Consultant 90% Certain it is cancer

[Notcanceroops]

Longtime member, Name changed for privacy onDH behalf.
I wanted to share and offer hope to those waiting for diagnosis.
My DH has a mass in his neck/clavicle region. Here is his story

1. He visited his GP, they weren’t that interested, probably an infection told to return in 6 weeks. Had tiredness, night sweats. They did bloods, found low white cells, red cells, platelets (pancytopaenia) test for EBV showed evidence of past infection, misinterpreted by gp as recent infection (glandular fever).
2. Returned on my insistence at 8 weeks, after he showed me the results in nhs app and I realised he did not have any evidence of recent EBV infection and therefore no explanation for his symptoms. I was pretty sure this should have been 2 week cancer referral. More bloods, same results and ent referral.
3. Scanned, results showed mass, blood tests no change
4. booked for biopsy, dr at biopsy confirmed blood tests always showed no evidence of recent EBV. Much concern over mass that had appearance of carcinoma (postion, vascular supply etc). Booked to receive results
5. appt 10 days later with oncology: histology results not available on hospitals system (different IT systems, histology consultant not contactable). Consultant advises that even without biopsy results, is 90% certain this is lymphoma, usually good survival rates. Nurse viably sucks air in and looks sorry as we are asked about ages of our children and we discuss how we proceed.
6. we agreed that we didn’t want any news by phone (I didn’t want DH to take a call at work alone etc). Agreed a face to face appointment to be set up for following week.
7. we go home and start processing and planning: Who we will tell, when, what pans we need to look at (life insurances etc)
8. appoint arrives in post ,DH asked me to open it. It is from the chemotherapy clinic for following week.
9. Both assume we have the answer, DH booked a taxi home from work, too shaken to drive.
10. we weep and cry and reason and the. steady ourselves. Think about formally complaining if the length of time to diagnosis has effected grade and treatment options. Collect kids from school and somehow plough through the weekend
11. Visit consultant having braced ourselves. Histology results show : NO CANCER. We ask why an appointment at chemo clinic (turns out that was just consultant next available clinic)
12. we go home in absolute daze. No europhoria, just numb. Life was given back in seconds while we had spent months worrying and 2 weeks planning a life around cancer treatments and worrying about finances, emotional impact on children etc

I wanted to share for awareness, to encourage people to push for diagnosis, double check what you are told and finally, know that sometimes medics get it wrong in a very good way.

That is appalling. It should never have happened. The consultant should not have said 90% anything without seeing results. I went through cancer a long time ago and apart from a few serious faces I was not given any dire possibilities before the results were available. You should lodge a complaint, if only to prevent this happening to someone else. Hopefully your anger and frustration will ease with time. I really feel for you both.

Wow that is shocking! Im So glad your husband is ok but I would still complain.