Unsure of how far to push my doctor for reassurance
Hi all
After being unwell for a while and quite a few tests (abdo and pelvis ultrasound, abdo and pelvis CT, abdo and pelvis MRI, endoscopy, bloods), today I was diagnosed with Achalasia which is a disease of the lower oesophagus sphincter.
Achalasia is a rare disease (1 in 100,000). There have been a small number of cases (also rare) of breast cancer metastasis to the oesophagus presenting as Achalasia and I can't help but worry about that given my BC history.
I asked my specialist if we can definitively rule out oesophageal cancer as a cause of my Achalasia. The tests I have had so far have all focussed on the abdo and pelvis region as this was where I felt all the pain. His response was that breast cancer metastasis to the oesophagus is extremely rare and the endoscopy didn't show anything, but he will ask the radiologist to review my scans to see if they did in fact capture the oesophagus. I guess I should be comforted by this, but I'm not.
I just want some reassurance that nothing has been missed and that I am not one of the rarer ones that may have oesophageal metastasis presenting as Achalasia. I don't know how far I should push my specialist and whether I should request another MRI or CT of the oesophagus or go back and see my onc regarding my fears. As an aside I have already had numerous CT scans during my lifetime. Am I being overly paranoid?
Regardless of the cause of the Achalasia, I need surgery as it is not possible for me to eat any solid foods and I can only drink about 2 cups of water a day which is why I have lost 7 kgs in 4weeks (and not in the good way). I will have to have yearly endoscopies going forward because a diagnosis of Achalasia means I have a 30 fold increase in the risk for developing oesophageal cancer in the future if it wasn't the cause of Achalasia in the first place.
Any advice as to how I can be reassured would be appreciated. I would also welcome any information from anyone diagnosed with Achalasia or oesophageal metastasis. The surgery that has been suggested is a Heller Myotomy with a Nissen Fundoplication.
Thanks in advance.
Nadine
After being unwell for a while and quite a few tests (abdo and pelvis ultrasound, abdo and pelvis CT, abdo and pelvis MRI, endoscopy, bloods), today I was diagnosed with Achalasia which is a disease of the lower oesophagus sphincter.
Achalasia is a rare disease (1 in 100,000). There have been a small number of cases (also rare) of breast cancer metastasis to the oesophagus presenting as Achalasia and I can't help but worry about that given my BC history.
I asked my specialist if we can definitively rule out oesophageal cancer as a cause of my Achalasia. The tests I have had so far have all focussed on the abdo and pelvis region as this was where I felt all the pain. His response was that breast cancer metastasis to the oesophagus is extremely rare and the endoscopy didn't show anything, but he will ask the radiologist to review my scans to see if they did in fact capture the oesophagus. I guess I should be comforted by this, but I'm not.
I just want some reassurance that nothing has been missed and that I am not one of the rarer ones that may have oesophageal metastasis presenting as Achalasia. I don't know how far I should push my specialist and whether I should request another MRI or CT of the oesophagus or go back and see my onc regarding my fears. As an aside I have already had numerous CT scans during my lifetime. Am I being overly paranoid?
Regardless of the cause of the Achalasia, I need surgery as it is not possible for me to eat any solid foods and I can only drink about 2 cups of water a day which is why I have lost 7 kgs in 4weeks (and not in the good way). I will have to have yearly endoscopies going forward because a diagnosis of Achalasia means I have a 30 fold increase in the risk for developing oesophageal cancer in the future if it wasn't the cause of Achalasia in the first place.
Any advice as to how I can be reassured would be appreciated. I would also welcome any information from anyone diagnosed with Achalasia or oesophageal metastasis. The surgery that has been suggested is a Heller Myotomy with a Nissen Fundoplication.
Thanks in advance.
Nadine
