I am at a loss with so many mixed emotions with an element of lacking motivation.
I don't usually reach out to anyone but for the past several months I have had so many mixed emotions and thoughts that I can no longer keep hidden as well as I used to
After all the usual hospital trips, CT scans, MIR scans and all the blood done, we still don't know or have a definite answer to whether it's Lymphoma or one other possibility.
Because of all my other complex medical conditions and chronic ill health, they are unwilling to take the gamble of going to the next stage of getting a biopsy done due to the position of the growth even though it has increased in size, and getting further growths in other areas so they consider it as a risk to life or further complications. I don't know what to do, how to cope and my head is all over the place. Help, please?
Hi again Gme-70, sorry to hear that you still have not received a clear diagnosis. Unfortunately at times being able to get a biopsy can be challenging and at times very risky.
At times like these clinical teams have to make a decision based of the information available and treat as best as they can - what is your consultant saying the best way forward is?
My regular G.P and consultants have come to the conclusion and agreement that all they can do now is wait until such time when or if any further growth are discovered elsewhere where they can easily do a biopsy more safely and access is less challenging.
After my last scans and outpatient appointments, there were none detected anywhere else to do this as yet other than the ones I already have that that are Slowly progressing in size and two new areas over time and we were told that because I am now on their radar, they will keep an eye on the situation.
‘If’ this is a type of slow growing Lymphoma especially one of the many Low-grade non-Hodgkin lymphomas the approach being taken is actually normal.
I lived with my type of low grade Lymphoma for over 14 years before I needed strong treatments. Active Monitoring (Watch and Wait) is a regular approach for some lymphomas….. it’s not a great position to be it is very effective when it comes to Lymphomas.
Two of the main other reasons for their reluctance are because I have COPD with the onset of emphysema and heart issues. However, the suspected lymphoma problem was already present but not picked up until I accidentally came across the growths.
My team told us after comparing a CT Scan I had 7 years ago to a more recent scan it was already present back then so now its adding more issues on top of the ones I already have and are currently all over the place.
It’s a very fine balance when you have other health conditions…… what presents as the great urgency/Lidl is the question that has to be carefully balanced.
If it’s is a Lymphoma it’s not that unusual for it to be found when being investigated/checked for other health conditions…… that’s why it’s often refers to as the invisible cancer.
I was the opposite in that a regular CT for my Lymphoma picked up my Asbestosis.
You may want to check out the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support or just a listening ear. We also have our Cancer Nurse Team in our Ask an Expert section but do allow a few working days for a reply.
I am always around to chat more.
