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My journey to here...
Hi, my name is Anita. I found out I had lung NETs in March this year. I was sent for a CT scan to check out some naughty little kidney stones, and the middle right lobe had a neoplasm that started this path.
I've had a traditional PET, a Dotatate PET, and a dedicated chest only CT. I've had 4 separate biopsies; the first one of upper left lung node, traditional done in a CT tube, the second was thyroid with only local anesthesia, and the last 2 via bronchoscopy. Both lung nodes tested positive for NETs. The rogue lymph node that showed up "suspicious" on the PET scans, as well as the thyroid nodule were both benign. I have no other primary source. I do have 3 more nodes-one on each lobe, that are suspected to be NETs but are too small to worry about right now, they'll just be followed.
I've read through some of the posts and I see some differences. Nobody has told me anything about a K scale of any sort. Instead I have a staging: 2A. cT1a, cN1, cMO. The middle one is wrong, because the lymph node biopsy turned out benign. My nodes/tumors showed up much better on the CT than the PET.
I have no symptoms. I would have never known it was there if I hadn't needed the CT for kidney stones. I'm a little tired, that's it. My lungs ache sometimes but I have no shortness of breath and I'm still doing whatever I feel like doing daily. Vacations, shopping, keeping grandkids, etc. My labwork is all well within normal range.
I went through a fiducial placement for the right middle lobe a few weeks ago. It landed me in the hospital with a pneumothorax. I recovered pretty quick and went in a few days later for the mapping only to discover that the fiducials had both moved. Then I saw the surgeon a week later... it might be useful to say that the tumor board recommended from the start that the left upper (1.1 cm) be removed and the right middle (1 cm) be treated with cyber knife radiation. The surgeon said the opposite of that would be smarter and all the team is now on board. Next Thursday I will have my right middle lobe removed. This will allow them to send the whole thing to pathology so we have answers. (There is some debate between tumor board members about whether it really is NETs or not and I'd like to just find out once and for all.) Also, the right side node is only 8 mm from my heart and would be harder to irradiate without hitting my heart. After I've had time to heal, I will go back for fiducial placement again, but on the left side this time. Wait a week, do the mapping, hope and pray they've stayed put, wait another week and get 5 days of radiation. It's been a really, really slow process.
My oncologist has talked to me about the monthly injection but says it's only necessary if the 3 small nodules we are watching start to grow. I've read all I can find. I have a local friend at church and a teacher from high school's husband, both with NETs. That's helped, people to talk to about what to expect.
In two places in my medical portal notes, my cancer is referred to as non small cell. I asked (twice) and they told me it's a typo. That's a bit disconcerting. Anyway, I'm happy to find you. If you have questions, just ask. If you have opinions, share. I'm hard to offend and I know how to make up my own mind from the facts presented/not easily swayed. But I also love having lots of info to sort through. I'm weird like that. 🙂
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Hi Anita,
Thanks for your story. And sorry, but welcome to the “club”.
Sounds like you have been through quite a bit since March. I am not sure if you are seeing a NET specialist but if not, I would encourage you to see someone who works with NETS all the time. They generally can guide you in the latest NET treatments.
My story started in 2013 when a lime size tumor was found in my colon, near the ileum, blocking my colon and causing pain. Surgery followed with the diagnosis of nets to liver, mesentery, and lymph nodes. I continue with monthly injections of Lanreotide. Every 8 months I get updated scans and I am thankful that my remaining tumors are stable – no growth in 12 years.
You mentioned the K scale… From what I understand, Ki-67 determines the growth rate of a tumor. The lower the better…in my case my Ki-67 is 1%.
In fact, my stats after diagnoses were (with my understanding of these stats in brackets)
Well differendiated (may not spread quickly), Grade 1 (slow growing), non-functioning (does NOT secrete hormones), low volume (small tumors), Ki-67=1% (low on scale of aggressiveness), mitotic count - 1 per 10 (measure of cell division-lower better)
Hang in there, and keep learning. Tim
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2 ReactionsThanks Tim! I'm sorry you're in this boat as well. Thank you for the info. How does one go about looking for oncologists who specialize in NETs? I live in a smallish city in MO. I like the oncologist I have but I don't think he's a specialist in NETs. He does seem to know about them somewhat at least; his voice is guiding the tumor board doctors involved in my care, even though he isn't actively treating me himself (yet).
I assume someone has access to my Ki-67 info because my grade is 2. All of my scans were grouped together while they were looking for my official diagnosis. So I'm looking forward to putting some time between now and the next one to get an idea if they are or are not growing and how quickly. The large ones will be gone by then, but the small ones will remain. I hope like yours, they've done nothing!
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1 ReactionAnita,
You asked, “How does one go about looking for oncologists who specialize in NETs?”
There are some NET specialists/surgeons that are quite well known in the NET world because they are well respected, very knowledgeable, and have helped many. I will list a few that I am aware of:
Dr. Eric Liu in Denver, Dr. Jonathan Strosberg at Moffitt in Tampa where I am being treated, Dr. Jason Starr at Mayo in Jacksonville FL., Dr. Thor Halfdanarson at Mayo in Rochester Mn. These are just a few – and three of them are on the east side of the US. And other patients may also mention who they are being treated by.
Here at Mayo Jacksonville we have a monthly Support Group Meeting via. Zoom and this next month Dr. Jason Starr will be the speaker. Come, join, and ask questions. Dr Starr is very knowledgeable, and you will learn a lot. It is always the first Thursday of the month, so the next meeting will be August 7th at 5:30 PM. Here is a link that should allow you to pre-register for the meeting.
https://mchealth.zoom.us/meeting/register/wcWv-MZNTAOg_NU5Xw8jLQ
I may miss the August meeting due to travel, but hope you can join in.
I'm so sorry you're in this club but its great that you're seeking out answers. I totally agree with @tmneuro about seeing a net specialist. All 3 Mayo locations have net teams. You can find other specialists by state at
http://www.netrf.org
And
http://www.carcinoid.org
Any tumor tissue that has been removed should be tested to determine the ki67.
Nets are not graded the same as other tumors so I question the grading you were provided. General.oncologists typically don't have the required knowledge to properly treat nets or determine the proper sequencing of the nets. The fact that your doctor says that (I assume) octreptide or lanreotide is not necessary until it starts to grow tells me he is not well versed in nets. These shots can prohibit growth but don't usually shrink tumors.
With this disease its crucial to be your own best advocate and you can only do that through education. The 2 sites I listed are great resources. Another one is http://www.netcancerawareness.org.
These sites have huge libraries of videos by net specialists on a wide range of topics.
Best of luck to you!!!
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2 ReactionsThat's great info, thank you! I'll make myself a note to join the zoom and try to make it.
I'm not close to any of the Mayo clinic locations. I do have a local friend who drives to the MN one so I assume that's the closest. He didn't like the care he got here locally at diagnosis, but that was 8 years ago. Now he does a combo of going there and they arrange for him to have some stuff done here to save on traveling/expense.
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1 ReactionI've known since I got it that my grading was wrong. The A I believe stands for tumors that already exceed 4 cm(?) right? My largest one is 1.1 cm. Also, like I said they originally thought my left hilar lymph node was involved so that is marked as 1 or positive, and the biopsy was negative/benign. So that's not right either. I'm hoping with surgery next week, we will get a much more accurate pathology report that will help me move forward knowing exactly what I'm dealing with.
I think my oncologist's rationale (right or wrong) about waiting on the shots is we don't know if the smaller nodes are NETs or just random benign nodes. I doubt insurance would cover them until they are large enough to biopsy and confirm the diagnosis. (I know for sure that after the left side tested positive for NETs and the tumor on the right looked exactly the same, they still wouldn't approve any treatment until it had also been biopsied to prove it needed treatment.)
I looked at and bookmarked all 3 sites you listed. That's some great info, so thank you very much. Sadly, as I thought, there are no NETs specialists anywhere near me.
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2 ReactionsI'm sorry there's no specialists near you. Alot of net patients have to travel for their consultations. That may be something to consider, if possible. Also, some may be willing to do a video consultation, but I'm not positive about that. But it may be something to look into
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2 Reactions@ineedawhale
There are some very good NETS Specialist Drs at WashU in St. Louis. I have GI NETS Mets & go there for PRRT. I’m do agree Mayo is tops, but a really long drive for me.
https://physicians.wustl.edu/for-patients/health-insurance/
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1 ReactionHello.
The AJCC system, along with the TNM classification, is a fundamental tool for classifying and staging neuroendocrine tumors, allowing a better understanding of their behavior and facilitating therapeutic decision-making.
ki67 determines the degree of NET. G1, 2 Or 3
View Translation
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1 ReactionOoooo good to know, that's not terribly far. Thanks!
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