Profile

bettebette

Regular user
Female
ABOUT ME

I was found to have colon cancer in February 2017 after a 55+ Sigmoidoscopy screening, I had been feeling out of sorts for quite some time and particularly ill over the 2016 Christmas period, and had been fobbed off by my GP as having piles (no examination!) and the symptoms being my age.

Listed for a resection mid-March, I was admitted for an emergency resection in early March because my bowel was blocked. I had a high anterior resection; I was diagnosed as T4bN0M0G2 with emvi involvement - better news was to follow when a second opinion with regard to chemotherapy revised the T to T3b (however my local hospital has not acknowledged or accepted this revision)

My local hospital wanted mop-up chemo because of the emvi, but because I have chronic allergic asthma it was decided (with the help of the second opinion from Tim Rockwell in Surrey) that the risk outweigh the possible advantages. My instinct was not to have the chemo and so I was very happy with that decision - and even more so because I didn’t really have to make it.

I felt so much better after my operation and I was raring to go for some weeks, strangely my cea did not decrease and remains elevated at 28 along with high calcium (both usually indicators that some cancer remains/reoccurrence)
The hypercalcemia has caused many strange problems and has resulted in a skinny Bette.

Several scans later (nine in total!) it was concluded that there was no evidence of metatastic disease ( Oct 2018 ) and a possibility that the elevated cea could be due to my lung problems:

www.aspergillus.org.uk/...gic-bronchopulmonaryaspergillosis-

The thoracic specialist at Heartlands in Birmingham does not agree!

However, other blood tests suggest I have hyperparathyroidism (seen in two nuclear scans) and a small growth on my thyroid (I am waiting for the CT scan result on the thyroid/ Dec 18 )

I have a date for the parathyroidectomy, the calcium will be checked right away post-op and again after 6 weeks - along with the all important cea. All being well they will have reduced but if not then the cycle of scans etc will continue.

I had two parathyroid glands removed on Jan 3rd. 2019 and the calcium dropped within 6 hours, which is what we were hoping for; now to wait another month to re-test the blood calcium and the cea.

I am very aware of how fortunate I am in relation to the many good people on this forum.

13th. Feb. 2019:
My wretched cea has risen to 31 despite the calcium and parathyroid histology being clear and hormone levels both levelling off to normal.

9th. April. 2019:
Liver MRI all clear.
CT scan no evidence of metatastic disease! Bizarrely the blood tests are still ‘not quite right’ so the results are being sent to a haematologist to have a look at; however overall very good news!

I am to have an endoscopy and an appointment with a haematologist just to see if they can work out what’s going on with my blood results.

13th. May. 2019:
Endoscopy all clear!

6th. June. 2019:
Cea @ 33
plan is another colonoscopy and another PET scan. PET scan done on 15th. June. waiting for results.
Haematologist sending bloods for further genetic testing, not quite sure what they are looking for/at - two to three months for results.

25th.June. 2019:
PET scan shows “no obvious metatastic disease”, the lung experts are going to have a look at it now (there seems to be no explanation for the rising cea)
Good news 😊

August. 2019:
Thoracic (lung) MDT meeting happy that inflammation is not cancer. Phew!

5th. September. 2019:
Repeat colonoscopy clear!

Oct. 2019:
Cea has dropped to 25, not sure of the significance of this (since I have a very bad chest currently and have been in hospital, would seem to contradict the lung disease theory) 🤔
Overall surely a good thing (or totally irrelevant)? 🤷🏻‍♀️

Nov. 1st. 2019:
clear ultrasound scan/pelvis/transvaginal.
😊

Despite 12 scans (9 clear ones) and a clear colonoscopy it has been decided - after a gastroenterology appointment - that an investigative laparoscopy would be a good idea 😳 The date is set for December 2019.

December 2nd. 2019:
Laparoscopy done, no signs of any metatastic growth, scar tissue divided and two staples removed from previously resected area.
Very pleased with the news.

January 2020:
I am to have a ‘dummy run’ with a capsule camera on 6.1.20
(to make sure the capsule can pass through!) All being well the actual capsule camera, which proceeds through the system - including the small bowel - filming as it goes, will be done before the end of the month.

Date for camera endoscopy set
3rd. February. 2020:
The dummy run was fine but a chest infection the week before the date for the real thing means it has been postponed until I see the thoracic team on Monday 10th Feb. I am also to have some pulmonary function tests.

10th Feb 2020:
I have been to the thoracic clinic today and they requested an :x:-Ray and CT scan apparently they just want to check my lungs coupled with some bloods/ inflammation markers to see if the wretched cea can be tied to allergies/chest inflammation.

30th April 2020:
After an extended wait (due to the Covid-19 situation) I have my chest CT results - the lesions and inflammation are thought be be Aspergillosis- not cancer!

Small bowel Capcam also found nothing untoward 🙂

Still no answer about the cea but certainly seems to be steps in the right direction.

September 2020:
Sigmoidoscopy re-booked for 13th.Sept. 20 🤞 Sigmoidoscopy done and Dr, is happy but has taken some biopsies of colon and rectum to make sure 🙂 🤞
October 2020:
Biopsies all clear! 😊

November 2020:
Blood tests thrown up a few things including elevated CA-125 (no idea why that one was taken)

10th Dec 2020 - another CT scan
waiting for results 😐

Jan 2021:
Results - NE (metastatic) D 🙂
CEA 23 and CA-125 still at 54 🤔

An interesting document concerning CEA:
www.exeterlaboratory.com/test/carcinoembryonic-antigen-cea/

Fodmaps diet: www.bbc.co.uk/food/articles/what_is_a_fodmap_diet