Two weeks ago my husband was admitted to hospital after suffering from agonising thigh pains which developed into weakness. The following morning he had an MRI scan which showed a large soft tissue mass around the cauda equina which was causing spinal compression. They also detected other areas which were suspected to be metastasic lesions. He had previously been diagnosed with stage 3 melanoma late in 2020 and was on active immunotherapy so the assumption was that this was metastatic melanoma. He was given a 5 day course of radiotherapy, fitted with a surgical brace and discharged home while we awaited the biopsy result. Last Thursday we met with the consultant to discuss the outcome. We were told that the biopsy did not reveal melanoma but that the results were instead indicative of a blood cancer, that the massing looked like “patches of acute Leukemia” and that further tests would be carried out in the histopathology lab to get more information about the cancer type. We will return to see the haematologist this Thursday to get the results and discuss treatment options,
It is all very scary, Dr Google tells me this sort of solid tumour in leukemia is rare and called a myeloid sarcoma or chloroma. We have no idea yet what this means in terms of prognosis or treatment.
Hi @Adsvms, Yes, it must be scary times for you both not knowing and perhaps wait for your husband’s Dr and not the infamous Dr Google !!
I certainly cannot help you medically and you are awaiting test results anyway so even your husband’s consultant does not know yet, but what I do know that waiting is the worst feeling and my mind goes off in all directions.
You also show so clearly how family members go through the same fears, thoughts and feelings as the patient.
Thursday is your appointment day so please do let us know how your husband gets on, we are here for you both so please keep posting.
Hi @Adsvms A warm welcome to the forum. I’m so sorry to hear what you and your husband are going through. I can only imagine how tough it all must feel right now, especially in the lead up to further consultations and awaiting more information regarding his new diagnosis.
It may be helpful to write down any questions for your husbands upcoming appointment in order for you to cover all areas of concern at this point, as it is very easy to be side tracked during such an appointment and also very difficult to retain everything at once. As @Erica has so rightly mentioned, Dr Google can at times bring some inaccurate and unwelcome information, so it may be best to hold tight until Thursdays appointment.
If you want to talk anything through at all or if there’s anything we can do to support you, we’re only a phone call away on 0808 2080 888.
Really glad you’ve found this forum - I hope that chatting things through with others who can relate and have been through similar feelings will be a source of support for you.
Best Wishes, Lauran