Trusting the Oncologist's outlook

Sounds promising, but what treatment have you had so far?

I just came today from a herceptin infusion, and my "survivorship class". MY onc also has said, "you'll live a long time," but when I pressed him and asked what my rate of recurrence was, he told me 50/50. I agree the passive answers are not making sense with the literature found in my research. Even the breast navigator irritates me. Since radiation ceased, she constantly says, " you are cured! " and claps her hands. 😒

My trusted surgeon has said more than four times... " cancer is a manageable long term disease... I have high blood pressure, and will always have to treat it." Still not straight answer. Preparation in a round about way? I was not given straight answers unless I REALLY pressed.

I understand for some, straight answers may be frightening. I know God holds all my days.... But I am strong enough to receive the truth.

Thank you all for voicing my feelings!!

When I was diagnosed I would have given anything for my docs to say I would be cured.  They would not so I stopped asking.  For the first year or so I used to ask for a guarantee until finally one of my docs said, "You won't know that you survived breast cancer until you are old and die from something else."  I didn't like that she said that but she was right.  None of us will know if we are long term survivors until we actually ARE long term survivors.  It is unsettling for sure. 

My other doc (radiation onc) knows me well and seems to understand my need for reassurance.  One time I said, "I feel like it's good that I have survived a few years, but does that just mean that I am closer to recurrence?"  He said, "Carol, all I can tell you is that I expect you to live a long time and you have to get to 5 years before you get to 10.  You have to get to 10 before you get to 15 and 20."  He also said that he has lots of stage III survivors that are still his patients or who don't even still see him.

Stage III is super scary.  I had just turned 40 when I was diagnosed.  I had a bunch of positive lymph nodes and had 2 lymph nodes with extra capsular extension (cancer coming out of the nodes!).  I was certain I would not still be around for my then 4, 6 and 8 year old daughters.  Guess what? That was over TEN years ago!!! My oldest is 19 and a Sophomore in college, my middle daughter is 17 and a senior in hs and sitting next to me looking online at colleges and my youngest is 15 and a sophomore in high school.

There is hope!!!  Hold onto that hope and if the fear takes over seek counseling.  Counseling was the BEST thing I did for myself.  It took only a few sessions to help me reframe the cancer experience and got me out of the cycle of scary thinking.

I appreciate this thread because I have had the same thoughts/questions. My MO said that my condition was "curable." After surgery, I had a 50/50 chance of recurrence if I did no further treatment. With chemotherapy and hormone treatment, he said my odds of avoiding a recurrence increased to 80%. I have no idea how accurate these numbers are but considering my darkest thoughts, they sounded encouraging to me.

My breast surgeon, after giving me all the bad news - mastectomy, chemo, Herceptin, radiation, Stage 3 - looked me in the eye and said, "We can cure you."   I did not believe her, but I had those words put on my dining room wall in 10 inch tall letters.  I can see it from almost every room in my house.  In my darkest days of treatment, I would sit at the table and stare at those words saying them over and over again as a mantra. 

Next month, it will be FIVE years since diagnosis.   I made it through including a heart attack from treatment and only 3 months of Herceptin because of more heart issues.  And those words, WE CAN CURE YOU are still on my dining room wall.  They have become a part of my house and of me.

Every year at Thanksgiving (the time of my surgery), I write my breast surgeon and thank her for saying those words to me!  It was the GREATEST gift anyone ever gave me.

The "cure" word does not eliminate the fears, but it sure helps!  Focus on those words!  They have power! Write them down, paint them on your wall or write them on a banner.  You have received a GREAT gift.  You don't have to believe them.  But 5 years from now, you will!!!!  

All the best!

Great post Denise. Congrats on your 5 YEARS.

Thanks for the good wishes!  I can't believe it myself!

VLH - Lyn  -- about my cardiac issues.  I had NONE before chemo and my pre-chemo heart tests were all normal.   After the third month of Herceptin, my Echo dropped like crazy. My EF went from 65 to 29 (and never improved), so I had to get off Herceptin immediately.  So my MO  sent me to a cardiologist who specialized in valve issues.  The cardiologist ran tests including a Nuclear Stress Test.  It showed that I had a previous heart attack probably recently.  He explained there really are no "silent" heart attacks, just symptoms that go unnoticed are ignored.

I CLEARLY remembered a night after my third AC chemo, where I was short of breath, had arm pain, chest pressure, etc., but I was rather new to chemo so thought it was more bad SEs of AC.  I had a really rough time through AC, so I really never thought about my heart.

That was all the bad news.  The good news is my heart is very stable, and I am asymptomatic.  I take heart meds daily, visit my cardiologist only once per year now, and live pretty normal life! 

But I am ALWAYS telling women, protect your heart.  In my book, it is a good idea if you have any issues whatsoever to visit with a cardiologist so they can keep an eye on your heart during and after chemo.  I know some heart issues don't appear until 5 or more years after chemo.   It is not talked about enough in my book!

Hope this helps!

Hello all -

I am looking for anyone diagnosed with chemo-induced cardiomyopathy and came across this page (though it appears to have been inactive since May). Anyway, I have been diagnosed with this after completing 4 rounds of Adriamycin/Cytoxan (which hospitalized me twice - neutropenia) and 7 rounds of Taxol. My MO has stopped my chemo and I've been referred to a cardiologist and they've started me on a Beta Blocker. I'm told that there's no evidence of muscle damage so recovery of heart muscle is possible. It's just all a bit overwhelming and scary to have this diagnosis. So, hoping to connect with survivors that have had a positive experience getting through this situation to hear your stories -

• What was your lowest ejection fraction when diagnosed? (Mine is 20-25%)
• What types of medicines you were provided to overcome cardiomyopathy and how each helped?
• Did you have a high heart rate and what besides the beta blocker were you given to reduce the heart rate?
• How long it took before for your heart rate lowered?
• How long it took for you to notice a difference with regards to shortness of breathe and were able to begin exercising again/doing more than walk?
• How long it took you to make a recovery? Was/is your recovery a complete reversal?
• How long you have been recovered?
• And other helpful information

Because of the hot mess I was in when I was diagnosed....huge tumor....at least 17 nodes.....and because I had the resources to do so... I traveled the country and spoke with several oncologists from MSK in New York to MD Anderson in Houston...Miami and finally to Dallas. It was a mixed bag on how optimistic doctor's were.....some said we want to get you to "long term remission".... I hated that. I finally ended up with a doctor in Dallas who had successfully treated high positive node individuals that were all doing well.....he told me my cancer didn't scare him... I was going to be fine. Honestly, I walked out and said to my husband.... "I don't know if he will be right....but I would rather have him on my side." I loved his positive outlook. Twelve plus years later....I am still here.

I think the next ten years there will be so many breakthroughs that today....more doctors can be more positive about our outcome. There will be so much more in the arsenal.

Jacqueline

hello YATCOMW,

My mom just had a surgery yesterday and I think her case is similar to you. She had a big tumor (4-4.5cm), she had neoadjuvant therapy first, which shrieked the tumor but it doesn't seem to have destroyed at the nodes. The surgeon said that during the lymph node removal, clinically seem that her nodes are cancerous. Based on this my moms prognosis is not good. Can you tell me what was the method you followed all those years?

Thank u