Endocrinologist and Generalist

I went back to the endocrinologist's. She was a little impatient with me this time. Problem is, when I try to ask about anything, I get a speech about how it isn't cancer, how it isn't going to be cancer, how this is "no big deal" and so on.

Can a former cancer patient ask about their thyroid without jumping to conclusions? If I had never had cancer, I might have been given some information. But given my status, I'm reduced to being told that it's not cancer-related and I don't get to know any more than that.

I did manage to find out that this might be the leftover from a previous infection. I mentioned the H1N1 and otherwise, I have no interesting medical adventures to report.

She's not convinced that I'll even need 6 month screenings, something that wouldn't have bothered me anyway. She said if the numbers are stable, we can go to yearly. I made an apt. for the end of January and already have the Rx for Dr. Burned.

I didn't recount the Jealous Radiologist story. I told the GP about it and she rolled her eyes. "Any radiologist can do a thyroid scan!" I'm so not going to push this. I'm just doing what my endocrinologist wants and I can almost as easily go to Dr. Burned.

I also went to see my GP for my heel. It kind of hurts. I wanted to hear about some kind of cure but I got an explanation (she she actually explains things) that it's another age-related quirk. Sometimes a sliver of bone escapes. I can get inserts for my shoe. I said, no, I want some aggressive, invasive procedure that will get rid of it for good. She laughed and said, no luck!

She also isn't too supportive of the MRI. This is a change of heart. This could be a problem with the French Social Security system. But she did give me a Rx for the heel (that has no real cure) with a comment that now I can go back to Dr. N. and talk about my MRI!

I haven't had the courage to do that yet. I drive by there everyday and I'm so sure they're sick of me by now! 

BRCA testing, wasn't that an interesting cultural experience??

Can I do anything normally? It's like this whole cancer journey, along with all the usual scariness and downs... I have to throw a non-native language and other culture into the mix as well. Because we weren't already having enough fun!!

I had this fantasy that in the World of Science and Medicine, that things were pretty much the same. How wrong I was...

First of all, I happened to be assigned Friday the 13th on a full moon to do my BRCA testing. I'm not one to get too excited about these things but it still rated high on the creep-o-meter.

But as I walked up to the building, I noticed something different. I joked about having to wade through a cloud of smoke to get into the Cancer Center. Not a cigarette nor ash to be seen. The smokers were all gone. It looked eerily empty, void of people in the clear air. Then I saw the big No Smoking sign with the fines listed. Okay, things change...

I saw my same reception lady. I asked her about the MRI and confirmed with her that I can't waltz in with a "Dr. N. told me to come." Um no. Get a piece of paper. Ask your GP, or him, doesn't matter. Just having an apt. doesn't cut it.

I brought a reminder notice for my apt. since I didn't really have any doctor's orders. I also confirmed that this is all paid for. Yes. Related to my cancer treatment, it's covered.

She then gave me kind of confusing instructions. Follow the violet spots on the floor and wait in the violet waiting room. No one was in there. I actually missed it and radiation sent me back. I happened on the MRI machines. Apparently, there are several with "IRM" (French for MRI) on the doors. Was it on the ground floor? I couldn't remember. Then I stopped in front of the door where I got the news from Dr. S. about the second tumor. Kind of stopped me in my tracks.

But then I wandered the hallways. No "Genetic Oncology" sign anywhere. No mention of Dr. F. who's in charge of it. Just blank doors...

Then I'm realizing that I need to visit the restroom but with no one else in the room, I was too nervous. I stopped someone in the hall and she confirmed, yes, I was in the right place. Just wait.

Then a youngish looking doctor came in and asked my name. I shook her hand and headed into the room next door.

There were three very young doctors, none of them Dr. F. One was a geneticist, actually a Ph.D. and the other, an oncologist. The blond woman was an "onco-psychologist", a cancer psychologist??

I was curious whether they'd give me a big speech or whether they'd prod me to see where I was with it all. I got the feeling I was being prodded so I put the articles on the table that I brought and we just started talking. Did I have anything about my cancer? Ugh no. Bad girl! No one told me... didn't think it... I can tell you... IDC, 15%, estrogen and progesterone positive, HER2 negative... and so on. Did I have chemo. I pull on my obviously been there awhile hair and said no. It was caught early enough AND the pathology was good.

Did I have my sister's results? No, she was given them over the phone. No piece of paper. What about her cancer. Um, no, I don't have that either. Didn't realize it. Could have is someone had TOLD ME. Tried to not sound scold-y.

The geneticist pulled out the family tree that he had made of my 6 page questionnaire, which was sitting on the table. In the middle, were the Robinsons, no first names but the couple who came from Russia. I pointed this out. Then they moved over to the cousin who died. Her brother also had lymphoma. Do you think they're connected? The oncologist said that they didn't know. It wouldn't be a strong link though.

I did mention that there were three sisters. One lost a daughter to BC and one had a granddaughter (me) with it. All three sisters lived to ripe old ages without either BC or OC (ovarian). There were other female relatives but only the two cases.

The geneticist asked me about what I knew about how this mutation works. I told him that I saw a graphic on a documentary of a woman walking two, not dogs but chromosomes. It explained that everything works fine, except when something prompts the cancer, she doesn't have the other gene to protect her. Only one works and if that fails, she's in trouble.

Not sure if it was the best graphic but it did help.

He had another one, that was actually better. It showed little circles divided in thirds with different colors. The "normal" person starts with clear circles. The person with the mutation already has one third of the circle colored in. Then, other colors were added and that was supposed to represent cancer. With the affected person, basically the mutation, represented as the already-colored in area, let cancer skip a step, filling up the other two areas faster than in the normal person.

I asked about what I had read, that different mutations carry different risks and they confirmed that. Also, the risks for men, which the geneticist said right away, were far less of a risk than the BC/OC risk in women with the BRCA mutation. The possibility of passing it on to his children is the greater concern.

At one point, he even called it "bra-ka" like we do in English, instead of spelling out B R C A like they do in French letting me know he knows this one (later I read on his Linkin account that he studied in Oregon but he didn't mention this). Everyone has to hide their English from me!

Then the tricky subject-timing. How long? Eight months to get the results. In some places, the geneticist said it's 18 months. Yikes! They sort of expected my shock. "I'm hoping that if you get a more pressing case..." Yes! yes, they assured me. It's rushed through but not my case. I'm not any emergency. Fine. I accept that but... and here's where my negotiating came in.

80% of Ashkenazi women who test positive for BRCA have one of three mutants. The most common is the 185delAG, also the 5382insC both BRCA1 and the BRCA 2 mutation 617delT. I showed them an article on this.

Logically, if I'm positive, I will be one of these three. The geneticist said that there are thousands, almost an exclusive mutation for every case they get. But with the Ashkenazi population, it's not the same deal.

"Where is this lab? Where is it sent?"

Nothing is sent anywhere. Fourth floor! "So it's right here??" yes, and it's public, no outside private lab involved. They also mentioned that I would have access to my genetic information for life. No copyrights? The nodded, obviously familiar with the controversy in the U.S. with a private lab that does the BRCA tests.

So I put the idea out. What if it's proposed, that in my case, if positive, I'm more likely to have one of these three. Wouldn't that save them a whole lot of time and energy?

They look at each other and nod. "But we still want to do the whole sequence on you, just in case."

"Great news. But do you think there's any way I could get a preliminary result on these three. Please make it clear that I fully understand that it would be a preliminary result, and not definitive." (Knowing that's what the lab would worry about). That went over just slightly less well.

"The only problem is that we don't just call you. You'll come in for the results, either way. So whether we need you to come in just for this..." Honestly, I'm fine with a phone call, especially if it's negative. They kind of looked at each other. "Let's see what the lab says first!" I said brightly and everyone nodded. Change subject!

Now they wanted to discuss the "what if" of a positive test.

"Well, I discussed this with my gynecologist and we decided, the ovaries, they're gone."

Really? I'm 50 and done with them. Then I said that it was really ovarian cancer that I fear. Few side effects, no really good way of screening for it and, I joked, I already had Breast Cancer. Better the devil I know, as we say in English... But the breasts, I'll probably go with screenings until I decide when and what to do.

They were a little taken back by my bluntness so I tried to soften it. "If I were younger and hadn't had my children yet, perhaps not... but for a 50 year old woman, I think it's a reasonable decision, since it's much less extensive surgery than the breasts." The psychologist seemed surprised. "Well, if you're really worried..." I'm actually not, I explained. I just didn't see the point in keeping them if I'm BRCA positive. They've done their job and I didn't see the point in walking around with them, if they carry a likely risk of cancer.

Breasts, that would be a decision for later. I'd need to think...

"We actually don't do that here in France". At all? An ablation des seins, she called it, a very harsh term for removing the breasts. I've only heard and used the word mastectomie.

"Well, I'm sure it's done sometimes..." Again, if the woman is really worried. They used that annoying French word "angoisse" which does mean worry, but can imply unjustified worry.

"We do surveillance" the oncologist explained. I was trying to get my head around this. They have all these French women, being surveyed and just waiting until they get cancer?!? Am I missing some point?

"It's a different attitude towards the body, it's cultural..." the psychologist started in. I bit my tongue but I was thinking it's about not informing women of their choices people! I remember how the lumpectomy was not presented as an option. I figure French women with BRCA are being told, oh we'll watch you! How nice... until you get cancer. A good quote I read somewhere was the question a doctor put to a BRCA positive woman "Would you like your mastectomy with, or without, chemo and radiation??"

This was not the moment to get into this discussion, especially since we don't even have the test results back (and won't for many months). Also, these people were not the ones who would be making these decisions anyway with me. Useless to get into a go-nowhere discussion...

So what kind of surveillance would happen? Mammogram, MRI and ultrasound. Um, that's what I'm going to be doing already. Really? Oh no... WHY did I open my big trap.

I blurted out a half-garbled response. Well, Dr. N., been with him a long time. Once a year, no MRI's, my sister, MRI's every six months, Fibrocystic, blah, blah... Then I decided that I just had to come clean. "I've been going to Dr. N. a long time. He has family, who are radiologists, in the U.S. so he's familiar with how things are done back home.

I asked, and he pretty much does what I ask..."

I was hoping that making it sound like I was a Special Case would mean that they wouldn't get the impression that he's going around ordering all that for every IDC case...

But this was different. I explained that I'm on a 6 monthly schedule; mammo + ultrasound and then 6 months later, MRI (I left out the story of the second mammogram just to not confuse things).

No, BRCA positive women in France only go once a year and have to have all three within a window of 2 months. She explained that it was to check on the other tests. She was surprised that my sister isn't getting the other two and just MRI's. Yes, I know about the false positives. She's already had a biopsy once...

I'm still digesting that. Basically, except for the timing, I would be followed the same as I maneuvered with Dr. N.?!?

Then I had to sign a form, consenting to everything. I realize that a positive means I have a higher risk of cancer. All info is confidential. My blood can be used for other research principals. Any doctor I designate can have access to my records. No one in my family will be informed. I realize that I may still be a carrier of something that cannot yet be detected, and so on.

Basically, we winded it up with confirming that no testing can be done on my girls until age 18, by French law. Also, they asked again to have the information on my sister and my cancers sent. I mentioned I'm going home this summer and they asked if it could be emailed earlier.

Later on, I read that women who are more pressed to have this test, drive up to Belgium and pay for it. Results in 3 weeks. That's a 6 hour drive and quite frankly, with my risk factor, I'm fine with this. Also, with a bit of research, turns out that only 5% of BRCA positive women get the bilateral mastectomy.

The geneticist accompanied me to get the blood test. He pointed out their names on the forms and the emails where I could send the additional information.

Then a nurse took me to another room to get the blood test done. I hardly felt it! It was like the easiest blood test I've ever had. She took two vials and put them in a plastic bag, made a copy of the consent form for me to keep and sent me on my way, through the smoke-free front door.

Couldn't have gone better at the surgeon's

Nice morning. Parked at Adassa and walked Davina to her school, since it was close by and the traffic is awful in the morning. Didn't even have to pay for parking since it starts at 9am. Davina starts school at 8:10 and my appointment was at 8:15.

Davina scampers off and I head back to Adassa. Dr. G. greets me with a "Yom Tov" since it's Shavuot and I wish him the same. I sit down in the same seat where he told me I wouldn't need chemo. Then he takes off without explanation. I can hear his voice in the hall. I look around. No diplomas displayed. American doctors usually frame and post them. I never see them in French doctor's waiting rooms. Dr. N. has a bunch of photos of S.E. Asia but Dr. G. seemed to have a lot of African art around, some of which I remembered from his Ob-Gyn office across town, 15 years ago, when I was pregnant for the first time and he was still just a Ob-Gyn. New location and roles, both of us...

I was braced for a confrontation so I took the High Ground. When he finally pops back in, I stand up, hand him Dr. N.'s envelope and say brightly "Good news!"

I didn't need to tell him what it was. He quickly slid everything out and started popping the mammogram images on the light screen. He then ripped into the ultrasound papers like a kid with a new comic book.

I waited but no question came. He didn't ask how or why and he was pleased.

I'm trying to remember how we changed subjects but I explained about the Tamoxifen, and the side effects. I made it very clear that these were not bad enough to justify any anti-depressants. Not even sure if they're really "hot flashes". I kind of get warm and sweat sometimes? So I did this... and put a mini ziplock with the odd looking homeopathic remedies on his desk. "I went to see a Dr. B..."

I thought, he won't like this! So wrong I was. He knows him! Dr. B. has worked with oncology patients for years. His remedies actually work!

Dr. G., a homeopathic sympathizer?

Well, I had to so something... Can't say yet if it works... Thought it couldn't hurt...

Then he asks carefully "But are you still on the Tamoxifen?"

"Um, you told me that I had 100% markers for both hormones. How many cancer patients even have the option of taking a pill to reduce the chances of a reoccurrence?"

He puts his hand over his eyes and leaned back in his chair. "I don't know how many times I repeat those words every week. But they have side effects and want to stop it..." I assured him that stopping wasn't on the table. I don't want this again!

I went over some odd points. Soy products are fine.

So we do the exam. I was a little concerned about the pain under my left arm. Every BC survivor fears the dreaded lymphedema (look it up if you want, not pretty!) which can show up long after the lymph nodes were removed. No, it's not that. I explained about the swimming. He explained that my flesh, frozen by the rads, is coming back to life slowly and the swimming is pulling on it. That's all. Promise.

The lump is still there but it's scar tissue and might take ages to leave.

The exam is much more thorough than usual. He really presses down on it. Doesn't hurt.

He says the scars look good. I think they're ugly but don't tell him! Softening up well but I think they still have a long way to go.

I dress and sit back down at his desk. He's looking at my results one last time and putting them together. I bring up the Dreaded Subject. I explain about the strange periods. Um, wondering if you wanted to...take anything out?

No. Not even with the odd cycles? "That's just the Tamoxifen!" Well, yes, it is but Tamoxifen does carry a slight risk of uterine cancer and BC survivors also have a slightly higher chance of ovarian cancer. I'm 50 and I was convinced that he'd mention removing some stuff. I can't say I'd be against it either.

No. No need to remove anything. No further surgeries needed.

I kind of let it drop because that's really more the call for the gynecologist. Also, I'd need another surgeon anyway, since he just does breasts. I don't think this subject is entirely off the table but no use discussing it further.

"You realized everything worked out really well for you. You know that..."

Yes, I did, I assured him. I told him I'd had some bad news a few days ago. I can't go into details but wanted to know if there was anywhere or anyone who specialized in Triple Negative Breast Cancer (TNBC). No, he said "I hate that one. We all see it." Not comforting! He made it clear he can't talk about another case...

"You realize how lucky you are. Are you..." and the word he used in French was "contente" which is happy/contented/satisfied (as opposed to "heureux" which translates as "happy")

I'm contente. Yes, I know. I don't take it for granted. I'm not sure if he really believes it or not. It doesn't matter. "Don't forget these" he says, handing me my envelope as I leave.

I did not mention the MRI Dr. N. has planned for the fall.

He originally said once a year but the secretary says he wants to see me in 6 months so I book a date for Dec.

Informing myself about BRCA

I got a reminder of my BRCA testing. Of course, it was months ago that they called me in the store. I dropped the cart and ran outside (luckily, it was a small store and they were cool with it).

They said to call if I had to cancel. I decided to call anyway, and just make sure I know what to do. I have to go back to that wonderful cancer center again. It's on the ground floor. I'll take the letter instead of the orders, just to prove I'm supposed to be there (am I scared of their reception or what??)

So my new homework project is to get information about the BRCA gene mutations. They let me join the BRCA sisterhood group on FB. It's quite enlightening. They make it much less scary.

I want to see this "Decoding Annie Parker" movie but am having trouble finding here in France. Might have to wait on it...

This is a good documentary. I'm watching it now. It's kind of long but watch it soon, if interested. Apparently, it's only available for awhile.

http://www.cultureunplugged.com/play/9605/In-the-Family

It's easier for me because I've had my children. Since my sister was negative and I don't have the heavy family history. I also didn't have a type of cancer associated with BRCA. I'll be very surprised if I'm positive but I want to know. I still want to know why it'll take so long to get the results.

But I'm realistic. I'm still Ashkenazi Jewish and have had breast cancer.

Tomorrow, I finally see my surgeon, and happily hand him over the results of my ultrasound and mammogram (which he thinks he's going to order himself). Oh help.