... not going to be given any treatment until I become really ill and need it. I don't understand why I've been told this as other people are saying they are in remission. Can someone please explain all this to me. I'd be most grateful thank you. I tried to ask my consultant but he walked back out of the room
Often if someone does not have symptoms they don't treat as they haven't seen a benefit to early intervention. If symptoms occur then it's treated. Did he tell you what grade it is? This would be a number and possibly a letter.
I am disturbed by the behavior of the consultant. No one should be brushed off like that if they have questions.
I too have Follicular Lymphoma but I was stage 3 (lymph nodes on both sides of my diaphragm were swollen) and was having extreme pain (not a usual symptom), nausea, vomiting and diarrhea. It took them 4 months to diagnosis, but within a month I was on Chemo (R-CVP). What they mean by "no cure" is because it is a blood cancer. The defective cells are actually produced from our own bone marrow and move in to the blood stream where they can begin to clog up your lymph nodes. Don't panic! They thought I had it in 2007 when I still lived in Florida and I was fine until November 2012. What remission means is that they have cleared the body of the disease "for the time being" (I call it putting it to bed or sleep) because one day your body will start reproducing the defective cells and the cancer will come back. I've been told when mine comes back they may not give me treatment then as I'll be near my "lifetime" dose of the Rituximab (The R in R-CVP chemo). because after the first 6 cycles of R-CVP they put people on a TWO YEAR maintenance treatment of Rituximab every two months. Once you've had this set up you can be in remission for anywhere between 5 and 19 years. I am lucky that I had moved back to my birth country of Scotland before the diagnosis as midway through treatment you get a CT scan to check the progress and after the 6th cycle (before starting maintenance) you get another CT scan. My first treatment had me in the hospital from 9am to after 5pm as they have to check your body's reaction to the drugs. Some people react and have to stay overnight. After that it averages about a 4hour day in the hospital or cancer centre for each of the rest of the treatments. Which can be very costly if you are where you have to pay for medical treatment. The treatment itself can make you very tired and cause achy muscles and joints, among many other possible symptoms but they do give you medicines to help control every symptom they can-apart from fatigue, nothing for that yet. All of this makes everyday living, including working, very difficult for some people. Some continue to work for the distraction it gives, but the treatment makes your immune system low and a cold can mean an early death or weeks in the hospital and delayed treatment. Your also restricted on foods you can eat while undergoing treatment due to bacteria risks. The steroids generally given with it can cause weight change which can require a new wardrobe of clothing (more costs).
I do not condone what your consultant did, that was highly inappropriate walking out, but I do hope you have a better understanding of the difference between cure and remission and why the doctor was wanting to wait to give you treatment. Check out the Lymphoma Society (Or Association-whatever the one in your area goes by) online as they can mail/post you free info sheets and booklets on the Lymphoma, it's treatments and the "wait and see" approach that your doctor is taking (which is quite common). When you get the info, do yourself a favour and only read what you can, when you can. It won't do you any good to stress out and try and read everything at once. Your body and brain have had a shock, so you won't process everything as quickly. Read one or part of one, then put it away and come back to it and re-read it. You will be more likely to retain the information so that you can become a "partner" in your treatment rather than just a patient. Doctor's have secretary's a lot of the time, so call them and ask questions, they should get back to you with what the doctor says, especially if he's so quick to leave the room. Keep in mind too that they are always making medical advancements. Rituximab is a recent drug, and they've discovered in a clinical study another drug that makes it more effective (however that drug isn't available over here yet).
Most importantly, remember to breath out and that there is solid ground underneath you. I do this a lot when I start to stress and panic, stick my feet firmly on the ground and take a big breath that I let out slowly.
I wish you all the best with your journey through cancer.
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