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I am supposed to going the route of lumpectomy and sentinal node removal for a type 1 early ER/PR+ 5B5 breadt cancer. I will meet with an anesthesiologist, but he/she won't be tbe one in the operating theatre. The facility has lost my records, already, once. I cannot help but to feel unsafe in this scenario. The surgeon, who isn't an oncologist, has inasmuch stated he isn't concerned with issues of past medical history. I have antiphospolipid syndrome with an anticardiolipin antibiody and an anti lupus antibody. This condition goes in and out of remission like leukemia and causes blood to thicken, clot, quickly. I spent five years on warfarin before the doctors in the US placed me on aspirin. I have had to stop the aspirin, and this is a concern for ne because the NHS immunologist ran ine set of bloodwork, it was normal, and therefore, assumes there is no syndrome to worry about. This doesn't go away. I have been hospitalized several times for clots and I had a TIA at age 34. Post op I wasn't needing Tamoxifen. Now, this is highly possible. How can I get a straight answer from someone who cares?
Shouting out to an experts.
Hi cici196021 welcome to the forum and sorry to hear about all the problems that you are having.
Does the facility that has lost your records have a PALS team as they can maybe help you to make a complaint about the loss of records as this does sound wrong and I can understand why that would make you anxious and feel unsafe.
In respect of the conditions that you have I would suggest that you maybe give Macmillan a call and see if you can have a chat with one of their Specialist Nurses who will be able to offer more medical help that any of us can. They are contactable on 08088080000.
In respect of the Tamoxifen I can only tell you what I have been told about me and Tamoxifen but would be relevant to you as well. I had a blood clot many years ago about 40 years to be exact, and I recently was seen by the Oncologists re Tamoxifen as I can't tolerate Letrozole. Because of the blood clot all those years ago Tamoxifen is a definite no no for me based on that alone so Im wondering if you may like to ask further about this as well with your history?
Meantime Im sending some hugs your way for now.x
What is a Community Champion?
Thank you for your reply, and yes I have approached PALS and Avonet. It's okay to have them aware and the medical records dept has put it forward for investigation. I have my arm band from the admission and they know that I was there, but I have had one wrongful diagnostic exam after another because not one clinician's notes are available. My second opinion is by a colleague of the first which is a biased opinion at best. This is no little thing considering I never gave consent for any biopsy because I was less than 36 out of having anesthesia from a colonoscopy that was suppose to be an gastric endoscopy. I thank God my GP took care of that mistake and my initial complaint has resolved. However, to be handed a histology report with no name DOB or NHS identification on it, tbe report coukd be anyone's.
Starting from scratch, a 2nd biopsy is out. The radiologist removed all but 2mm of what was there. They couldn't see it on CT even with the marker. A PET scan would show what is going on, but I am talking to the wall when I ask about this. I am suppose to have an advocate, but I haven't heard from her since the GP requested a 2nd opinion. The GP is leaving next month and the damage is done with trust. I am my partner's primary carer. We have been together ten years, and I am on my own with any post operative care. He can do some things, but suffers PTSD and severe panick attacks. There's no nursing care standards when it comes to discharge preparation. He, now, has no idea what to do either.
Blood clots, well, my past history is no hormones, especially estrogenic. I was told Iwould have to ride out menopause without them. I was blessed with no menopausal symptoms so it never became an issue. When I talk to the general surgeon, it isn't his concern. He just does the surgery and passes me to an oncologist THEN. Then happens to be a month post op. The entire situation is as risky as a mine field.
Thanks for the pointers. Pray you are well.
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