Possible neuroendocrine cancer… handhold

[HelloAutumn99]

Just need to vent
32 years old, 2 young children.
Not felt right since I had my daughter 3 years ago.
After 12 different referrals for different doctors I was sent to endocrinology. I had my follow up today after my initial tests and she wants to investigate the possibility of me having a NETS cancer.
My world has fell apart.

All but impossible to put on weight with NETs cancers due to the debilitating and constant diarrhoea pretty much post consuming anything. The consultant will simply be ruling this out. A 5 stone weight gain pretty much rules it out anyway

I’ve family members who have had NETS. I’m sorry you’re going through this OP. But the good news is that NETS are very treatable. Often they can be removed, and you can have a monthly injection with very short term side effects (like an upset tummy) that keep others that may be too small to operate on stable. Sending you a hand hold.

A 5 stone weight gain would be a rare presentation for any kind of cancer let alone NETS. I would not worry in your shoes about this. I hope you manage to get some closure on why you’ve been feeling like this soon. Good luck @HelloAutumn99

@HelloAutumn99 hi OP

How was your weekend? Did you find anything to distract you? How are your symptoms now and when do you next see your consultant? I’m sure you’re run ragged with your little ones, my girls are 7 and 4 and I feel like I don’t stop for a minute on the weekends!

If you have put on 5 stone in a short period of time then you are likely morbidly obese. That will likely account for a lot of the symptoms you list @HelloAutumn99 .

To put on this amount of weight with any cancer would be atypical. To put on this amount of weight with NET cancers would be basically impossible given the body essentially can’t absorb anything and gets rid of anything in the most violent of diarrhoeas

She hasn’t put on 3 stone from her usual weight, but 3 stone. Without knowing her height this is not possible to say. At 14 stone I am not morbidly obese, just overweight!

But to go from 9 stone to 14 stone in a short period of time is going to make anyone feel shit. And given shitting anything and everything out - very very strange

Whilst I dont want to worry you, I think you are ready to find out what's wrong with you, so I am going to throw something out there. I am not a Dr. And this may all be nothing. But below is an idea that may be of use to you.

The only other person I know with similar symptoms had medullary thyroid cancer. Has anyone mentioned this? The test is a calcitonin blood test and when they draw the blood it usually has to be put on ice.

Its rare and usually very slow growing and very few doctors consider it.

The larger than normal amounts of calcitonin cause the diarrhoea. The flushing also seems to be a feature.

You can have a familial disease MEN, and MTC is a feature. How are your parents and their siblings and parents?

Of course I may be way off the mark, but if they are considering a NET (which MTC is) i would want a calcitonin blood test done for sure.

Whatever it is I hope you get the answers you need.

What on earth would possess you to contribute this to a very anxious poster that you don’t know. And I will take a wild guess you aren’t close to being a medical professional

Have you considered MCAS? I had very similar symptoms to these before being diagnosed

I’m posting this to give you an alternative outcome, not to invalidate your concerns or how you are feeling OP because I can understand how distressed and frightened you are right now. I was diagnosed with ovarian cancer in my late 20s. I had major surgery, was thankfully able to keep one ovary, and was monitored closely for 5 years. During that time, one of my scans showed that a mass had developed on my remaining ovary. Coincidentally, my treating doctor was presenting my case at that time at a conference, and he included that recent finding which was discussed at the conference and everyone there was adamant that it would be another cancer. I had surgery and it was a complex cyst, completely benign. My doctor was very surprised, he said he was certain that it would be another cancerous tumour. Thankfully he didn’t tell me about the conference or his preliminary diagnosis until after the surgery and when the pathology was back. I truly hope for you that your doctor is wrong and that there is another far less serious cause of your health concerns. However, I know what it is like to be of the cusp of a serious diagnosis, and the fear and distress that brings with it. Sending virtual hugs and hand holds. I wish you all the very best xx

Thanks for the messages over the weekend. unfortunately I was admitted to hospital with another bout of severe bacterial tonsillitis. Another one of my symptoms is dreadful infections. My throat was so closed I couldn’t swallow my saliva. The hospital was great and treated me very well but unfortunately I’ve had to have my urine and bloods for today cancelled. They have rescheduled it for next week depending on how I’m feeling

You are in hospital as an inpatient for tonsillitis?

It is not unusual for a severe case to require inpatient hospital admission. If it is impossible for patients to swallow liquids, saliva, or food they can become severely dehydrated so they are admitted for IV fluids and IV pain management.

Happened to me when I couldn’t swallow any medication - needed IV access for antibiotics.

OP, I’m sorry you’re so unwell and hope you can get those tests rescheduled soon.