Change of plans

Well, after all my justification for not having chemo, I went back to my surgeon, who was horrified that I wasn't having chemo. He had sent tissue from the metastasis to my rectum to a lab in Pittsburgh, who did a ChemoFx (personalized clinical tumor profiling) report on chemotherapy drugs that were effective against MY disease. I brought this to my medical oncologist who told me that she didn't use this kind of test and read me an article from 2011 (6 years ago) that said that the test wasn't used outside the clinical trial setting. When I asked her what the chances were of recurrence, she said she didn't know because it was a rare tumor that she didn't have any experience with! My confidence in her was totally thrown out the window! So I decided to heed my surgeon's advice and opt for chemo after all. How can the oncologist disregard a test that shows that the tumor material is responsive to drugs and want to wait and watch instead, not knowing what will happen. It's not HER life to gamble with! My surgeon offered to refer me to a university program and I may just take him up on it. She tried her best to talk me out of chemo despite evidence to the contrary and now I feel like I won't get the best or most recent care from her. I'm set for pre-chemo teaching next Friday and then to have a port put in and chemo started the following week. I'm calling my surgeon to be referred somewhere else, though because my confidence in her has been shattered!

21 Replies

oldestnewest
  • You made the right choice. I had dose dense from August through December of 2013 for 18 straight weeks. Week one, Taxol and Carbo, weeks two and three Taxol, repeated six times. I sailed through with just some fatigue the third and fourth days after treatment. But, that was it. I wish the same for you. I did have low blood counts three times and had blood transfusions instead of treatment, but didn't have to make those treatments up.

    I'm telling you this to let you know chemo is not always horrible.

  • Thank you for sharing positive statements about chemo I should b starting mine within weeks and have sit myself up for the worse and reading your results make me feel 100% better and I totally understand everyone is different . Encouragement !!

    Thank you Mary

  • Go in with a positive attitude, come out with a positive attitude. Take special care of yourself through chemo. Let the ones around you spoil you. 😊

  • You ladies are so very special and helpful .. (words cannot describe ) I will drink lots of water I hope the bathroom is near by I pee a lot !! Lol any other suggestions are always welcomed

    Bless ya Mary

  • I'm going to keep in touch. My daughter got me an adult coloring book. Lots of books and movies downloaded. Comfy clothes/ a new recliner for home. The recliner is right near bathroom. I'll fix lots of small snacks, lots of water. Ask People for help( really not my strong quality) but I'm ready. Thanks all of you wonderful angels for your stories that boost my positive thoughts into action. We've come along way. Have a super day

  • Hope everything is going well with you. Stay Strong and may Peace, Love, and Joy be with you and your family through this journey. Only the Strong Will Survive. Take Care.

  • You said it Ovarian Cancer Sister. I like that attitude. We have to keep a Strong Mind to keep that positive attitude no matter what. Were going to Kill this Cancer together!!!!!!!!!!!!! Take Care.

  • Remember drink alot of water even during your treatments. Pee out as its going in...and only you know if you need a break...I need to remember these words for myself

  • Thank you Cynthia .. 😊 any other ideas greatly appreciated .. I go back March 16 for blood results and genetic testing my scan came back great .. March 20th 6 hours I go for chemo .... I say bring it on !! And we will win at the end ! We got this .. 😁

  • Yes we got this

  • Amen!

  • I took will be starting soon :( God will be with me :) as he will you!!!

  • I am really pleased you are now able to move forward with this and that a comprehensive plan of positive action is now in place, I was one of those who was hoping you would go down the chemo route instead of taking a chance with a healthy future. I wish you well with your treatment, it's really not all that bad. Hugs ❤xx Jane

  • Terrified, glad you're opting for chemo. Watch and wait could kill you. Please get yourself an up to date doctor who feels passionately about stopping cancer. If she doesn't know about "your type of cancer" then quickly move on to a doctor who does. Or at minimum is willing to learn about it so they can help you. Tesla

  • I'm so sorry to read about your oncologist seeming lack of knowledge of the progress that ovarian cancer treatments has and is taking. Yes I too would feel like you do now. Personalised tumour profiling is what we all want isn't it? She sounds behind the times as its something that is being aimed for for all.

    Chemo sounds the best move for you and also the university programme too must be worthy of a check out at the very least.

    Thinking of you at this stressful time

    Clare

  • So happy to hear that you are moving forward with treatment and a new Doctor. Taking action now to know you are doing everything you can to beat this has to feel empowering and we each have to trust our intuition on such matters as this.

  • I would also change ONC. My doc said that the tumor profiling is done in test tubes and does not translate perfectly. He had mine fine also. He follows the National Cancer Institute guidelines. Carboplatin and Taxol. So many more strides in cancer research is being made daily.

    Wishing you peace and remission The port is a godsend and chemo not too bad. Be sure to drink an ocean of water. It helps everything.

    Xx Carol

  • Can't stress water enough

  • Good for you! Its okay to feel terrified, we all do. My fear and anxiety is a constant struggle for me. But not okay to be paralyzed! Your surgeon is giving you good advice and go forth and find an oncologist that that will fight hard with and for you. I've begun to realize trust in your oncologist is a massive priority. Sounds like your surgeon is able to refer you. Run, don't walk towards that referral! You will not ever regret being as aggressive as you can. You got this! Go get'em!! 💥🤛🏻👊🏻

    Keep us posted, on your progress or any chemo advice you may need. The women here have been incredibly supportive teachers, mentors, cheerleaders and nurterers. You are not alone!

    Best,

    Anne 🌺🌼🌸

  • Yes definitely go to another doctor. My surgeon is an oncologist/ gynecologist. I have all the confidence in the world in her. That's a must while fighting this cancer. We will survive. My doctor surgically removed everything, even lymph nodes that were benign. Still she said even though she " got it al". There are still micro cells floating around so chemo is a must. Had my portvput in last Wednesday hope to start chemo after my PET SCAN/ CAT SCAN. I have stage IIIb Ovarian cancer. It's a bad cancer but I'm a badass. Cancer picked on the wrong woman. So, never settle be active in your treatment. If you're not getting right answers keep looking. Prayers and thoughts are coming your way. Keep positive, you are going to get through this !!!!!'

  • Hello there thanks for sharing your story. I went through all types of options. But didn't have the time to do the research on them all. Just jump straight into Chemo due to the stage of the mass. I had the fluid build up in my stomach when I diagnosed. Which was suppose to be a Urinary Track Infection but all along it was Ovarian Cancer. If you have the time to spare go for another opinion.

    I wish you the best though out your journey. Keep in touch and let me know how things are going. Stay Strong and remember Only the Strong will Survive.

You may also like...