cancer – day 167

So, yesterday. (Argh, the painful shaky hands neuropathy thing is going to be a severe bother today, I can tell already.) Yesterday I met with the new radiation oncologist.

This replacement radiation oncologist was actually just for convenience of keeping everything local to Sacramento now. When I first met with the first radiation oncologist, Brian Goldsmith, six months ago, I still thought I was going back to South Dakota for chemo and then returning home (Volcanoville) for radiation, which would have meant a daily drive 45 minutes each way from home to the radiation treatment and weekly appt with the radiation oncologist. Then when we decided I was going to stay in Sacramento for everything and live here with Mark for all the cancer treatment as well, then having radiation in Cameron Park (which is also 45 minutes away from Sacramento toward home) still involved the inconvenience of requiring 90 minutes a day of drive time. My original radiation oncologist is based in Cameron Park and does not travel to other facilities, though the medical group he is with has seven different facilities in the region, one of which is at, duhn-duhn-dunhhh, Sutter Cancer Center. So I called the Sutter Cancer radiation center and asked if I could switch my radiation to their location, which was no problem whatsoever, the only open question was whether to stay with Brian Goldsmith in Cameron Park and drive 90 minutes each week to see him for the weekly follow up, or whether I could switch to a doctor located at the Sutter Cancer Center and be able to do my doctor follow up appointments at the same place as radiation like everyone else does. So Goldsmith referred me to another radiation oncologist in his medical group, a woman this time, who is also a breast cancer specialist.

I was a little excited about the idea of having a female specialist, I just like the idea of it. I got that appointment set up and promptly forgot about it because it was on the calendar and done and I was still in some of the worst part of chemo side effects at the time. So when the confirmation forms came in the mail saying my appointment was with some guy named Andrew Yu, I had to call them up again and ask that they make my appointment with the female doctor that Dr. Goldsmith had actually referred me to, Dr. Janice Ryu.

Tenacious C is still alive and kicking. 🙂

OK, so the actual appointment was yesterday. Mark couldn’t go with because he had a conference call (that deserves it’s own complete blog tomorrow) and it was going to take most of the morning. I was actually gone from 9AM until noon yesterday, this all just ate up so much time.

And here’s the skinny on what I learned yesterday:

The first interesting tidbit of information yesterday was that Dr. Ryu knew the name of the replacement for Dr. Lombardi, and she had wonderful things to say about this new Dr. Rohatgi, who is a well-respected breast specialist medical oncologist in Sacramento. So that was reassuring to hear about, and hopefully I’ll meet the new medical oncologist soon.

So, we’re doing radiation to close off (as much as possible) any potential that the cancer will recur in the same breast. We need to do this because I had a lumpectomy. The only way we could have guaranteed not having a breast cancer recurrence in the right breast (where I had surgery) or the left breast (which we didn’t operate on) would have been to have a double-mastectomy. Thayer didn’t recommend that, and it didn’t have a lot of appeal at the time, so I did the single right-side lumpectomy, knowing that I would have to undergo radiation treatment to that side after chemo. The radiation kills off any lingering cancer cells in the right breast that may have slipped through the margin they made during surgery. In my case this is especially important because Dr. Ryu (the new radiation oncologist) feels the 1mm margin Thayer left is too tight given that it was deep in there right on my chest wall. This tight margin means that she is going to do 36 treatments instead of 33. So instead of 6-1/2 weeks of radiation, it’s 7 weeks and a day, just a few days more treatments to make sure she gets those extra slices where the margin was so close to my chest wall.

This means though that I will be getting a little radiation to my chest wall and probably a hair of my right lung, which has implications I’ll get to in the side effects in a minute.

We also talked a little bit about the hormone therapy I’m going to have to do, with Tamoxifen. I’ve been wanting to NOT do tamoxifen, partly because it’s known to cause secondary cancers and because I don’t want to have my body forced by drugs into menopause, but Dr. Ryu was insistent that the majority of risk reduction in my cancer treatment is coming from tamoxifen, much more so that from the chemotherapy or radiation treatments. And I’m going to be on that more than five years. There aren’t any other hormone therapy options for me because of my age and the fact that I’m nowhere near menopause yet. For post-menopausal women, there are some other drugs they can try like arimidex and raloxifene, but those haven’t shown any benefit at all for women my age, premenopausal. So, tamoxifen it is. Going to be doing a lot of reading on that, once we’re well under way in radiation.

Tomorrow they’ll tattoo me with these blue freckle markers and then run a simulation to determine exactly what my 3-D body image will be for radiation, and then they’ll run mathematical models over the next two weeks to simulate where the radiation beams are going to intersect in me for the radiation. On my skin it will end up being a square field from below the middle of my collarbones to just below the breast bone on my right side and then around to my mid-side on my right side. They make these little blue tattoo marks so they know exactly where they’re radiating every time and it’s completely precise.

After all the other scarring, having a little blue tattoo freckle in the middle of my chest just below my collar bones doesn’t bother me much, at least not right now before I’ve seen how bright this blue really is. Maybe we can make ado about the tattoos in our Halloween costuming somehow, who knows. Dr. Ryu said a lot of women get upset about the blue tattoos, and I guess it’s going to be hard to cover up a blue freckle with make-up, but hell, I’m still in wigs and drawing on eyebrows and drawing in eyelashes, what’s one more little mess of trying to cover up a blue freckle with more makeup? Except having to buy more makeup.

There are “acute” side effects that everyone gets with radiation, and then there are other non-acute side effects that occur later. In terms of acute effects, I’ll get a square sunburn over the entire radiation field. Because I’m fair, they’re expecting the skin reaction to be fairly severe with heat rash and itchy soreness and very dry skin that I have to put rash cream on. It’s really pretty miserably uncomfortable, from the sounds of it. I had a sunburn so bad it rashed once, and yeah, miserable is about the only word to describe how it felt. Just this constant burning pinged by more intense burning with the rash. The sunburn kicks in fully by the second week of radiation, and will turn to tan a few weeks after all radiation is done. (This is also when I should start growing my hair back after chemo, btw.)

The other acute side effect is fatigue, which is worsened by the fact that I did chemotherapy and am already at a fatigued level from which the only direction I’ll be traveling is to more severe fatigue cumulatively through the process. I’m trying not to be too grim, but at the same time, I want to be realistic about this, especially since it has such huge implications for whether or not I should work during radiation or instead stay focused on the treatment and recovery and just deal with staying on full disability throughout treatment to give my body the very best chance to heal as completely as possible, without work stress and busy-ness.

There are going to be more blood draws, week 1 and week 4, and after, so I’m keeping my port for those rather than have the port-removal surgery now and have to get poked for the blood draws (which was really why I got the port in the first place, it hurts my arms like hell to get blood drawn, and the sight of blood makes me faint and nauseas (ever since Artie died, which is the subject of a future journal entry).

Then there the non-acute side effects that don’t happen to everyone. When she told me that I have about a 1 in 100 chance of having these side effects, I was not reassured, because that’s a much higher probability than the chance that I would ever get breast cancer at my age in the first place. But whatever, 1 in a 100. At six weeks, I could develop a severe pneumonia or bronchitis or just a bad flu, which is an allergic reaction to the radiation. My right lung could also be specifically affected, especially with the margin thing and my radiation needing to go so close with the chest wall. At 6 months there can be another allergic reaction that’s more like a bad achy-ness that lasts a month or longer and can generally be addressed with motrin.

In terms of physical changes, the breast skin thickens, which makes the breast smaller and pulls the skin up so it’s higher than the other breast. Hadn’t thought about radiation making me more deformed that I already am from the lumpectomy. In hindsight, a skin-saving mastectomy with full reconstruction may have been the better way to go, rather than the lumpectomy. The radiation also makes the encapsulation of the reconstructed breast go up, makes it more firm and not as pliable, and also raises the breast further, and if it’s bad enough, all that means a second trip to the plastic surgeon. Eh, well, cross that bridge when we come to it.

The big down side of radiation is that we know it causes cancer. So to prevent a breast cancer recurrence in the breast in the short term (the next 5 years), we do radiation, knowing this fact. We know that at some point, maybe not for 20-30 years, I’m going to have a cancer appear (recurrence) somewhere else. That’s the risk everyone faces with radiation, it’s just not always as big a deal because most people with cancer find it much later in life, and so worrying about developing a second cancer when you’re 90 or 100 doesn’t have quite the weight when your countdown starts in your 30s.

But there’s a cold hard fact here that I’ve been told by my doctors and read about, and it’s a simple one. Once you have cancer, you have cancer. Cancer has learned how to grow in your body. And if your first cancer is at a young age, then your cancer is going to come out of remission at some point in your lifetime, and chances are that recurrence will be a more aggressive recurrence, which is why we do everything possible to stay the inevitable as aggressively as possible as early as possible. We do everything we can to detect the recurrence as early as possible, and that is my life now. I have cancer, it’s in remission. For as long as we can keep it that way. But it will come back. Maybe not for 20 years, 30 years, but it’s there. It is what it is. And for the cancer patient, every single day of remission is another day of grace.