage 5.”

I had talked for a bit with Dr. David Agus at PopTech. Dr. Agus was Steve Jobs’ doctor, and is an expert of cancer. He said Kirsten is a zebra, not a horse, and she ought to be at Harvard where they treat lots of zebras. So, I asked Dr. Evans for a referral, which he understandably gave to us.

Kirsten has two tumors in her liver and another on her left hip bone. Her cancer is metastatic, most likely ACTH-secreting, neuroendocrine. The metastatic nature is what makes it a state four. Although there is no direct evidence that they are secreting ACTH, her ACTH levels are high, and it’s coming from somewhere. They do not yet know the source of the tumors, and therefore don’t know what course to take and in what order. Next is a biopsy of her iliac tumor. If it’s not a tumor, they will likely resect and ablate the liver lesions. Otherwise, Kirsten will start on a pill regimen.

The positive bit about all this is that neuroendocrine tumors are usually slow growing. Death comes from organ failure, as one would expect.

Below is a video I cobbled together from recent imaging studies. Kirsten has had them all. I’ve marked the tumors where I could do so confidently.

33 Comment

  1. My mom sends Kirsten love, as do I. Stage four has been our ears as well.

  2. Janice ORourke says: Reply

    Thank you for sharing this. It is enraging. I’m glad you spoke with the doc at Pop Tech. I’ll be interested in what Harvard has to say. The videos, though presenting bad news, are beautiful. As is Kristen, inside and out. Hug.

    1. Thank you, Janice. I agree, Kirsten is beautiful inside and out. ;)

      Science is cool.

  3. Jeff Olivier says: Reply

    Brent, Kirsten, and family: So sorry to find this out, but you couldn’t have gotten a better referral. Kirsten is so lucky to have you [Brent] on her side to advocate and deal with the doctors. I’m am here for you buddy if you ever need to just vent.

  4. Sara Sterling says: Reply

    I’m sorry. My heart and thoughts are with you all. I hope you find a good doctor.

  5. Amazing imagery but my wonder at its beauty does not relieve the ache I feel for the both of you and your girls. I am so sorry Kirsten and Brent. I hope you both as much joy and love as you can endure during this period of intensity and distress. May the doctors be clear and truthful about the options available.

    Love you guys,

  6. Jodi Clayton says: Reply

    This really stinks. I’m so very sorry. Thinking of you guys.

  7. I am so sorry for all of this.
    My thoughts are with you and yours, Brent.

  8. Brent and Dearest Kirsten, Is there anything I can do or help with during this most difficult time. I am so glad for the referall to Mass General. Zebras need sebra care! Please call me if there is anything I can do. Is it possible to visit with Kirsten at home?

    1. Thank you. Absolutely you can visit. Kirsten would love that. Give her a call or send her a text/email. She does need zebra care. :)

  9. I have the same cancer. Calling it stage 4 only illustrates the doctor’s ignorance of this type of cancer. They don’t “stage” these cancers in this way. I was told the same thing. Some people have this degree of this cancer for decades.

    1. While there is definitely a lack of consensus on staging of neuroendocrine tumors, it is not correct to say they don’t stage them. Furthermore, you can not possibly know if you have the same cancer, as we still do not know what type of cancer Kirsten has, or what is the primary source of the tumors. What we do know is that she has various tumors in multiple locations, which is the most advanced stage of every cancer. While it is true that some people survive many years with neuroendocrine tumors, as they are usually protracted, Kirsten’s tumors secrete prodigious quantities of hormones into her blood stream, indicating a high level of activity.

      I am glad you are doing well. However, you can not generalize the entire (extremely tiny) population of neuroendocrine cancer patients simply by referring to your own anecdotal experience. I have read the literature. I have studied the treatments and prognosis. It would serve you well to do the same.

      “Some” patients die quickly, and after having endured tremendous discomfort. You left out that part.

      1. You are understandably angry right now. Perhaps in the future, a simple thank you to someone who is walking the same path might suffice. Not everyone is as brilliant as some may be but, if we are lucky, we gain wisdom with age.

        1. Thank you, Tom. You are correct.

    2. Siegrun H. Wood says: Reply

      I am one of those who has neuroendocrine cancer for 11 years. That is 11 years of diagnosed disease. I believe I had it for at least 5 years prior to diagnosis. I just want to encourage you and let you know that I have been living with the disease. I had debulking surgery, chemotherapy and now I get once a month a shot of Sandostatin. I have a CT Scan twice a year. Sometimes there is growth and sometimes there is a reduction of my mets. So believe me it is not hopeless.

      1. Siegrun,

        Thank you so much for that response, and I’m thrilled for your positive health! Modern medical science is truly remarkable.

        At our most recent visit to Dr. Kulke at Dana-Farber Cancer Institute, at which time Kirsten had a PET scan, we were told Kirsten is in “remission.” This means, as you know, that they did not detect any cancer tumors (not that she doesn’t have cancer). We’re thrilled. She’s feeling well, considering, and we are increasingly positive about our future.

        I wish you all the best. Thank you for your comment.

        Brent

  10. My mother was diagnosed with neuroendrocrine cancer in march 2012…. and found out after lots of radiation and chemo that it has spread to the liver and bones (stage 4) but hers is moving quite fast!

    1. I am so very sorry for you and your mother and the rest of your family, Katie. Life is not fair. If I’ve learned anything through this, it’s that.

  11. Brent & Kirsten – I’ve only just picked up on this and so don’t know your history. I have confirmed ACTH discreting tumours – I have never come across other people yet- I think it is quite rare. My primary was found in bowel, secondaries in liver, lymph nodes & several bones too (you can read more about it on my website if you are interested). I just wanted to say our thoughts are with you, as with all others with this, if you wanted to get in touch with regard to the symptoms I had, please do so. I had my adrenal glands removed – not because they had any NETs, they didn’t, but just to reduce the hormone secretion – my life has been changed since. Wishing you all the best x

    1. Kirsten Uhler says: Reply

      Sharon, thank you for sharing your experience with NETs. I went to your website and read your story. You have a beautiful family! I was amazed at how similar our situations are. I appreciate having someone with whom to relate and would love to be in touch. Your story and your blog are inspiring, and I love that you want to make a difference. I’ve considered participating in a cancer research study for Dana-Farber/Brigham and Women’s Cancer Center, hoping to help others with this same condition.

      1. Hi Kirsten – I have to say doing some fund raising is really helping me, in many ways, as well as hopefully doing some good for ongoing research. There is very little that can be positive about the situation itself and so at least, for me, I am hoping something positive can result from it. It can be a ‘distraction’ but at the same time the opposite as it is helping to be able to talk about it with others and it brings in lots of support. All I will say is that I only started about 3 or 4 weeks ago and it can be very tiring and it’s important to remember to do just what is in your means. x

    2. I nearly cried at my desk today as I read your story, Sharon. There are so many similarities between your experience and Kirsten’s. It’s great to connect with people who understand what we are going through, because they’ve been through it.

      I’m curious what you and Mark (a true hero, if ever there was one) think of end-of-life questions. It’d be great if we could meet up at a pub and enjoy a pint together.

      1. Brent & Kirsten – yes it was through Net Cancer Day I picked up on your links! I offered my contact as I know how difficult I personally found it not being able to speak to anyone who was experiencing what I was – please feel free to contact me through my web about anything & I will also let you have Mark’s email. We are based in the UK but next week (all being well) we are about to embark on a worldwide trip -going to New Zealand and then US (LA; Florida; New York briefly)- I am determined to enjoy quality time and create as many ‘great’ memories for my family as I can,…and I love travel..so somehow, I’m not sure how really, but we have this trip planned which will be just part of those memories. Do get in touch – I’m sure there will be a mutual support somehow.

    3. Sharon – Are you familiar with NET Cancer Day? I discovered them today.

  12. Kirsten Uhler says: Reply

    Thank you everyone for your kind thoughts, love, and support. This has all been discouraging and scary for us, but it also helps me to appreciate what I have.

    Marnie, I would love a visit from you. :-)

  13. […] I discovered NET Cancer Day, after they had posted a link to this blog on Twitter and Facebook. After visiting their website, I realized why Dr. Agus had referred to […]

  14. [I put the description through Google Translate for you, and posted here. The entire post comment was a link to the Facebook photo album. ~Brent]

    “I try to convey to all who suffer carcinoid syndrome, bone cancer, a liver transplant, or cancer of the mediastinum, the way of living, and treat SUPERARLO.Quiero especially thank the staff of the transplant unit medical City Arrixaca Virgin of Murcia (Spain) and staff of the University Hospital of Uppsala (Sweden) at the Dept of Endocrine oncology, its director Dr. Kjell Oberg and especially to my doctor Dr. Dan Granberg and his wife. A special section is with all my heart to Dtor.Fco. Tebar Javier Masso, Head of Endocrinology at the Arrixaca of Murcia, Mod. PONS Digestive Medicine Service special liver transplants for all you have done and do it to live as dignified posible.Quiero tell my story and who I need or seek information, an outlet when you’re in those moments that all look great black, no doubt, I’m here to help, as others have done with me. Antonio F. Fernandez.”

    https://www.facebook.com/media/set/?set=a.1071949055565.9116.1731313990&type=1&l=a394001ea2

  15. I, too, was diagnosed stage 4 in October 2012. Sandostatin has been a miracle drug to help with all the symptoms. Mine started in my appendix and at the time of my diagnosis, I had 20+ tumors in my liver, 2 in skeletal locations, one in my abdomen, and now, as of last month, a new one in my breast (not to be confused with breast cancer, which I also had about a year ago.) I was shocked to read what you said about death coming from organ failure…nobody has told me that. The first two years my husband would wake up at night to check and see if I was still breathing. I am just coming to terms with the fact that this is not only a terminal disease, but, because it moves so slowly, it is also a chronic disease. I’d like to think I have decades left to live, but right now I’m having more bad days than good ones. I hope all continues to be well for you and Kirsten are still doing well.

    1. Kirsten died in May, ultimately from a tumor anterior to her brain stem. In the end, she declined surgery and radiation which would surely have prolonged her life and decided to instead be at home until hospice was a better option.

      The suffering we’ve all been through, and through which she endured for many years, is indescribable. My heart goes out to all who suffer.

      I hope you are well.

  16. My cousin Keriston was just diagnosed with this yesterday. The cancer is located in her overy, liver, kidney, GI and lungs. She was treated for thyroid cancer 5 tears ago. Her screen last year came back clear.

    1. I am so sorry to read this, Nikki. It breaks my heart to learn that anybody is suffering as I have and do. Life certainly is not fair.

  17. I have a friend with an aggressive form of nueroendocrine carcinoma stage four.his doctor told me that it’s a very aggresive form and he could live at most 18 months.

  18. Martin hamann says: Reply

    I’m so sorry Brent.

Leave a Reply