My experience: surgery and progression

(Editor’s note: This is Part 2 of Beth R. McGivern‘s piece on her experience with NET cancer. In Part 1, she talked about her experience with the initial diagnosis of her disease and her decision to take part in the Gallium-68 PET scan trials. She detailed her experiences with that scanning method, as well. In Part 2, she talks about her decision to have surgery, and her recent discovery that her disease is progressing again.)  

DFCI weighs in

I went to Dana-Farber (DFCI) in early 2013 for a consult. Dr. Jennifer Chan was very clear and honest about my situation– it was the first time that I felt I was hearing the whole situation and potential consequences of my decisions. She said that the large tumor was already pressing in on my small intestine–she showed it to me on a CT scan slice–and that there was near certainty that I would have a bowel obstruction due to that tumor at some point in the future.

Hopefully, the progression will be slow. 

This was quite similar to Dr. Liu’s opinion, except she was an oncologist, not a surgeon. She set me up to meet with a surgeon and said that Dana-Farber was not going to do a huge, long surgery to get most of the extensive tumors out. They would take out the large tumor and the part of my small intestine that was causing the problem and whatever was nearby, but would not take out the smaller, more widely spread tumors. The surgery would be 3-4 hours.

Moving forward

At that point I had three opinions for surgery and two for watch and wait. I met with the surgeon, was convinced that this was a necessary step, and moved my care to DFCI. I was still nervous about the surgery and waited until after the summer because I wanted to be healthy for my niece’s wedding in August.

They would take out the large tumor…

I had the surgery in September, 2013 and they removed about 90 percent of my tumor load.   During the surgery they removed two large tumors (the one hanging from my liver and a pelvic tumor that was about 6.6 cm) plus about 100 cm of my small intestine.

Surgery impact

Also removed was a 1 cm tumor in my right ovary and the corresponding fallopian tube.  The doctor did not remove my gallbladder which is ok with me because I’m not having any trouble with it. The surgeon said that he got more than 90 percent of the tumors out, which is excellent.

I was still nervous about the surgery…

The surgery was large; I had tubes coming out of every orifice and I was in the hospital for six nights. The recovery took a long time.  Long term effects of the surgery have been difficulty with nutrition absorption, frequent bowel movements and some loss of bowel control.

Post-surgery, I continued on Sandostatin LAR with semi-annual scans–and things remained status quo until this March. Then it finally happened: the dreaded news of cancer progression. After 4+ years on Sandostatin LAR and the debulking surgery, my remaining tumors have started to grow and progress. The good news is that there are no new visible tumors.


This March, my MRI showed tumor progression in my liver and one of my lymph nodes.  We increased my dose of Sandostatin LAR from 20 mg to 30 mg in March, hoping that might slow down any further progression. My doctor wants to do another MRI in July to see if the tumors are still progressing. In July, if the tumors are stable, we’ll just continue with the 30 mg Sandostatin LAR.

…my remaining tumors have started to grow…

Since there are no approved drugs for mid-gut NET patients who have progressed on Sandostatin LAR, Dr. Chan mentioned some clinical trials that I might be well suited for that are going on at Dana-Farber:

  • Immunotherapy Phase 1B trial of MK-3475 for patients with advanced solid tumors
  • Angiogenesis inhibitors (a new form of chemotherapy)–there are a few choices for me in this category


The immunotherapy trial sounded interesting.  MK-3475 is the immunotherapy drug that has been used in advanced melanoma patients that has put some of them into remission.  It works by targeting a protein called PD-L1 that allows the cancer cells to live and multiply without disturbance from the immune system.

We increased my dose of Sandostatin LAR…

MK-3475 is a drug that blocks the PD-L1 protein so that your own immune system can attack the tumor. Basically, if my tumor tested positive for PD-L1 then I would be eligible to try this clinical trial to see if the drug would work for my NETs.

Other options

Unfortunately, my tumor was not positive–and from what I understand, none of the NET tumor samples tested positive.  I guess it means that this particular pathway to immunotherapy does not work for NETs – and from what I’ve heard, most other gastrointestinal cancers. So if the tumors progress further, it’s on to angiogenesis inhibitors for me.

The immunotherapy trial sounded interesting.

These drugs have dissimilar side effects from most conventional chemotherapy medications because they work very differently. Rather than killing healthy cells along with cancer cells, as many chemotherapy drugs do, angiogenesis inhibitors only prevent new blood vessels from forming.

Fighting angiogenesis

At this point, there are no FDA approved angiogenesis inhibitors for mid-gut NETS.  For pancreatic NETs, Sunitinib (Sutent) and Everolimus (Afinitor) are approved. The clinical trials that my doctor presented to me are for two drugs:

  • Cabozantinib:  This is a phase 2 trial of a drug that is already approved for thyroid cancer.
  • Aflibercept:  This is also a phase 2 trial of a drug that is already that is approved for colorectal cancer.

…angiogenesis inhibitors only prevent new blood vessels from forming.

Both these drugs, like all cancer drugs, have multiple side effects associated with them.  All things being equal–and I don’t know if they are–I’d take the Cabozantinib because it is available in pill form rather than as an infusion. Neither of these clinical trials is randomized, meaning that there is no placebo arm, so if I do one of them, I will definitely be getting the real drug.

Considering options

My issue with angiogenesis inhibitors is that they seem to work better for pancreatic NETs than for mid-gut NETs.  My feeling is based on some articles I have read and the fact that they are only FDA approved for pancreatic NETs. My doctor generally agrees with me, but believes that the inhibitors may still work for mid-guts, just not as well as they do for pancreatic NETs.

…I will definitely be getting the real drug.

She also suggested taking Afinitor on an off label basis, meaning that it is not approved for my specific condition. It is already approved for pancreatic NETs, so if I took Afinitor, at least I would not be subject to the rigorous rules of a clinical trial. Novartis released information last week about a phase III trial called Radiant-4 that showed Afinitor met the trial goals for gastrointestinal and lung NETs. This study might be enough for the FDA to approve Afinitor for other NET types than pancreatic.

Into the future

I asked her if we should consider peptide receptor radionuclide therapy (PRRT). She said that this could be a possibility at a later stage. At this point my tumor load is light and I don’t have too much carcinoid syndrome. The angiogenesis inhibitors make sense to see if that helps slow progression.

She also suggested taking Afinitor…

My doctor thinks that there may be PRRT trials available for mid-gut NETs in the US in the next year. It may make sense to partake in that treatment. I could also go to Europe for PRRT, where they are much farther along in the development of this therapy. I have some time to think about this as I wait for my disease to progress. Hopefully, the progression will be slow.

(Editor’s note: Beth R. McGivern walks on our NETwalkers Alliance Jimmy Fund Marathon Walk team. All funds raised by that team go to support NET cancer research at DFCI. If you would like to donate to Beth’s walk, you can do that here. If you would like to join our team, you can do that here.)

For most, surgery only offers time for us to find a real cure for NET cancer. Working together, we can end NET cancer.

For most, surgery only offers time for us to find a real cure for NET cancer. Working together, we can end NET cancer.

Posted by walking with jane on June 20, 2015

3 responses to “My experience: surgery and progression”

  1. Bravo Beth!
    What a lovely presentation of your personal experience with NET’s. Provides education which at AMENSupport(American Multiple Endocrine Neoplasia) or MEN we present accurate, up to date, medical information. All of the tumors we grow, with MEN) are NET’s. We believe in EMPOWERING individuals and families, so they can then make informed medical decisions.

    I hope you are doing well. Dr. Eric Liu works with many of us that have the cancer causing causing genetic mutation that causes MEN.

  2. Lucy Wiley says:

    Thank you Beth, for an informative account of your treatment. It is interesting to note the differences in various practices. The trend is away from extensive surgery. The Kenner team in Louisiana may be the only place doing this meticulous kind of surgery – which can last nine or more hours. They have documentations on how effective it is to thoroughly reduce tumor mass.

    Kenner also routinely removes the gall bladder because long-term use of octreotide is known to cause serious problems with the accumulation of stones and sludge in the gall bladder.

    After recurrence imaged on 68-Gallium PET/CT, I chose the European protocol: extensive surgery followed by PRRT. You didn’t mention whether anyone suggested PRRT for you.

    Unfortunately, the majority of US docs (except for Drs. Liu and Delpassand) have little or no experience with PRRT and therefore do not often recommend it.

    Best wishes for a progression-free outcome.

  3. Beth Ripston says:

    Hi Lucy,

    Thanks for the good wishes. I’ve always been a “less is more” and a “quality over quantity of life”person when it comes to medical care. I also figured that if I could get 90+% of my tumors removed in a 3 hour surgery, why would I do a 9 hour one to get another 4-5% out? Nobody said they could get everything out so that was not a choice. I don’t believe as many doctors (Kenner excluded) are taking the gallbladder out prophylactically anymore as I think there is evidence that gallstones and sludge is not as common with somatostatin analogues as once thought. I’m not an expert in this area but in my mind, taking out an organ that is working fine with no evidence of sludge or stones smacks of overtreatment. Meanwhile, I’ve been on Sandostatin LAR for 4+ years and my gallbladder is still doing fine and hopefully adding to my quality of life. I am considering PRRT but as of now I have a light tumor load with a very small amount in my liver and not too much syndrome so my doctor thinks it is an option for a later time. I could go to one of the PRRT experts in the US or Europe for a second opinion on that and might just do that depending on how things progress. I hope you’re ok and I’m interested in your current treatment plan as well.