Hi everyone. I am 42. After going through treatment for a different type of cancer, 6 months later my haemoglobin didn’t recover after chemo and I am transfusion dependent. I am having a bone marrow biopsy to see what it is and am terrified of Myelodysplastic syndrome (MDS). Haematologist said blood film didn’t particularly show abnormalities but clearly I am not making red blood cells. Platelets ok and Neuts 1.4. I wonder if anyone has any crumbs of comfort. After surviving one cancer am I heading for another? Is there hope? Thanks so much, Lizzy
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Hi @Lizzy123 I am so glad that you have found us, you certainly have gone though a lot recently, I would think it has been very scary for you.
The haematologist seems to be doing their fact finding tests to rule conditions in or out.
Perhaps as long as they know your whole medical history that is all you can do and I reckon that waiting is the hardest part.
In the meantime I find it helps me to write down my fears, questions and practicalities for my next consultation.
I have had 2 suspected cancers, that turned out not to be cancers, and 2 cancers,
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and I have had skin cancer twice.
Other things that you can do is to be kind to yourself, really look after yourself and please do keep posting and perhaps try and resist the ‘Googling’
Dear @Lizzy123,
Welcome to our forum, I am glad you found us! I am sure members of our community will be able to share their lived experience with you.
I am sorry to read what you have gone through. I am glad you are now under the care of a Haematologist who is doing all the right investigations. Chemotherapy of any kind will have a significant effect on the blood cells and occasionally these effects can last longer term. The bone marrow results will give a very clear picture of what is going on and I would encourage you not to google too much and just take one step at a time. I am very aware this is easier said than done.
If it would help you to talk things through we would be very happy to do this, our phoneline is open and you can reach us on 0808 208 0888.
Best Wishes,
Heidi J (Support Services Nurse)
Thank you for your kind words Erica and sharing your story as well. As you say, the waiting is the hardest part! I am trying to prepare myself for all scenarios so it’s not as much a shock when the results come in, but possibly the googling isn’t helping. I guess it’s human nature to try to convince ourselves the outcome won’t be too bad, but not sure the googling is doing that!
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Thanks so much Heidi. Can I ask if you recommend that I should be sedated for my biopsy? After lots of surgery I get quite anxious at procedures now, but not sure if this is something they would consider?
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Hi @Lizzy123,
This is not an uncommon request and worth having a chat with your hospital about. Have they sent you any information about the biopsy itself? Hospitals do differ in what they offer for these procedures for example in my local experience we would offer gas and air during the biopsy, sedation would be considered depending on individual circumstance. If you have a contact for the department doing the biopsy I would recommend reaching out and asking what your options are.
They will use local anaesthetic to the area so although it may still be uncomfortable they will try their best to make you as numb as possible.
Best Wishes,
Heidi J (Support Services Nurse)
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