After Treatment-Fear

Sultanmadam

Hello,

I was diagnosed with Triple Negative Cancer last year in March. The entire year was spent in treatment, Chemo, a Lumpectomy and then Radiation.

My last radiation treatment was at the end of November.

I had Chemo first as the Oncologist wanted to see the response. After treatment the tumor was no longer visible. So I had a good response. Tests after the Lumpectomy showed that there was 1 Cancer cell in a mammory node. After that, I had 20 rounds of Radiation, the last 8 being "Boost" treatments to the exact spot that the tumor had been in. 

My next mammogram after treatment is in May this year. 

I don't know how to get over the fear of reoccurence. I know that I should have been thanking my lucky stars that I had such a  good outcome. And I should be living my life happy and joyful, but I don't know how to let it go. Then I worry, that my worry will bring my Cancer back. 

I can't even say why I am writing this post. I think it is because I need someone to share my fears with. 

Mentally I get it, one has to accept that this happened, accept that I could have reoccurence at any time and enjoy the time that I have on this earth, but knowing it and living it are two different things. 

Thank you. 

 

Patriot_Mom

Fear of Recurrence

I think all of us who have been through that have the same fear, and it is a realistic one.  When I finished my chemo and raditiation, I tried to tell my surgeon to just take the both off because I never, ever wanted to go through that again.  He wouldn't have it and talked me into a lumpectomy.  The tumor had shrunk from a rather large one down to just a tiny bit left, but my lymph nodes were clear.  Still they removed the sentinel lymph node on that side, just to be safe.  He assured me he got "clear margins" and that my chance of recurrence was a very low 15% just as if I had never had cancer.  What a liar!

From that point on, every single time I had a mammogram, there was always that nagging fear.  It was relieved afterward when there was no problem found, but my nagging fears were even worse when a hard lump seemed to grow again.  But my doctors said it was likely just "evolving scar tissue".  When the radiologist alerted to another spot that required a biopsy I was heartbroken, but it turned out to be "fat necrosis".  She alerted again the next time and he refused to put me through another biopsy when it had alread been determined to be fat necrosis.  The third time she alerted that there were continued changes and she was very worried about them, he consented to do an ultrasound guided biopsy to get just the spot she was pointing out.

All this played out over a period of about 4 years of getting mammos every 6 months with doctor exams.  The last one ended up confirming what I already suspected from the growing hard lump in my breast, that my cancer had returned.  My oncologist ordered a CT scan, which confirmed it and located other suspicious area.  A PET scan confirmed that, not only was it back, but it had metastasized to my lungs, and possibly several other areas.

I changed doctors -- oncologists, surgeons, even hospital cancer centers.  My new doctor -- a highly respected cancer doctor and researcher at Vanderbilt -- was honest enough to tell me that the average lifespan for someone with my condition was 1 1/2 - 2 years.  I'm not telling you this to scare you, but only to validate that you should listen to your body.  If you at any time suspect that your radiologist and doctor disagree, or are unsure of the treatment you're getting, or suspect that something may be happening that they're not catching -- get a second opinion. By the way, the treatment I'm getting this go around (carboplatin) has let me keep my hair and I'm not nearly as sick with side effects as before.

Now I think I may be able to make a liar out of that doctor.  I'm 6 months into my current treatment for triple negative cancer -- which is notoriously hard to treat and tends to find a way to return or get around the chemo -- but my tumors are down 44% from baseline.  I contribute that to not only my chemo but also the Keto Diet I have been on.  Read my other post if you want to know more about that.  I would highly recommend it for any of us battling this insidious disease.  Never give up and don't let your fear rule you, but don't discount it either.  God gave fear to us for a reason.  It's a survival mechanism.

 

lbpontel

Fear of recurrance

When I was diagnosed (Stage 1, Triple Negative Breast Cancer), my surgeon told me that medical oncology was really an actuarial science.  Meaning that it is all about the odds and percentages.  I find knowing the percentages to be very helpful.  You can ask your doctor, or find online, what the odds are of your cancer coming back.  If the odds are 15% of reoccurance, that's an 85% chance that it won't.  I'd feel pretty good about those odds.  Then focus on the things you can control to be healthy. 

Talking about it is good; sometimes things in your head don't sound or feel so bad when you say it out loud.  Find someone to talk to or write to to get your concerns out.

Good luck to youo.  I'm amazaed every day by stories of people with what used to be thought of as uncurable cancer who have benefitted greatly by new protocols.