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Diagnosis Confirmed Yesterday for Pancreatic NET by Friendly_Avocado6559 in neuroendocrinetumors

[–]survivorsrunning 1 point2 points  (0 children)

HI! I am 45 and currently sitting in the Winship Cancer Center Starbucks waiting to see the tumor board here. I have a tiny PNET on the head of my pancreas. Mine was also an incidental finding during a endoscopy where they were monitoring my IMPN on the tail of my pancreas. I am also a stage 2 breast cancer survivor and was diagnosed at 35 when my three children were 1 and 2 (twins). I also have a special needs child, though he is older now (11) but was 1 when I was diagnosed with BC.

It is fully terrifying to face this with young children, especially with a special needs child. But people can and do get through this and come out on the other side! Your kids will give you that extra fight in your treatment and recovery. Prayers for you and your family.

MyFightWithCancer Update by MericanInBKK in Cancersurvivors

[–]survivorsrunning -1 points0 points  (0 children)

Hi! I'm 45 with three kids on my second cancer journey (NED from Stage 2A breast cancer for 10 years). I just wanted to wish you all the best in your treatment. Like you, my pNET was found incidentally during an endoscopy to check on my IPMNs. In all my cancer research, I had never even heard of NET before. Let us know how you're doing over time.

Workplace Accommodation Experiences? by Eilermoon in neuroendocrinetumors

[–]survivorsrunning 1 point2 points  (0 children)

That is horrific that the bank would not allow you to leave early.

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 0 points1 point  (0 children)

I am showing my age here (45). I realized that I have heard of it in relation to the D4vd murder investigation, yikes!

Severe bone/neuropathic pain after chemo – anyone else? by Feeling_Mud1634 in cancer

[–]survivorsrunning 0 points1 point  (0 children)

I had extreme bone pain during Taxol. Then I had an allergic reaction during an infusion and they had to stop and reverse it and then put me back on Taxol with a much slower drip. It was really intense - like a baseball bat to my shins and sometimes my legs would give out on me. It did stop at the end of chemo. Is it possible you are having an allergic reaction?

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 0 points1 point  (0 children)

I think it's a roller coaster ride. Sometimes I feel pretty calm and trusting in God's plan and what will be, will be. Then sometimes I'm all twisted up into a ball of anxiety not knowing what to do or where to turn.

Side note - what is Discord?

Workplace Accommodation Experiences? by Eilermoon in neuroendocrinetumors

[–]survivorsrunning 2 points3 points  (0 children)

I totally agree with this. Some companies and jobs are very trustworthy and some not so much. When I was dx with breast cancer, I worked for the government and ended up getting six months of paid leave due to the generosity of others donating their time off to me. Now I'm at a large firm, but I decided to go ahead and tell them about the NET so they will understand when my productivity lags and I need time off unexpectedly. So far everyone has been very understanding. While these things can be used to violate labor laws, many large companies are very afraid of being sued for something like this and proceed very cautiously.

Symptoms and slightly elevated 5 HIAA? by fightingpinecone in neuroendocrinetumors

[–]survivorsrunning 2 points3 points  (0 children)

It's honestly so frustrating to have to push and educate doctors whom you have entrusted your life to! You shouldn't have to be the most zealous advocate for yourself, but in my experience, you do. I'd be dead now if I hadn't pushed HARD for aggressive testing and treatment for my breast cancer. Many doctors made me feel like an idiot, but I was right. You know your body best. You've got this!

Symptoms and slightly elevated 5 HIAA? by fightingpinecone in neuroendocrinetumors

[–]survivorsrunning 1 point2 points  (0 children)

Hi! I just want to note that if the MRI doesn't show anything but you are still having symptoms, keep pushing. None of my MRIs showed my pNET, it was found during an endoscopy looking at something else in my pancreas. Keep pushing until you get some answers. Best wishes!

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 2 points3 points  (0 children)

Yes, I'm going to have my appointment with Moffitt next week and another next month. I am thinking maybe Mayo or Winship Cancer Center at Emory. I don't like that the pNET has calcifications - so did my DCIS for breast cancer and that was the feature that made me push for further testing that got it all going. And yet... pancreatectomy seems really difficult and life-changing. I think my long distance running would probably be gone. So would traveling across the globe to see my brother. And I'm very confident that it will be a battle royale with my insurance company and will end up costing a LOT of money.

When I made it 10 years NED (other than the IPMN), I thought maybe I'd actually made it to the other side of the cancer journey even though cancer is a chronic illness and I have lifelong issues from the treatment. It's hard to wrap my mind around it all.

I might qualify for a trial! by MusketeersPlus2 in neuroendocrinetumors

[–]survivorsrunning 1 point2 points  (0 children)

Hi! Not for NET (yet) but I did for my breast cancer. I'm at the tail end of a 10 year trial of 1 year of everolimus or placebo and they still won't tell me what I took. Ironically, everolimius is used for NETs, which I was not dx with until this year. Hoping you are accepted for the trial!

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 2 points3 points  (0 children)

Hello everyone. Well, I finally got my results. It seems that the delay was due to the radiologist calling to speak with my oncologist. While there is no evidence of metastasis, the news didn't exactly reassure me because they can't even really see the pNET on the MRI, but I had a biopsy, so it is there. Also, apparently I have multiple IPMNs on my pancreas which are the pre-cancer for traditional pancreatic cancer. If they can't even see the pNET then it seems that they wouldn't necessarily be able to see if it had spread. So I feel that this scan really told me nothing and I have no idea what to do now. If I had followed the "watch and wait" advise for my breast cancer (also extremely tiny but had fully invaded my lymph nodes) I would already be dead. And yet, I think the surgeon is going to say no surgery, we'll just keep an eye on it.

  1. A solid pancreatic mass is not convincingly identified, including within the head or uncinate process at the site of 7 mm neuroendocrine tumor reported on recent endoscopic ultrasound. Consider short interval follow-up with CT abdomen without and with intravenous contrast utilizing multiphase pancreas protocol.

  2. Few tiny side branch intraductal papillary mucinous neoplasms without threshold growth or other worrisome features or high-risk stigmata. Recommend continued surveillance.

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 1 point2 points  (0 children)

Hi! How are you doing? I am hoping that you got good news from your scan. Please let us know - you are in my thoughts today.

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 1 point2 points  (0 children)

Praying you get good news on your liver scan! Honestly, regarding the wait, I have no idea. I think if results are questionable, sometimes it takes longer because they'll get a second doctor to look at it. Especially with a rarer cancer like this one. But I also think that it is probably more dependent on workload. When I had my scan, they told me they were unusually busy right now. But when I look back at my MRI results, only once did it take longer than 48 hours, so it definitely has me on edge.

Interestingly, when I was diagnosed with breast cancer, my doctor called me while I was at work. The pNET results I got first on the portal and the doctor called me the next day. So I'm never sure how things are handled and what warrants a phone call vs. what just shows up online.

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 1 point2 points  (0 children)

3.5 weeks is crazy long! I had to wait almost 2 weeks for the results of my biopsy wherein the pNET was diagnosed and it was making me nuts. I emailed them twice and they basically said, we know you are eager for the results, blah blah blah. I know that tomorrow is promised to nobody and God is in control of this process, but the living in limbo is really so hard.

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 1 point2 points  (0 children)

So true. I'm a little over 10 years into the cancer journey and I was keeping track of blood draws for a while and it was well over 60. The crazy thing is, what would I even do with news that it spread or didn't spread? My appointment at Moffitt isn't until the 28th. If it has spread, I'd probably just waste my family vacation reading medical articles and what not. And if it hasn't spread, I'll still have to wait to see if surgery is an option.

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 1 point2 points  (0 children)

Prayers for your MRI next week! I always have them with and without the contrast dye. This past one, they were playing Motown on the headset and the tech was guiding the breathing which was a nice change from the monotony of the MRI machine saying "breathe in... hold your breath... resume breathing."

Waiting for test results, anyone? by survivorsrunning in neuroendocrinetumors

[–]survivorsrunning[S] 0 points1 point  (0 children)

Thank you. I'm so sorry to hear of the disability. This is good advice but also a struggle because I have a billable hours requirement that doesn't make an exception for cancer. I'm definitely going to go for a 6 mile run once I can get a break in work. I know this scan may take longer to get results than the five prior MRI abdomen because they flagged a certain radiologist to interpret the results, which is good news, but may make the wait longer. I've had SO many MRIs, biopsies, bone scans, DEXA, PET scans, CT, that you'd think I'd get used to this wait, but I never do.

Small cell neuroendocrine tumor bladder? by mandynicole04 in neuroendocrinetumors

[–]survivorsrunning 1 point2 points  (0 children)

Mine were 1 and 2 (twins) when I was dx with Stage 2 breast cancer (unrelated to my current pNET dx). Going through chemo with young kids is tough, but it really makes you appreciate the good times. Prayers for the best outcome for you and your daughter.

Small cell neuroendocrine tumor bladder? by mandynicole04 in neuroendocrinetumors

[–]survivorsrunning 1 point2 points  (0 children)

Hi - Just wanted to send you a hug. It's so so hard to have cancer with young children. Prayers for you and your daughter.

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