Making Decisions:
How do you make medical decisions? Well, there are lots of ways! I’m not an expert, but I’ve had a front row seat for years watching others close to me face life threatening situations and have to make tough, life changing decisions.
While DH and I are making some tough choices, we also have the luxury of a little time. Not always do you have that! Prayer without ceasing, is what one experienced friend shared with me. I also believe that then you must trust the Lord to lead and guide, direct circumstances and impress upon you what He would have you do. Then move forward, trusting in Him. Once you've made the best decision you can with the information you have. Then move on. Don’t look back and second guess yourself or others unless the Lord gives clear indication that you need to re-evaluate.
To make an informed decision, you need good information. Here are some information sources to consider:
- Start with your health care providers, they’re the ones staring at you. Good providers like I am blessed with, appreciate well informed patients. If they don’t want to answer questions or blow you off, find another health care provider.
- Research any terms you don’t understand, ask questions, go online.
- If you have friends who are knowledgeable in your area of medical concern, call them. If you know of others who’ve been through what you’re facing, call them.
- If you feel it’s necessary, get a second opinion.
- Research ways you can use natural healing remedies, if appropriate. BUT always let your medical providers know what you are doing and vice versa.
- List your options, the risks and consequences of each choice. Decided what outcomes you can live with and which ones you can’t.
- What is your life status? Do you have a family to raise? Are you struggling with multiple health issues? These are factors that affect your decisions. Make sure you have clear answers to these questions.
- Analyze your motives....yes this is important! Why are you doing what you’re doing? There are many reasons people chose or decline medical treatment. Understanding your motives may be more important than your options...it may clearly dictate WHICH treatment route you chose.
- Is there an ethical issue involved at some point in your decision process? If there is, identify it and resolve that issue first. Then the other decisions become easier.
While this is HARD for me, I've decided to chronicle the decisions we've made and why we made them. This is not a blue print, but an "inside look" for you to see how one couple made decisions. Faced with the same choices, you might make different decisions based on your specific situation and personal concerns about certain treatment options. Aren't you glad that we have freedom to choose?
Decision #0
Going for a mammogram regularly starting at 40.
- We were in the middle of RV living and only had established providers for the children.
- I don’t like being a patient...after 4 kids I was done for awhile.
- I thought I was low risk. Little family history, fairly healthy diet.
- No symptoms.
- I had one done in 2000 and it was fine.
Mammogram | Start Regular at 40 | Delay |
Good | Smile | Smile |
Bad | Caught in early | Big Frown!!! |
Decision: Didn’t do new baseline mammogram until age 44.
I ended up with a Big Frown!!! If I had gone in at 40 or 41, I would have been diagnosed with DCIS and had a whole different set of options available to me. By the time I got in, breast conserving surgery wasn't a wise option.
I ended up with a Big Frown!!! If I had gone in at 40 or 41, I would have been diagnosed with DCIS and had a whole different set of options available to me. By the time I got in, breast conserving surgery wasn't a wise option.
Decision #1
Do a biopsy now or wait 6 months for a second mammogram.
1. I have a young family. I am responsible to the Lord and my husband to maintain my health, so that I may be active in raising our children for the Lord.
2. The area of micro calcification that was most concerning was close to the chest wall, an indicator that it wasn’t just a normal calcification cluster. I didn't want to take the risk of anything spreading outside the breast.
3. If it was cancer, I didn't want to give it another 6 months to spread.
4. BIRADS score 4/6.
5. They couldn't positively identify the area of concern any other way.
5. They couldn't positively identify the area of concern any other way.
Outcome | Biopsy | Wait 6 months |
No CA (60-70%) | Smile | Smile |
CA (30-40%) | Caught now | CA 6 month advanced |
Decision: Do the biopsy. I was "caught now"
Decision #2
Bilateral versus left biopsy only:
1. If the most suspicious area was cancer and the secondary area wasn’t biopsied, I would be called back for a second biopsy. This would involve additional cost and delay in moving on to the next stage of treatment.
2. There is the risk of "beta error". That means the first area of concern had a negative biopsy result, as a result, the second area of concern wasn’t biopsied and it was cancerous. If that happened, I could go undiagnosed for at least a year until my next mammogram.
3. When I weighed the risk, and potential cost in dollars and time, I decided that as a Mom with a growing family, it was in my best interests to address all the issues up front.
Decision: Do a bilateral biopsy.
It’s cancer. Praise the Lord for decisions 1 and 2! Dr. H told me, that given the size of the area involved, I have probably had this cancer 3-4 years. GULP...Decision 0 wasn’t a good one. Can’t fix it...move on.
Decision #3
It’s DCIS, a non-invasive cancer. Should I treat this medically, naturally or not at all?
For us, this is the ethical decision that we faced. Why? Because of our life status. We have young children still at home. As I read Scripture and the Spirit of Prophecy, I am obligated to raise my children for the Lord, so long as I am able. To me, that means, doing all that I can to fulfill my God given responsibility by maintaining my health.
I personally know three women in a similar life situation, who’ve stood at this point, and made radically different decisions. One chose not to treat her cancer, the other two chose to do everything medically and naturally they could. The first friend died 4 years ago when her children were 8 and 11. The others are alive, one just celebrated the 5th anniversary of her diagnosis and the other, her first anniversary. Each woman made tough choices, they all took different treatment routes.
I still grieve the loss of my friend, but I promised myself then, that if I ever faced breast cancer with children at home, I would fight with everything I had.
Decision: Treat medically and naturally.
Decision #4
Left breast conserving surgery or Left breast mastectomy.
Breast cancer takes several forms and stages. Within each cancer, based on your individual pathology reports the cancer is often graded in terms of aggressiveness and other factors. Then the spread of the cancer is staged or measured on a scale of 0-4. 0 meaning that it hasn’t left the area of origin and 4 meaning that breast cancer has spread to other organ systems in the body. There are many great websites that provide information on this. As you can see, cases start to fall into groups for treatment protocols.
For DCIS, it is often detected early, thanks to mammograms. It is usually a Stage 0 or Stage 1 cancer which is great news. Depending on it’s pathology, a standard treatment protocol is to do breast conserving surgery (lumpectomy) and follow that up with radiation therapy and then endocrine therapy. This is standard treatment protocol for DCIS lesions <3cm. We initially thought this was where we were. .....Then we met Dr. H and saw the mammograms for ourselves.
In my case, the pathology report contains some words I don’t like, this DCIS is not to be messed around with any longer. Also, the area of DCIS is 7cm in length and involves almost 1/4 of my breast. Once the surgeon takes enough tissue to ensure “clean margins” and removes the nipple and areola, there isn’t enough left for a plastic surgeon to work with and then I’m still faced with radiation therapy on the breast tissue that remains. Dr. H recommended a left mastectomy. OUCH!!!!! Why did she recommend so drastic a procedure for a Stage 0-1 cancer?
- There aren’t many better options out there for DCIS with proven clinical results. And yes this is FRUSTRATING for physicians as well as patients. I went and read the clinical journals and treatment criteria protocols myself.
- By doing a mastectomy, as long as the sentinel node biopsy comes back cancer free, I will not need to do radiation or chemotherapy.
- By removing all the breast tissue and doing what is called a skin saving mastectomy, I could chose to have reconstructive surgery immediately and the plastic surgeon could work with my own breast skin. That’s a big plus if reconstruction is important for me.
Decision: Left breast mastectomy.
Why?
- I promised myself in decision #3 to be aggressive in treating breast cancer. I don’t really have a choice. Dr. H tells me a lumpectomy is not a good option, and she's not the type of doctor to throw away good tissue if it isn't necessary.
- By doing this, I avoid radiation. This is important for me as the area to be radiated would be the left chest where the heart is. With my family history, I don’t want anything messing with my heart.
- Avoiding radiation, significantly reduces the disruption to our family life. If I could have saved a significant portion of the breast, we would consider this. It's a cost/benefit analysis.
- Radiation may only be used on an area of the body one time. I'm saving my one time for next time....if I should ever need it.
Decision #5
What do I do with the right breast?
- It contains micro calcifications, I will be closely monitored for years, every new micro calcification pattern will be analyzed. Do I want to live with that?
- The biopsy, MRI and ultrasound all show negative for cancer. Thank you Dr. W and Dr. H for giving me that peace of mind. Why throw away good tissue? Let me be clear! My physicians are NOT advocating this. BUT it is my choice.
- The BRCA1 BRCA2 genetic test was negative. (Hooray!) If this was positive I would have a 40-60% chance of breast cancer developing in the right breast.
- I still face a 12% lifetime risk of developing breast cancer in this breast. I’ve already “rung the bell”, only 2% of women under age 50 are diagnosed with breast cancer. If I remove the breast, my risk drops to 1-2%.
- If I leave this breast, I will probably be put on endocrine therapy to reduce the risk of breast cancer developing as my cancer is highly estrogen receptor positive. While endocrine therapy benefits outweigh the risks...there are still risks and side effects.
- Symmetry. Our bodies are designed to be in balance. Losing one breast throws that balance and symmetry off. (Artsy type of issue but very important to some people.)
- As one survivor told me, when she started seeing the bills, she decided she wasn't going to risk doing this again!
This is a horrible decision! We wept over this and prayed too. I praise the Lord for a physician friend who returned my call, when I needed his counsel most. He talked me through the logical steps of making this decision, based on what was most important to me. I decided to proceed with a bilateral (both sides) mastectomy. DH and I both wept. If I should ever develop breast cancer again, I want to look my family in the eyes and honestly say that with God’s help, I did everything I could. This was not an ethical decision! This was a decision based on my answer to the ethical question in decision #3. And I was at peace.
Outcomes | Lumpectomy | L MX | Bi MX | Do Nothing |
Other | Not an option DCIS 7cm, 1/4 of breast | |||
Good | Get it all No recurrence | Get it all Reduce risk to 1% | Happy | |
Bad | Recurrence on L side (1%) New CA on Right side 12% risk. | Recurrence either breast (risk is 1%). | Spreads/Die Not an Option! |
Decision #6
Immediate or delayed reconstruction?
Oh boy...this decision was the worst one yet. Funny, how this decision gave me more grief than the mastectomy decision.
You can google the benefits of immediate or delayed reconstruction. For me it came down to this:
1. Immediate reconstruction is less surgical risk and better outcomes than delayed reconstruction.
2. I decided I wasn't ready to make a "final" decision on reconstruction at the same time that I was processing cancer. AND dealing with cancer must be top priority.
3. I wasn't going to let my plastic surgery decision dictate where I had my cancer surgery. Dr. H. is tops. I'm not likely to find better surgical care elsewhere. Cancer care comes first.
4. I did want to preserve my skin using a skin saving mastectomy, but to do that, some reconstruction had to be done, or the skin would die.
5. I wanted to keep as many reconstruction options open for the future as possible.
6. According to federal law, insurance companies are required to treat reconstruction just as they would any attempt to restore the body from a deforming injuring.
I wavered ..and at one point told my breast surgeon I wasn't going to do reconstruction because there just wasn't anything out there that was acceptable to me. I'm not defined by my figure. That wasn't and isn't an issue for me. I really struggled with this as I was comfortable with the bilateral mastectomy decision. WHY Lord? As I prayed and cried for 36 hours, two thoughts became clear. 1. I needed to have some trust in my physicians (they would be amazed to read this). 2. I needed to leave all the options (including do nothing) on the table and make a final decision later. SO I reversed myself and chose to do immediate reconstruction. .
Oh boy...this decision was the worst one yet. Funny, how this decision gave me more grief than the mastectomy decision.
You can google the benefits of immediate or delayed reconstruction. For me it came down to this:
1. Immediate reconstruction is less surgical risk and better outcomes than delayed reconstruction.
2. I decided I wasn't ready to make a "final" decision on reconstruction at the same time that I was processing cancer. AND dealing with cancer must be top priority.
3. I wasn't going to let my plastic surgery decision dictate where I had my cancer surgery. Dr. H. is tops. I'm not likely to find better surgical care elsewhere. Cancer care comes first.
4. I did want to preserve my skin using a skin saving mastectomy, but to do that, some reconstruction had to be done, or the skin would die.
5. I wanted to keep as many reconstruction options open for the future as possible.
6. According to federal law, insurance companies are required to treat reconstruction just as they would any attempt to restore the body from a deforming injuring.
I wavered ..and at one point told my breast surgeon I wasn't going to do reconstruction because there just wasn't anything out there that was acceptable to me. I'm not defined by my figure. That wasn't and isn't an issue for me. I really struggled with this as I was comfortable with the bilateral mastectomy decision. WHY Lord? As I prayed and cried for 36 hours, two thoughts became clear. 1. I needed to have some trust in my physicians (they would be amazed to read this). 2. I needed to leave all the options (including do nothing) on the table and make a final decision later. SO I reversed myself and chose to do immediate reconstruction. .
Decision #7
What type of reconstruction?
There are two basic reconstruction categories in common practice today. Implants or a reconstruction using muscle and or tissue from the abdomen. They both have multiple choices. They each have benefits and draw backs. I felt like a yo-yo for a week, weighing options, risks and what fit with our lifestyle, not to mention looking at my inner motives.
The word "grateful" is inadequate to describe how I feel about the two plastic surgeons I interviewed. They are both professionals and provided a wealth of information and answered many questions. They were willing to send me out of the area to others, if they were not able to do what I wanted done. I must also thank another physician friend who talked me through the philosophy of reconstruction from her medical perspective. What a blessing she is!
In the end, the type of reconstruction is personal preference. I've chosen to do an implant reconstruction right now to literally save my skin for future decisions.
Why?
1. Implants can be easily removed in an outpatient setting, leaving other options available.
2. This has the least impact on my body and does not mess with my abdominal muscle structure.
3. This is the least surgical, infection and complication risk.
4. This option reduces my recovery time significantly over a tissue reconstruction.
5. This keeps all options open and allows me to evaluate later after I'm done processing cancer.
Future decisions regarding follow up procedures, natural healing methods and cancer risk reduction strategies will be posted as we go through this process.
There are two basic reconstruction categories in common practice today. Implants or a reconstruction using muscle and or tissue from the abdomen. They both have multiple choices. They each have benefits and draw backs. I felt like a yo-yo for a week, weighing options, risks and what fit with our lifestyle, not to mention looking at my inner motives.
The word "grateful" is inadequate to describe how I feel about the two plastic surgeons I interviewed. They are both professionals and provided a wealth of information and answered many questions. They were willing to send me out of the area to others, if they were not able to do what I wanted done. I must also thank another physician friend who talked me through the philosophy of reconstruction from her medical perspective. What a blessing she is!
In the end, the type of reconstruction is personal preference. I've chosen to do an implant reconstruction right now to literally save my skin for future decisions.
Why?
1. Implants can be easily removed in an outpatient setting, leaving other options available.
2. This has the least impact on my body and does not mess with my abdominal muscle structure.
3. This is the least surgical, infection and complication risk.
4. This option reduces my recovery time significantly over a tissue reconstruction.
5. This keeps all options open and allows me to evaluate later after I'm done processing cancer.
Future decisions regarding follow up procedures, natural healing methods and cancer risk reduction strategies will be posted as we go through this process.
