Hernia and CA125 level

Good morning Lily_Anne

Have read your “about me” page, and taken a glance at your blog.  I read the one dated July 18^th.  I’m putting a copy of it here so others can get an idea of where you’re coming from.  Since I don’t live in the UK, I’m not sure of the approach your doctors take, but often I find some good references that are easily understood from the UK sites, but since Britain has universal health care, I can’t assume that all the treatments available to us here in the states are universal for you as well.

I will tell you that I cannot answer your question about a possible recurrence.  However, even with surgery, that doesn’t guarantee that the cancer will never rear its ugly head again.  All I will say is that anytime our tumor marker CA-125 starts to rise above the acceptable normal of 35, it does give us cause for concern.  My oncologist performs CT scans periodically to check the progress of my Stage IV Ovarian Cancer, Peritoneal Carcinomatosis ongoing diagnosis.  The surgical removal of all my non-essential organs, (Cytoreductive surgery) (CRS) in July 2013, has been helpful.  If nothing else it removes the possibility of the cancer’s further spread to some of my organs in my abdominal cavity.  I know that the cancer doesn’t actually say to the Liver, “Hey you want a piece of me?” but it’s possible that the two may unite in the future.  For instance, it “knocked on the door of my Liver” back in 2014, but targeted radiation to the Caudate Lobe of my Liver totally eradicated 3 cancerous nodes. 

Meanwhile, I talk to my oncologist, make myself aware of all the possibilities, and then put them on the back shelf of my mind, until any one of them become a reality.  Lord knows each day has enough problems of its own, without borrowing from the future.

 So I can only say that a rise in the CA125 is a cause for concern.  If I interpret your comments correctly, you are not going to go the “chemo route” even if this is a recurrence.  Now we all know that chemotherapy can also be “spelled out in the lyrics of the song, “I BEG YOUR PARDON, I DIDN’T PROMISE YOU A ROSE GARDEN!”  But for the time being, my two sessions of chemo of Carboplatin & Paclitaxel (Taxol) have enabled me to “smell the roses” for almost 4 years longer than I first imagined back in November of 2012. Sometime in the future, chemo possibilities will have run their course.  I’ve already relieved my family of making decisions for me.  Although we want support, informed decisions are best made by owning one’s cancer, facing it, and not depending on well-meaning family members and/or friends to tell you what’s best.  My family knows how I feel, and they know I will be the one to say when, “Enough is enough.”  Family members mean well, but only the patient knows how they are really suffering.  Only the patient should make the decision.  And I see you’re exercising that choice.

All I can say, I wish you the best.  And incidentally, my dreams of getting down again to a size 10 went out the window when I got my diagnosis.  Losing weight got put on the back burner, and I haven’t counted another calorie since then.  Like my surgeon said when I talked to him about a diet, he smiled and said, “I like my cancer patients fat”.  I deplore political correctness and I used the word “fat” when talking to him about my weight.  Incidentally, for all the curious I weigh in at 164 and my oncologist is happy that I’m maintaining a consistent weight.  No doubt in whatever time I have left allotted to me on Planet Earth that the weight will start to “drop off” whenever the cancer gets to a point of “nothing else we can do.” 

And I’ll cross that bridge when I get to it.  Meanwhile, I’m enjoying the quality of life I have TODAY—haven’t had to deal with “tomorrow” yet!

Wishing you all the best in your search for alternatives other than continued chemo in the event that this is really a recurrence.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

Your blog of July 18 here.

JUL

18

“Ticking Along

  It's funny how state of mind changes everything. I've reduced the amount of forum browsing I do, not only can it depress me it also takes me into the world of cancer, and that is somewhere I don't want to be. I've never been one for email updates, but about two months ago I decided to withdraw a little. If I've been hunting through emails I might then flip onto three forums I visit more often. Positivity rules right now.

August is test time, so I've booked a holiday for September, I won't be taking any treatment options as I believe the cure is state of mind. That doesn't make me crazy just realistic. I've always been anti chemo, and seeing the side effects that make so many strong women crumble, I'm just not prepared to put my foot in that door. Worry becomes stress, and the knock on effect is heart disease and cancer. I've been reading a rather interesting book. One that is very thought provoking. Called 'Mum's not having chemo' by Laura Bond.  It's not a geeky health extreme book, but it does have some interesting advice, it also reflects how a family feels based on the patient's choices. I speak to so many people that feel forced by their family to follow the standard procedure, and not think to the does one size fit all.

I owe it to myself to think outside of the box. Ovarian cancer is a recurrent disease, only 5% never recur. These are usually stage one. Being stage one myself I was hopeful to fall into this figure but it was not to be. Survival rates are determined by five years, so if i reach that point I am a survivor even if it returns after that point. Whoever worked that out?

Tomorrow I meet a new oncologist, why am I going? Because there are things I need to know. How by the book are they, do they believe in alternatives, are they up to date with research. Will they support me in my choice. Or will it be Dr Jekyll, eek!

I thought between now and then, with the heat today I might have melted off a few pounds, still chasing the size ten, but talking of ten's that's how many pounds I've lost so maybe there is hope. I just wish energy would find me and inject me with super powers. I've gone for a high dose vitamin C, and hubby is having to have it too lol. Will tackle my GP with that one tomorrow.

So fingers crossed for tomorrow, the verdict, I am sure I won't stay with my oncologist and a change is good, if it's not then sadly I will look for a hospital elsewhere. The best news, my mammogram was clear.”