I just received news that my fit test was high and had detected blood and I have been referred under the 2 week cancer pathway. My platelets are lowish around 106 and red and whites at the lower end of normal.
I have had 2 x 3 polyps removed, 2.5 years ago and 5.5 years ago. 2 were adenomas, and removed.
Am a safe to undergo this procedure and should I inform my haematologist first?
They were giving me date for the scope ver the phone, but I have asked for a consultation first with a colorectal consultant to inform him of my PMF and SARCOIDOSIS diagnosis and then plan the scope. What do you think on how I should proceeded?.
Is there a link between PMF and other cancers?
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artydutch
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You absolutely should consult with your hematologist first. Your gastroenterologist should not proceed without also consulting directly with your hematologist. The doctor treating the sarcoidosis should also be consulted. You are presenting with a medically complex case that requires collaboration between providers to ensure safe and effective care.
The short answer is that yes, people with MPNs are more prone to secondary cancers. There is information about this in the literature. Suggest you discuss this with your hematologist for a case specific answer. Your genetic profile and case history have direct impact on your risk factors.
Your care team will want to do certain tests before the procedure. These will likely include prothrombin times (ptt/aptt - INR) to check your bleeding time. This is a particular concern with your thrombocytopenia. Your hematologist can best explain this as well as consult on what other testing should be done prior to the procedure. Note that if you are at increased bleeding risk, this is something that can usually be managed if the surgeon is properly prepared.
It is often necessary for us to be our own best advocates, including being our own case managers. The best way to ensure that the collaboration you need occurs is to make it happen yourself. Track that is has occurred. Participate when you can. Ask your providers what they are recommending and check whether all providers have the same understanding. Get your own copies of all written correspondence between the providers. Providing your own input in writing can be helpful at times. Once you are sure all of the providers are on the same page and assuming you are in agreement, then move forward with the procedure. It is a good idea to request a copy of the consent form in advance so that you have time to review it when you are not stressed by the impending procedure. When you are confident that everything is in order, you can be confident in a successful outcome.
Wishing you all the best as you move forward. Please do let us know how you get on.
I am glad you confirmed what I thought myself. I had to convince the triage nurse that a consultation is needed first. I got this news whilst on holiday and are back home now and have emailed my haematologist for an opinion and advice. I have me 2nd opinion on Tuesday with prof Harrison at Guys. Any advice on what to expect from a second opinion ? I am preparing my history and test results. I have asked if they wanted it sending early and this was not requested. Thanks for your sound advice, as always!
Excellent self-advocacy regarding requiring the consultation! You are absolutely correct that it is mandatory. The reality is that the triage nurse likely knows very little about MPNs and the potential impact on the surgery. We have to be our own best advocates.
If you are getting your second opinion from Dr. Harrison, I would expect a highly informed and nuanced view of your MPN and what your treatment options are. She is one of the world's leading MPN experts and appears to be as gifted in the art of healing as she is in the science of medicine. She will certainly be able to give you good advice on treating your MPN and on the impact of your MPN status on any procedure.
Wishing you all the best as you move forward. Please do let us know how you get on.
I had colon cancer got all clear 2020 then diagnosed with Essential Thrombocythaemia-never told that I could have a secondary cancer blood cancer (ET)-Recently had colonoscopy and thank goodness all is good.(Had slight anaemia before colon test and had scope earlier than was due -(which is every 4 / 5 yrs) because consultants were concerned --took iron tabs and sorted anaemia out.
Hope you get your very complicated situation sorted out and that all will be good for you.
It would be risky behaviour for a specialist to carry out any procedure on a patient without first having noted and conferred on other health conditions, medications and so on that could impact, as well as informing the patient about what to expect.
Last year I had a similar experience and was contacted by phone to set up an appointment within a couple of hours of being referred by my GP under the two week rule. Although the reason for my referral was different to yours, a procedure was involved and so the initial appointment was for a face to face consultation and detailed notes were made. The actual procedure was then arranged for a date very soon after.
Based on that and my other previous experience of nhs processes I’m very surprised you’ve gone straight from referral to scope appointment. I would contact the clinic you’ll be attending to confirm whether the appointment is for an initial consultation prior to scope.
my husband had the same 6 weeks ago. Fast tracked and straight to endo and colonoscopy. However he has no recent history of cancer but a huge stage 4 one 20 years ago that created lots of scarring. I had to persevere with the triage nurse to have an appointment first. She then offered me a ct scan. I held out for an appointment first and got one this Thursday. I know a scope is the gold standard for bowel issues and better than ct. cannot believe this is happening on top of 3 other major condition, all in the last 3 years. I have emailed my hematologist as well. Thanks for your advice!
As posted here, consultation among doctors is critical. I have pv and had knee replacement surgery last year and surgeon set platelet parameters before he would proceed. Ultimately though, you must be satisfied going forward. Wishing you the very best.
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