I have been on the discussion boards and have posted on several occasions so many of you may already know what’s going on with me. I was diagnosed in January with a recurrence of USPC in the supraclavicular lymph node & developed several spots on my lungs. The mass was 3.5 cm x 4 cm and was visible just by looking at my left neck. It looked like my jugular vein was sticking out. It was determined I could not have surgery because of how the mass was intertwined with the key network of veins that affect so many of the bodily functions, breathing, speaking, swallowing, arm movement, etc.. The original course of treatment was to be 1 – 3 rounds of taxol/carbo following by targeted radiation. I had responded well with it the first time around in 2010.
This Monday, I had round 3 of the taxol/carbol, but before the chemo, my ONC/GYN expressed great joy at how much the mass had decreased in size. He could still feel it, but it was significantly smaller and it was no longer visible to the eye. My CA 125 had also fallen from 79 to 35. He decided, because I had responded so well with taxol/carbo without any adverse allergic reactions, he wants to continue with 1 – 3 more rounds of chemo. I agreed to it, but I must say, this really scares me. I don’t have anything to base my fear on except what I’ve read in the discussion boards of this website. From the many posts I’ve read, this combination of drugs is great, but not for long term because of its dangerous side effects to other parts of the body, etc. What are your thoughts on this? I trust my ONC/GYN but he’s just one doctor & I’m sure he’s never experienced dealing with every form of USPC or knows every protocol or treatment available. He’s connected with all the ONC/GYN at MD Anderson here in Houston so there is a bit of a comfort level trusting him. What concerns me is that he doesn’t mention the majority of the information discussed on this discussion board. What do I bring to his attention? What is relevant to my USPC cancer journey?
I felt so bad this morning, I thought I would try to read a lot of the posts again just to get some ideas of what to do to try and feel better physically and know I’m contributing to fighting this dreadful disease. The only nutrition advice I got from my ONC/GYN and a book he gave me (from the American Cancer Society) is eat whatever I want. I have to eat and if I can get it down and keep it down, that is the goal. I got so confused because so many of you make suggestions – many of which, I’ve never even heard of the ingredients; plant based diet or 80%/20% plant/meat diet or tofu/good or tofu/not good or soy/yes or soy/no or vitamins/yes or vitamins/no or hormones matter or hormones don’t matter or chemo or radiation, etc. Each contribution to the discussion board is supported by personal experience, research, studies, etc, but which one is the ‘right’ one? If I want to make life changes that I know can only help me or I want to discuss treatment options with my doctor how do I narrow in on the relevant one for me? I don’t want to be like my Dad who died from cancer – every week he was on a new diet, or a new supplement and nothing changed, ever. He was miserable because he was constantly reading and researching and looking for that miracle that just never happened.
I want to be sensible and for me the 80%/20% plant/meat would be a huge improvement over what I eat. We are a meat & potato family. I need to add exercise because I really feel weak and have no stamina. How I start that feeling the way I do will be the million $$$ question.
I am going to talk to my doctor about hormones. I pulled out my biopsy of the mass and it showed it is USPC but it also showed “scattered strong positivity for progesterone reactor”, and “scattered weak positivity for estrogen reactor”. Compared to my original biopsy after my hysterectomy in 2010, it said “negativity for the progesterone reactor”, but “positivity for estrogen reactor”. Basically, I now show positivity for both progesterone and estrogen. My doctor did not discuss this with me - his primary concern was that the original cancer was USPC so he would know how to treat it. How it could affect my overall treatment plan, I have no clue, but at least I can have an intelligent conversation with him about it. Until I read about progesterone and estrogen on the discussion board, I never even knew about it. Your thoughts at how to get started on a healthier diet & lifestyle. I’m 63 – may be hard to teach an old dog new tricks!