Forum Discussion
Trying to remember the whole one step at a time mantra
The last few weeks I have had to tell myself to take a breath and take one step at a time. My 50th birthday was a complete bust. Ended up in an ambulance with a trip to hospital and not from anything fun. Missed out on having any bubbly, due to severe stomach pain after a few weeks of having problems swallowing foods and liquids - something I had initially put down to reflux. But the pain was unbearable, worse than childbirth. So tests, tests, and more tests and lots of pain meds. Then biopsies of the duodenum (small intestine) after CT scan picked up significant thickening in sections 1, 3 and 4. Problems with the procedure meant the doctor could only get biopsy from section 1 of the duodenum. So now MRI, Barium swallow and other tests this Friday and next Monday.
Gastro doc suggested that having HER2 positive breast cancer meant there was an increased risk of bowel cancer. Has anyone else heard this? Fingers crossed the thickening is something like inflammatory bowel disease instead of the big C. On the upside, I've lost 4.5 kgs in 2 weeks. Pathology from the first sample won't be ready until Friday, so now I'm playing the waiting game while enjoying a liquid only diet. Forgot how horrible the waiting game is.
Hope everyone is doing ok.
Nadine
Gastro doc suggested that having HER2 positive breast cancer meant there was an increased risk of bowel cancer. Has anyone else heard this? Fingers crossed the thickening is something like inflammatory bowel disease instead of the big C. On the upside, I've lost 4.5 kgs in 2 weeks. Pathology from the first sample won't be ready until Friday, so now I'm playing the waiting game while enjoying a liquid only diet. Forgot how horrible the waiting game is.
Hope everyone is doing ok.
Nadine
27 Replies
- FFS absolutely. Are you a one thing at a time person or all in one? I'd be very tempted to organise both the scans for the same week so as to get scanxiety over and done with in one time frame.
Well done for trying to stay positive, but good on you for having a good cry and rage against the universe. I admire your poise and equanimity in the face of another setback. And thank goodness it's not cancer. K xox - All, thanks for your thoughts.
@Zoffiel Thanx Marg. Though it's not a side effect. I'm just unlucky to have a totally different disease.
@Sister @LMK74 There are two types of surgeries that treat Achalasia. They also treat it with botox and balloon dilations but reserve these for people too frail for surgery as these treatments don't last. The surgery I will have is a Heller Myotomy with a fundoplication. Basically they will cut the oesophageal muscles and the lower oesphageal sphincter to open it permanently to allow the food through. Because this will mean stomach acid can come back up whenever I bend over or lie down, they will have to wrap the top section of my stomach around my oesophagus (the fundoplication part). This is the standard treatment for my type and grade of Achalasia. If I don't have the surgery the condition advances and when it gets to type four they have to remove the entire oesophagus.
This disease is apparently rare 1 in 100,000. I have already been referred to an online support group, and they have been truly wonderful. And there is lots of information on google. I spent Friday in tears having my own private pity fest party after the third doctor told me I absolutely have to have this surgery and how serious it was. From my medical history it looks like I had Achalasia before my BC was detected, it's only that it has now advanced to a stage where it is can be diagnosed. I was told that the first surgery that will be done laparoscopically doesn't always take and follow up surgeries are often required. I was also told that because this disease also increases the risk of oesophageal cancer by 30 times, I will also have to have regular endoscopies. Why not just add these to my yearly mammograms and ultrasounds. Trying to stay positive. At least it won't kill me, but FFS......
@primek thanks for the link. The thickening on the scans ended up being inflammation. My over extended oesophagus had made everything inflamed. So I am super glad, at least it is not the big C. - Dear @Nadi,
and - @nadi How awful for you. What is the surgery that may not help? Are there any groups that you can access to help you get through?
- Oh FFS Nadi how awful for you. I really hope surgery can help a little.
As to her2 and bowel cancer risk.
No...I've heard nothing specific to her2.
But if you have a specific gene (i cant recall which but not brac or 2) you have an increased risk of bowel and pancreatic cancer. There is one with soft tissue cancers. All the mutations mean are increased risk, not which type.
This link is helpful...if it doesn't freak you out.
https://www.breastcancer.org/risk/factors/genetics - It breaks my heart to hear this @nadi . We come here hoping for support as travel through the regular trials of cancer treatment, to know one of our own has fallen foul of some unexpected side effect is very sad. I'm thinking of you tonight. Marg xxx
- Message sent, @Nadi - We are all feeling for your plight, BIG time :(
- @Nadi! You poor thing! Honestly, when life piles steaming turds on piles of steaming turds it's hard to credit it... Still, you're still here and kicking, and svelte, so that's gotta count for something. Wishing you all the absolute best. K xox
- My god @Nadi, all that sounds extremely unpleasant and you are still trying to keep positive. Will having surgery help at all ? . Its gotta be horrible only being able to have liquids.
- Nadi that sounds horrendous but then doctors don't know everything. I would search for a non-flaky alternative. I have often had a doctor tell me to go home and let something heal itself. I then marched straight to my cranial osteopath who fixed me everytime. Non-flaky is the key though. There are a lot of whackos out there. Listentoyourgut.com has some good ideas to start with. Wishing you the best. Love Melody
