New Year, New Tests, New Decisions

Although I did allow myself to enjoy the holidays and my time off from work, in the back of my mind I was quite anxious about my consultation with an oncologist, Dr. Biggs. 

The appointment was scheduled for January 3 at 1:40 PM.  We walked out of his office around 3:15 PM.  That was definitely my longest appointment so far (other than surgery) and mostly because there was so much information to take in. 

Dr. Biggs started with a physical exam and then we moved into his office to discuss everything.  It was very overwhelming and this was the first appointment that I spaced during.  I remember looking directly at him and just seeing his mouth move, but not really hearing anything come out.  Luckily Bri had the notepad and pen, but he was trying to listen too. 

In his office, Dr. Biggs reviewed some of my “stats” with us. The info gathered from my surgery was that the cancer is still Stage I with a small 1.1 cm tumor, node negative, grade 2/3 and I’m estrogen receptive positive (ER+).   The grades explain the aggressiveness of tumor cell growth on a scale from 1 to 3, with 3 meaning fast/aggressive cell growth rates.  Before surgery I was grade 3, but now they have downgraded me to grade 2. However for purposes of treatment decisions, we are using grade 3.

Dr. Biggs also discussed all the treatments options such as chemotherapy, radiation, and hormone therapy.  Radiation is a given – I have to do it.  Hormone therapy is a treatment that removes hormones (estrogen which makes some breast cancers grow) or blocks their action and stops cancer cells from growing.  The hormone therapy that I would be placed on would be tamoxifen which is often given for an extended period of time (5 years or slightly less) and is given to patients with early stages of breast cancer.  Yup, that just about describes me. 

But what about the dreaded chemotherapy?  When I had the follow-up appointment with Dr. Penman she mentioned additional tests that could be done to determine if I need chemotherapy.  Dr. Biggs again gave me some statistical information.  I was given two papers with bar charts with information about recurrence and survival rates.  Of course nothing is black or white here.  Basically, the charts showed the recurrence and survival rates after 10 years for women with my exact characteristics.  However, the information was presented in four different scenarios, showing survival and recurrence rates for those who did no further treatment (aside from radiation, that’s a given), treatment with only hormonal therapy (tamoxifen), treatment with just chemotherapy, or combined treatment.  With each addition of treatment, it appears that one’s survival rate is increased and the recurrence rate is decreased. 

However, there are some women that do just fine with the hormonal therapy, meaning chemotherapy does not really offer an added benefit.  And of course there’s a test for that!  The test benefits women with early stage, ER+, node negative cancer – woo hoo, that’s me!  This Oncotype test helps provide more information about how likely (or unlikely) the breast cancer is to come back, and helps predict the likelihood of benefits from chemo treatment.  Given my oncotype score, I can then make decisions about my treatment plan.  Dr. Biggs referred to this as “shared decision-making.”  I’m really happy that I’m included in this process and empowered to make choices, but it is also quite scary. 

Scoring:  This is the one time in my life, I’m hoping for the lowest score possible!  Info below was taken right from the website.

  •  Score lower than 18: Low risk of recurrence. The benefit of chemotherapy is likely to be small and will not outweigh the risks of side effects.
  • Score between 18 and 31:  “Intermediate” risk of recurrence. It’s unclear whether the benefits of chemotherapy outweigh the risks of side effects.
  • Score greater than 31: High risk of recurrence, and the benefits of chemotherapy are likely to be greater than the risks of side effects.

Even if I have a low score, I am still not completely certain what my decision will be.  I am thinking that if I am somewhere in the middle that I will just suck it up and go forward with chemotherapy.  We will see.  I still have a few weeks before I get the results back.  I have read some of the message boards on the Young Survivor Coalition’s website about women who were weighing the decision about chemo.  These message boards did not help at all.  For every poster that encouraged women to do chemo, there was another poster asking why a woman would put herself through chemo if would not really benefit her.  So, I am left undecided and will just take it one step at a time. 

The other thing to note is that if I do move forward with chemotherapy, it will likely be the most aggressive kind (due to my age) lasting about 6 months.  Fun!  And I will likely lose my hair.  Great!  The good news is that if I do move forward with chemo, Dr. Biggs gave me the green light to work with the reproductive doctor and freeze some embryos for later use – as in 5 years later when I’m done with tamoxifen.  Despite its use for fertility, women should not get pregnant while on tamoxifen.  So, this is where I started crying during our appointment with Dr. Biggs and where I started zoning out.   

It was definitely a lot to take in at once, but I feel ok now knowing what the options are given different scenarios.  I’m still really anxious to have to plan of attack in place and know for sure what I will be enduring.

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