Day 79-80: Decision Time…

This is a long one… 2 days 5 doctors, 2 nurses and a resident.  Yep it’s been busy.  However, before I write it all up, there are a few disclosures I want to toss out there:

1. My cancer and diagnosis is not like the cancer and diagnosis of anyone else… and as such, no one has the same cancer situation as I do.  I think it is really important for people to do their own due diligence, my decision is mine solely and not intended to influence anyone else.
2. If you are a doctor and reading this, please remember you treat a human with a life they likely rather enjoyed prior to the diagnosis – you are not treating a disease but a person.
3. I have said since the beginning that quality trumps quantity for me personally.

That being said… here we go –

Day 79: Team 1, the original Medical Oncologist and the Naturopathic Oncologist.

I want to start by saying that I love this team, this medical oncologist fully believes in low dose chemotherapy and his results are amazing. He maintains his recommendation for 6 months low-dose chemotherapy followed by either monthly injections to stop my ovaries from producing estrogen or an oophorectomy followed by 5-7 years of an aromatase inhibitor.  He also recommended we complete the BRAC texts and a bone density scan.

The Naturopathic Oncologist started the conversation with, “Ok, so you had cancer – but in reviewing all the labs and imaging, there is not active cancer right now, correct?”  So we had a long conversation about recommendations on how we can make my body resistant to recurrence.  His list of recommendations include:

• REMOVING STRESS – he seems to really want me to hear that, and honestly, he is right to continue pressing me on that one… I do need to figure this out.  I sense some yoga classes coming my way.
• Exercise at a minimum 3-5 days a week
• Diet change: basically if I can’t pick it, catch it, hunt it or forage it… I should not be eating it.  No grains, no simple carbs.  Animal proteins should be kept to a minimum and they need to be grass fed organic or game.  Good news, a cup of coffee a day will not kill me, in fact his thoughts are that there are enough benefits to coffee to keep the cup a day (a cup a day…) in my diet, and he also said that alcohol has been around for as long as mankind… so a glass of wine or something at Bob’s on steak night is also not worth stressing out about.  This seems to be a decent compromise and doable.  But it will require weekly effort on Sunday to set myself up for success.
• Whole dark flax seeds – 2 tbsp freshly ground and dropped into a morning smoothie daily
• 5-10 cups of green day daily
• Recommended Supplements (I may do blog posts later that include links specific to each of these – but until then… use the google’izer people… so awesome!):
  • Vitamin D – 10,000 IU daily taken with a meal
  • Melatonin – 20mg nightly at bedtime
  • Aspirin – 81mg daily (research on this is actually a little mind blowing)
  • Indole-3-Carbinol morning and night
  • Turmeric supplement w/curcumin 2x daily
  • Mushroom Polysaccharide Complex taken 2x daily 4 days on and 3 days off on an empty stomach
  • Iodoral (Iodine/Potassium Iodide) Supplement, daily on M-W-F
  • Organic Spirulina as a multivitamin

Day 80: Wow… has it been that long?  New team of doctors for second opinion:

This was at a cancer clinic.  So all in one day – all day… from 11am to 5:30pm, I met with a resident that did a breast exam (shocker… didn’t find anything… they have been removed yo…), checked my lymph nodes and reviewed my adequately boring health history.  Then the Surgeon, Oncologist and Radiologist all burst in after lunch to do the same thing.  All three of them.  Still no breasts found… my surgeon did a good job.  All ooooo and aaaahhhh at how well I am recovering – no limitations, range of motion good, surgical sites are impressive… and so on… then they go pow wow… I should probably have let them know I could hear them whispering through the door… or maybe I should have whispered back as my sister recommended…. then they call come in separately to review their individual recommendations:

The Surgeon I met with said they ran some sort of predictor that says based on my situation, there is a 48% chance that there is cancer in additional lymph nodes.  She based this off a T3 tumor, I challenged this because I have copies of my records, she said she believes the original pathology team made a typo when identifying me as T2.  Her recommendation was that we remove the remaining lymph nodes as a diagnostic effort.  DIAGNOSTIC.  Not therapeutic.  No treatment here… just to “see” if any other nodes have cancer in them.  My response was to question risk of lymphedema for diagnostic purposes being that I am young and active.  Her response was that without this information the Oncologist and Radiologist are working with a hand tied behind back and this data would be used to shape additional treatment.  I said I was more comfortable with that than with me literally having a hand tied due to lymphedema.  Her response was that there are sleeves, etc. now.  This is why I have #2 above.  That is great that there are sleeves, but enjoy my active lifestyle – hiking, playing ball, target shooting, kayaking, weight lifting, trying to master a pull-up, wrestling with the dog or even the nephews, all of this makes me who I am… I am not ok with the possibility of losing this for “diagnostic purposes” – we are treating a human not a disease.  Needless to say, that conversation did not end well.  In fact, I am pretty sure I was passive agressively punished after that because I waited an hour and a half before the next doctor came in… I considered a nap… I considered ordering a pizza or a Jimmy John’s sammich… I considered leaving… but instead I took advantage of their wi-fi.

The Oncologist came in with her recommendations.  I am not gonna lie, I liked her.  She came in with a “Shared Decision Making” print out, where I guess there is a some software somewhere where they type in your particulars and it spits out “data” – maybe one of my medical professional friends knows more about this software… anyway… age 43, health fair, ER status positive, histologic grade 2, tumor size >5cm, Nodes involved 1-3, chemotherapy regimen third generation regimen… this report says:

• 30 out of 100 women are alive and without cancer in 10 years with no additional therapy
• 29 out of 100 women are alive and without cancer because of hormonal therapy
• 31 out of 100 women are alive and without cancer because of chemotherapy
• 49 out of 100 women are alive and without cancer because of combined hormone and chemotherapy

But wait… they are trying to add the 29, 31 and or 49 on top of the original 30 that would have survived anyway – in words she is telling me this increases odds to 49, 61 and 79 – but…. the text literally reads as above… oh heck… here is a photo.  Without seeing the actual data I am skeptical… the numbers don’t crunch like that.  I mean alternatively you could read their data to say that they lost one with hormonal therapy… just sayin’.  I will try googling this later to see if I can find the data somewhere, but let me just say… if you are gonna throw data at me… best to give me more than bullet points and bars…

Her recommendation: She starts with “Systemic therapies are used so that IF it is coming back, we prevent distant recurrence since breast cancer IF it comes back, comes back to the bone, blood liver or brain.”  Therefor she recommended both chemotherapy and estrogen suppression along with an aromatase inhibitor.  She did not recommend Tamoxifen since it would likely kill me with my blood clotting issue that I have… She had good bedside manner.  She then asked how I felt about chemotherapy, I told her I was not comfortable with it.  So we then talked about reducing my estrogen, she agreed that removing the ovaries would be a good plan and said studies find it to be better than suppression drugs because you’ve no doubt that the estrogen production from that area stops.

The Radiologist then enters the room: This is the first radiologist I have met with actually.  She says that my breast cancer has “features” that indicate it could recur in the lymph nodes or chest wall and that radiology reduces the risk from 30-35% down to 5-10%.  Radiation recommendation would be daily Mon-Fri for 30 minutes a day for 6 weeks.  Hmm… ok, I say, so what are the risks.

Short Term:

• Skin reaction – in other words, you burn.  She says it is gradual and after a week or so you get a pink tinge, then towards the end it turns read and you peel like a sunburn, and then have a “tan” in that area which fades
• Fatigue – although she says that happens in about half the patients and isn’t really that bad.
• Swelling and puffiness of the chest wall which cedes post treatments

Long Term:

• Weakening of the ribs, because we are radiating the chest wall and the chest wall is made up of your rib cage, you will have an increased chance of rib fractures, which she assures me hurt, but heal… expression on my face made her add but that is only if there is a big blow – not coughing or anything and only in 1-2%
• A section of my lung will be radiated and scar, but that “SHOULDN’T” affect my breathing or lung function but the scarring will show up on CT scans and in chest x-rays.
• My heart, specifically the front of my heart, will receive radiation because my cancer was on the left and the heart is on the left, but they use a breath hold technique to try to mitigate that.  So you take a deep breath and hold it, the expanded lung pushes the heart backwards.  I get it, but doesn’t that expose new parts of the lung to radiation and scarring?  Yes but not as much as you think… because the lung is expanded.  😐
• Fibrosis to the soft tissue underneath
• Limited options for reconstruction – in other words, implants are removed as an option and they instead use your own tissue to reconstruct AND the side that was radiated will look different from the side that was not radiated.  This does not surprise me, as a) a good friend who has been through this warned me ahead of time and b) tissue that has had a burn scars and scars do not react like healthy skin.  So I tell her that the plastic surgeon I saw said I did not have enough tissue in my abdomen to rebuild both breasts and I am not wanting multiple major surgeries to recreate the breast.  Her recommendation was I see a different plastic surgeon.  Because…. ?  Somehow they find new tissue or will disagree with the first guy?  WTH?  This is the other reason I say if you are a doctor reading this – you are treating a patient… a whole person… not just the disease.

Remember, radiology will only reduce the chance of the cancer spreading to the chest and lymph nodes, not the chance of it spreading anywhere else.

Side note: the resident thanked me for letting him sit in on everything, he said that I was obviously intelligent, well educated and had done my homework and it was an eye opening day for him.  At least one person in the crowd appreciated the PITA patient.

A Decision:

So if you actually read all of the above and did not just skip to the bottom – you are a rock STAR!

After reviewing all the risks associated with the treatments and all the percentages swimming in my head – I will be treating my body which shows no sign of active cancer:

• Naturopathically.
• Talk with the surgeon about the oophorectomy.  I am not wanting more surgery, however, with an estrogen positive cancer it makes logical sense to remove the food source, it has a quantifiable result, and although this will also throw me into menopause at a early age, any conventional treatment would do that.
• Conventional monitoring with ongoing labs and imaging to compare to the good baseline that we have from pre-surgical pathology.
• Meditation and prayer.  🙂

Ultimately there are no simple clear decisions with cancer.  It is all based on percentages and statistical data that has no hope of accuracy with so many factors that play into each persons lifestyle, cancer type, cancer factors and risks, valid significant risks associated with each treatment.  Even studies specific to breast cancer try to get down to as finite a sample as possible and still there are so many factors that ultimately skew the data.

So… the plan is more hiking, and fewer doctor appointments.  I also plan to make a to-do list, not a bucket list, but a “things I want to experience and would make me happy list.”

With love,
-T