The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly.
- Buddha
Coming to terms with having incurable cancer was pretty hard. I doubt that will come as a surprise. I was put forward for a clinical trial. As I have triple negative breast cancer, this means that drugs such as Herceptin and Tamoxifen don't work. Researchers are now looking more closely at triple negative cancer. As it affects roughly only 15% of breast cancer sufferers it has not been as well researched as others, which is understandable. For women who may be diagnosed with this rarer form of breast cancer I would recommend finding out as much as you can about it and using your knowledge to take more control of your illness. I pray that I can survive long enough for them to come up with a wonder drug for my type of cancer. In the meantime I will continue to take chemo. Anyway, I was put onto Carboplatin, a chemo commonly used to treat primary lung cancer but recently discovered to work effectively on secondary or metastatic triple negative lung cancer. I was willing to try anything. The other bonus was that this chemo didn't result in hair loss. The side effects generally seemed a lot less brutal than my first chemo. I was fairly open minded. Despite having a significant tumour in my breast the main priority was dealing with the lung lesions. I started my second chemo in late October. As I had been told, it was indeed less debilitating. I had side effects but they were tolerable. The only problem was that my white blood cell count and my platelets were slow to recover and my 3 weekly cycles were regularly delayed. This of course caused stress. After 3 treatments I was due a scan to see how effective the treatments were. I went for my scan on Christmas eve. I then waited and worried until Jan 3rd for the results. I tried to take on board my specialist nurses advice, which was to live one day at a time. When she first said this back in October I remember thinking that I had no idea of how to do that. I am now better at it and believe it or not it is actually a very liberating feeling and definitely something that we could all benefit from. However, I would be lying to say that I don't worry prior to scan results. On the day of the results I was tired from lack of sleep and my mind took me to all sorts of dark places. I was being seen at 2 pm and it made for a very long day. Waiting to be called was painful and following the doctor into the consultation room felt like a very long walk. As always I was trying to discern the news from her body language. She didn't beat about the bush and basically told me that the news was not the best. I felt sick. In the space of 5 seconds I had myself dead and buried. I'm sure I will go through such emotions again. The news was not as bad as I had mentally prepared for. Unusually, the scan had shown that my lung lesions had not changed (this is considered good, shrinkage even better) however, the tumour in my breast had grown. While this was not a common finding, it was not unheard of. Strange as it may sound I was pretty happy with this news. The doctor advised that we put the chemo on hold and go for surgery to remove my breast. She booked me in to see my original surgeon the following week. I was very keen to have my breast removed. I saw the surgeon and she agreed that this was the best course of action. She was also keen to remove all of my axillary lymph nodes. To explain this, basically breast cancer cells can break off and spread to the lymph nodes in the armpit. This of course increases the chances of the cancer finding its way to other parts of the body. When undergoing breast surgery a sample of lymph nodes will be taken (there are approx. 20 - 30) and examined for disease. As far as I know should there be disease detected then the entire axilla is removed. My sample had come back clear during my initial lumpectomy and therefore this hadn't been necessary. When the doctor recommended removing the lot this time around as I said, I was less accepting of everything in the medical world and challenged this. I asked her to give me information on what complications this could bring. She told me that there was a one in five chance of developing lymphedema. Here is a medical definition of lymphedema;
Lymphedema involves blockage of the lymph vessels, with a resulting accumulation of lymphatic fluid in the interstitial tissues of the body. The lymphatic system consists of lymph vessels and lymph nodes throughout the body. The lymph vessels collect lymphatic fluid, which consists of protein, water, fats, and wastes from cells. The lymph vessels transport the fluid to the lymph nodes, where waste materials and foreign materials are filtered out from the fluid. The fluid is then returned to the blood. When the vessels are damaged or missing, the lymph fluid cannot move freely throughout the system but accumulates. This accumulation of fluid results in abnormal swelling of the arm(s) or leg(s), and occasionally swelling in other parts of the body.
Given the stage in my journey I sought a second and third opinion. I had not been particularly lucky with the news so far and was determined to be more in control this time around. What if there was no disease in my lymph nodes and I ended up with lymphedema. Two other doctors agreed with me that during surgery only sample nodes should be taken. Should these show disease then further surgery could be done and so I was decided. I underwent a mastectomy in January and again the surgery was straightforward. I was discharged the following morning and recovered well. 10 days later I returned to hospital to have a check up and get the results of the lymph node biopsy. I was again worried. For the first time in19 months I was actually given good news. There was no disease in the lymph nodes which had been removed. Well how about that. Taking a bit of control over my illness had paid off, it was one less potential health problem to deal with. Ask questions, make decisions, it's YOUR body.
- Buddha
Coming to terms with having incurable cancer was pretty hard. I doubt that will come as a surprise. I was put forward for a clinical trial. As I have triple negative breast cancer, this means that drugs such as Herceptin and Tamoxifen don't work. Researchers are now looking more closely at triple negative cancer. As it affects roughly only 15% of breast cancer sufferers it has not been as well researched as others, which is understandable. For women who may be diagnosed with this rarer form of breast cancer I would recommend finding out as much as you can about it and using your knowledge to take more control of your illness. I pray that I can survive long enough for them to come up with a wonder drug for my type of cancer. In the meantime I will continue to take chemo. Anyway, I was put onto Carboplatin, a chemo commonly used to treat primary lung cancer but recently discovered to work effectively on secondary or metastatic triple negative lung cancer. I was willing to try anything. The other bonus was that this chemo didn't result in hair loss. The side effects generally seemed a lot less brutal than my first chemo. I was fairly open minded. Despite having a significant tumour in my breast the main priority was dealing with the lung lesions. I started my second chemo in late October. As I had been told, it was indeed less debilitating. I had side effects but they were tolerable. The only problem was that my white blood cell count and my platelets were slow to recover and my 3 weekly cycles were regularly delayed. This of course caused stress. After 3 treatments I was due a scan to see how effective the treatments were. I went for my scan on Christmas eve. I then waited and worried until Jan 3rd for the results. I tried to take on board my specialist nurses advice, which was to live one day at a time. When she first said this back in October I remember thinking that I had no idea of how to do that. I am now better at it and believe it or not it is actually a very liberating feeling and definitely something that we could all benefit from. However, I would be lying to say that I don't worry prior to scan results. On the day of the results I was tired from lack of sleep and my mind took me to all sorts of dark places. I was being seen at 2 pm and it made for a very long day. Waiting to be called was painful and following the doctor into the consultation room felt like a very long walk. As always I was trying to discern the news from her body language. She didn't beat about the bush and basically told me that the news was not the best. I felt sick. In the space of 5 seconds I had myself dead and buried. I'm sure I will go through such emotions again. The news was not as bad as I had mentally prepared for. Unusually, the scan had shown that my lung lesions had not changed (this is considered good, shrinkage even better) however, the tumour in my breast had grown. While this was not a common finding, it was not unheard of. Strange as it may sound I was pretty happy with this news. The doctor advised that we put the chemo on hold and go for surgery to remove my breast. She booked me in to see my original surgeon the following week. I was very keen to have my breast removed. I saw the surgeon and she agreed that this was the best course of action. She was also keen to remove all of my axillary lymph nodes. To explain this, basically breast cancer cells can break off and spread to the lymph nodes in the armpit. This of course increases the chances of the cancer finding its way to other parts of the body. When undergoing breast surgery a sample of lymph nodes will be taken (there are approx. 20 - 30) and examined for disease. As far as I know should there be disease detected then the entire axilla is removed. My sample had come back clear during my initial lumpectomy and therefore this hadn't been necessary. When the doctor recommended removing the lot this time around as I said, I was less accepting of everything in the medical world and challenged this. I asked her to give me information on what complications this could bring. She told me that there was a one in five chance of developing lymphedema. Here is a medical definition of lymphedema;
Lymphedema involves blockage of the lymph vessels, with a resulting accumulation of lymphatic fluid in the interstitial tissues of the body. The lymphatic system consists of lymph vessels and lymph nodes throughout the body. The lymph vessels collect lymphatic fluid, which consists of protein, water, fats, and wastes from cells. The lymph vessels transport the fluid to the lymph nodes, where waste materials and foreign materials are filtered out from the fluid. The fluid is then returned to the blood. When the vessels are damaged or missing, the lymph fluid cannot move freely throughout the system but accumulates. This accumulation of fluid results in abnormal swelling of the arm(s) or leg(s), and occasionally swelling in other parts of the body.
Lymphedema is a very serious condition. There is no cure for lymphedema and once it develops, it can be a long-term, uncomfortable, and sometimes painful condition requiring daily treatment. When lymphedema is not treated, the protein-rich fluid continues to accumulate, leading to even more swelling and hardening (referred to as fibrosis) of the tissues. This fluid is a good culture medium for bacteria, thus resulting in reoccurring infections when there are injuries to the skin, decrease or loss of functioning of the affected limbs, and skin breakdown. Infections, referred to lymphangitis, can affect the connective tissue under the skin. Repeated infections may result in scarring, which in turn makes the tissue susceptible to more swelling and infection. Over time, these infections result in tissue hardening (i.e., fibrosis), which is a characteristic of advanced chronic lymphedema. In very severe cases, untreated lymphedema may even result in a rare form of lymphatic cancer called lymphangiosarcoma.
Hmm I wasn't too keen on this!
Given the stage in my journey I sought a second and third opinion. I had not been particularly lucky with the news so far and was determined to be more in control this time around. What if there was no disease in my lymph nodes and I ended up with lymphedema. Two other doctors agreed with me that during surgery only sample nodes should be taken. Should these show disease then further surgery could be done and so I was decided. I underwent a mastectomy in January and again the surgery was straightforward. I was discharged the following morning and recovered well. 10 days later I returned to hospital to have a check up and get the results of the lymph node biopsy. I was again worried. For the first time in19 months I was actually given good news. There was no disease in the lymph nodes which had been removed. Well how about that. Taking a bit of control over my illness had paid off, it was one less potential health problem to deal with. Ask questions, make decisions, it's YOUR body.
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