Unsure of how far to push my doctor for reassurance
Nadi
Member Posts: 619 ✭
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
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Comments
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I don't have any answers for you, Nadine but thinking of you. This is tough enough to deal with without unknowns.0
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Hey @Nadi, so sorry to hear about yr new diagnosis. I would definitely seek a second opinion for your own peace of mind, either another gastric specialist or your oncologist for a review of your scans.
Two of my children have special needs, one of them with a rare condition and I have learnt the hard way that doctors aren’t infallible and now I question absolutely everything and if I don’t feel a specialist is listening to me or understanding where I am coming from, I change doctors.0 -
Absolutely push for answers and go get second or even third opinions if you want to. This is your body you do what feels right. If your gut instinct is telling you to go get it checked again do it xxx0
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If you need reassurance and it won't cause any harm to get it, insist. Your body, your rights. You need to sleep as well as you can at night and if you need more info that's perfectly understandable. You've gone through the wringer and now you're going through it again you poor love! Whether or not you're being paranoid is neither here nor there. If you're worried about something, you're worried. A good doctor will understand. K xox
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I don't think a scan is the solution but a biopsy by endoscope. I completely understand your concern. This would be done by your GI specislist anyway I'd imagibe and review would be very soon given your weight loss. Keep on his back. You are not being paranoid just sensible as you want the correct treatment.
Hope all goes well for you. It really sounds like a bugger of a thing and so bloody annoying to now have to deal with this. If I recall correctly it has taken them a while to figure this out.
Please keep us up to date. Kath x3
