breast conference

I will be glad when I get caught up on all this – of course I wasn’t in a mental state to start writing all this down when it was happening, and also, I wasn’t ready to put it up on The Intarwebs until everyone who needed to hear about it from me heard it from me.

On the way out to the car, the social worker called, so I didn’t get a whole lot of notes on what happened there. This is, again, April 2, two weeks ago today.

But she asked me a lot of stuff about my financial situation, my work situation, whether I had people to support me and give me rides, and stuff like that.

She also gave me some support information. There’s a general cancer support group that meets on Tuesdays, from 1:30 to 3:00. She gave me the phone number and log-in for that, which has been moved to a virtual meeting due to COVID-19.

There is also a specific breast cancer focused group, which I think I am a little more interested in.

She gave me some information on an online general Cognitive Behavioral Therapy resource, which I said I would sign up for (I did – that’s for another post). She also said KP provides one-on-one counseling if I need that. I told her I might, and that I was still just trying to find my bearings with all this.

When I went in to the surgeon visit I got a couple of folders full of information. One is a pink folder that had information on the support groups, plus the business cards of my medical team. The other was a giant envelope with a bunch of instructions and information on surgery. Since I’ve never had surgery before that was very interesting to have.

After that we got home and I chilled out until after lunch. The surgeons told me that they have what they call a Breast Conference during the noon hour, when everyone on the team gets together and talks about me, and about the best course of treatment given my situation.

Next up was the radiation oncologist. He mentioned that he had just gotten out of the Breast Conference so he knows what’s what with the team.

At that point it seemed like the most likely path would be a lumpectomy followed up by radiation therapy, plus hormone therapy given my good hormone receptor results.

They pretty much always follow up a lumpectomy with radiation therapy, Radiation therapy significantly reduces the chance of a reoccurrence of cancer. If you have a mastectomy they usually don’t do radiation, unless there is lymph node involvement, or it has invaded the chest walls, or it is very large.

If you have radiation it is 5 days a week for 4 to 6 weeks. The radiation itself is targeted just to the breast. Generally there are no side effects at first, but after a while you start getting low energy and fatigue. He said it would still be ok to drive, and encouraged exercise since that might make you feel better.

The other main area of side effects is skin effects – skin irritation, pinkness, and tightness. And there would probably be soreness at the end.

Long term side effects include thicker skin and possible shrinkage of the skin and breast tissue. This is not great news for someone who already has a small rack, but I figured that being alive and not getting a recurrence is worth any cosmetic weirdness.

Since the radiation does affect the very top of your lungs, there can also be some lung injury, but he said this was quite rare. It can also make your bones slightly weaker. He said 5-10% of people are still sore 6 months later.

Radiation generally starts about 4 to 8 weeks following surgery – you need to heal up first. And that also is if you aren’t having chemotherapy.

Each treatment lasts about 30 minutes. Most of that time is taken up in getting you set up just right. You can’t listen to headphones because, you know, radiation. But it’s only like 10-15 minutes of just sitting there, plus, he said, they have music playing. Totally manageable.

He said also that before the radiation therapy starts, he’ll do a Design Radiation Plan, where he does a CT simulation. Then you also get a couple of tiny tattoos on your skin to help them align you just right for each session. Also, he said a radiation oncology nurse would meet with me about skin care recommendations to help protect my skin as much as possible.

So that was a ton of information – he took up the full 45 minutes!

The regular oncologist called next. We talked a little bit about the genetic testing, and then he asked me a bunch of questions about my general health.

We then talked about my Dense Breast Tissue. He recommended a breast MRI so we could get better information about what’s actually in there, and I agreed, so he put in an order for that.

He said the Breast Conference would meet again next Thursday, hopefully with my genetic screening results plus the MRI results.

Because of COVID-19, they aren’t doing any “elective” surgeries right now (I feel really irritated that breast cancer surgery is considered ELECTIVE, what the fuck?). Because of that, he said he wanted to start me on hormone therapy while we’re waiting for surgery. He thought he would go ahead and have me start that after the next Breast Conference.

For hormone therapy, you have to come to the clinic to get some shots. One is Leuprolide, which shuts down overian function, and then something called Anastrozole, which shuts down estrogen adrenal glands. So what it’s doing is suddenly putting you in menopause. Side effects are, basically, the onset of menopause.

It occurred to me that one side effect of this treatment might be no more migraines! Since Dragnhild quit getting them after she hit menopause.

A long term side effect is possible osteoporosis. That would suck, but at least now I’m starting from a good bone density situation so that might not be as bad for me as it would be for other people.

He said that there might be a role for chemotherapy, but that is usually indicated for larger tumors, or when there is lymph node involvement. So we won’t really know for sure until they do the surgery and see what’s what.

He said he would schedule a phone visit with me after the next Breast Conference, and in the meantime I would get the breast MRI.

That was all for the doctors. I next spoke with Lizzie, my Nurse Navigator. We chatted a little about the doctor day and what might be next. She then gave me the number to call to schedule my MRI.

I called them, and it turns out they do MRIs 7 days a week. So mine was scheduled for Sunday morning. They told me: Wear cotton undergarments. No jewelry. And asked a bunch of questions about whether I had implants or medical devices or bullet fragments anywhere. Fortunately I don’t have anything like that.

I was exhausted by the end of the day.