To radiate or not to radiate.... That is the question

My last chemo is this coming Thursday and so we are ready for the next step in this process. This is has been the hardest decision in this whole process. And we have had plenty of hard decisions:

We had to decide whether to do chemo first and hope that the tumor would shrink enough to do a lumpectomy versus a mastectomy. We opted for the surgery first. I wanted to cancer gone and we wanted to be aggressive. 

We had to decide whether to opt for a double mastectomy. Many doctors recommend this step since most women end up with cancer in the other side and have to repeat the process. Also you don't have to have mammograms so you remove the emotional stress. And you have symmetry. Otherwise you are 60 and have a perky left side and a saggy right side. So we chose to do a double mastectomy. This would seem to be the hardest decision. But once I decided to do this and be aggressive I was content.

We had to decide whether or not to try nipple sparing techniques. This decision was taken out of my hands on the day of surgery when my doctor told me that there wouldn't be enough remaining tissue to keep blood supply there and he preferred to be aggressive and not run the risk of leaving any tissue behind. 

We didn't get to chose to do chemo. They feel confident that the surgery removed all the cancer in the lymph nodes and breast, but based on my age I had to go through chemo. Had I been 70 or 80 I could have chosen not to do chemo. But my oncologist did not give me a choice. So we did it and now I'm almost done.

And now I am faced with a decision: have radiation or not? 

It is hard when you have turned most if the decision making choices to the experts and just trust in the doctors to tell you what to do. And now I am faced with having to actually make a hard decision. Why? 

Here is the information on having radiation after a mastectomy. I am pulling the information from breastcancer.org:

These factors are associated with a high risk of recurrence after mastectomy. Radiation may be recommended if any of these factors are present:

• The cancer is 5 centimeters or larger (the cancer can be 1 lump, a series of lumps, or even microscopic lumps that together are 5 centimeters or larger). MY TUMOR WAS NOT THIS BIG
• The cancer had invaded the lymph channels and blood vessels in the breast. MY CANCER DID GO INTO THE LYMPH NODES
• The removed tissue has a positive margin of resection. MY TISSUE ALTHOUGH IT HAD CLEAR MARGINS BY THE TUMOR THERE WAS A POSITIVE RESULT IN ONE OF THE MARGINS.
• Four or more lymph nodes were involved OR, for premenopausal women, at least 1 lymph node was involved. I AM PREMENOPAUSAL AND IT WAS POSITIVE IN ONLY ONE LYMPH THAT THEY REMOVED.
• The cancer has invaded the skin (with locally advanced or inflammatory breast cancer). THIS DOES NOT APPLY TO ME.

So I meet 3 of the 5 qualifications for radiation. Because I am in a gray area for all considerations of receiving radiation. There could be remaining cancer cells in the lymph passage. And these could travel. Chemo is targeted for the entire body. Radiation is targeted to the tissues just where the cancer was found. The would be radiating the armpit, left chest wall, and collar bone area up to the neck. 

One doctor I met with gives me a 15% chance that there are lingering cancer cells that could redevelop. Radiation would lower that percentage to 4%. Another doctor said it was a 20% chance that would be reduce to 8%. I knew that there were many long term side effects from radiation and so I chose to see two different doctors.

For one of my consults I chose to venture out of Huntsman and receive a consult from Gamma West. Gamma West has some advantages over Huntsman in a few areas. But I also saw a radiation oncologist at Huntsman.

There are short term side effects and some potential long term side effects. A few of the short term side effects are fatigue and sunburned blistering skin. But the treatments are only for 33 days. They lady about 20 minutes. And it is every day Monday through Friday until those 33 days are complete. It can cause the skin on that side to thicken and shrink which puts final reconstruction off for at least 3 months after the completion of radiation. 

One possible side effect long term is cardiovascular issues or heart disease later in life. It also can create scarring in the bottom of the lung. Gamma West does provide a lower risk for these side effects because of this additional imaging. It could enhance issues with lymphedema. There is a risk of lower bone density for the bones in that area. A few ribs and my collar bone would be the bones that could be compromised or weaker over time. And there is a risk that radiation could produce a different kind of cancer twenty years down the road. But these are all possible consequences. 

Financially I have met my out of pocket and the radiation is covered by my insurance. 

Emotionally I would love to be done with this and to be done in a matter of weeks would be so nice. But I am really just adding one more month if I do radiation. And would I sleep better knowing that I have done everything and tried everything? If I choose not to do radiation I will still be getting regular check ups and hopefully would identify and concerning lumps or areas that may arise.

Physically I think it won't be fun but it will be easier than chemotherapy.

Every day I have different thoughts. There are many pros and cons that come up in our discussions. We have been aggressive thus far and do we feel confident that it has been enough? Or do we continue to be aggressive and lower that percentage as much as we can. It has been six months. What is one more month? I can get through radiation. But is it worth the potential risks?

So I have a few weeks to continue to weigh my options. I love Huntsman but Gamma West does have some benefits. 

We are researching and praying and discussing. And when we have had enough we table the issue and come back to it the next day. We are welcome to advice through private messages, but what it really boils down to is that I have to make a decision and it is not an easy one. I know what my gut is telling me but I need my heart and brain to join forces.