What kind of follow-up? Stage 1A, Grade 2, etc.

Calsacienne

Just wondering because I don't agree with what my doctor says...

I had Stage 1A IDC, ER/PR 100% positive, HER neg, 15%, bifocal tumor, 1.3 & 8mm, lumpectomy, no nodes, clear margins, 33 rads, no chemo. 

I'm fibrocystic, dense breasts and the first tumor was found on the ultrasound, the second on the MRI. My mammo was clear. I'm not convinced they're effective for me at all but they insist...

I just turned 50 and I'm waiting on my BRCA test. My sister was negative so I'd be surprised if mine isn't too.

My surgeon says yearly mammo/ultrasounds, and that's it (no oncologist was involved in my care because I didn't have chemo).

The radiologist didn't say that, but it's not he who decides. The radiologist (the same who found the first tumor) recounted alternating mammo/ultrasound with mammo/MRI's for 3, then 6, then yearly...

I saw him in between because of arthritis on my knee so it wasn't official! 

My GP agrees with me and I set up a gynecologist apt. for before the next surgeon's apt. I hope she agrees with me. 

Help! Anyone else in this situation? How are you being checked??

Doesn't yearly mammo/ultrasounds sound wrong to you??

Blessings2011

Hi, Calsacienne - I'm replying because your dx sounds similar to mine, but you say no oncologist was involved because you didn't have chemo...

I had a BMX for my multi-focal IDC. I didn't need rads or chemo. However, because I was 100% ER+, I was assigned to an Oncologist so she could prescribe the five years of Aromatase Inhibitor medication (in my case, first Arimidex, then Femara). 

In another thread, I think you said that you were prescribed Tamoxifen? (Sorry if I got that wrong...) If so, which doctor is prescribing it?

Mammograms were useless for me, with dense, heavy fibrocystic breasts. Now it's not an issue...

Luckily, I get to see my MO on a regular basis while I am taking the Femara. She does a very thorough physical exam, and would immediately order additional tests if she felt I needed them.

Had I chosen lumpectomy, I would have been monitored through regular MRIs.

wenweb

Hi Calsacienne,  I'm sure it's me, but I am a little confused.  I think you mean alternating diagnostic testing at first after 3 months, then 6 months and then (after year one), yearly ?mammograms, or ultrasound~that's where I think I'm confused, I think 

I had mammograms with US (if needed) every 6 months for the first 3 years and then yearly after that.  This year I went to a new facility (for my second yearly after diagnosis) and they advised that I return in 6 months for an MRI.  They didn't see anything suspicious, it is just what they do, and I have dense breasts.  I'm actually glad to have more follow-up because it means that I don't have to be as vigilant.  I guess that I'm wondering why facilities differ in the same area.  I will ask when I go for the MRI in 2 weeks.  

Welcome to the BC boards!!

Calsacienne

I think there's been a change in this back in the U.S. They seem to be using MRI's more. My radiologist said that if they used MRI's on the general population "I'd be doing biopsies morning to evening every day..." So many false positives but they are going that route for "high risk" cases. One woman who basically is the only female in her family to not get BC was recently switched to MRI's and only MRI's. My sister is considered high risk because of me, her dense breasts and she's a lymphoma survivor (they're at risk because of rads to chest). It's MRI's for her...

To be honest, I didn't write down what he said about how I'd be followed. I was there because of my knee and I figured that I'd get that information eventually. It was 3, 6 and yearly with alternating mammo/ultrasounds, mammos/MRI's. I've had this radiologist for 14 years, he found the cancer, did the wire placements and he knows how things work in the U.S. His brother is a radiologist at the Mayo Clinic. 

I'm going on to Tamoxifen because I'm pre-menopausal but after about 5 years, I'll switch to an AI since that's about the time I would have gone through menopause. It's my surgeon who is supposed to be following me because there is no oncologist involved, since I didn't need chemo. I'm not really thrilled about that. He isn't good with questions. He even turned to me once and told me that I'd drive myself crazy with asking all of this (!!) I didn't want him but he is the only breast surgeon at the hospital where I wanted to have the surgery done and the only way to have my radiologist do my wires. Trust me, if I had needed a MX or anything more involved, I would have headed over to the Breast Clinic here. 

There's a lack of MRI machines here in France. My radiologist said that there are 8 per million here, whereas next door in Germany (for us, about 10 minutes' drive lol!) it's something like 30 per million inhabitants. You have to book 3 months in advance, especially since not all the machines can do breast MRI's. I had to wait 3 weeks to get mine done before surgery, which was scheduled around it. I know people who have traveled to other cities to get other kinds of MRI's done earlier. So I need 3 months' notice and to get this sorted before I can even make an apt., especially since I'm sticking with my own radiologist (so I'll have to schedule one of his slots). 

Please ask about this next time. Just ask simply, what is the protocol these days, for a no chemo case (with boobs) right now. So I think wenweb, that this isn't because you changed facilities. The procedure itself has changed (or simply, the new facility is more up-to-date). I think there's been this change and I can't find it on the internet. 

I'm more than a little miffed that my sister, who has never had BC, is being followed by MRI's and my surgeon says they're not necessary at all. I made an apt. with my gynecologist (who is wonderful) and I'll get her advice. Her secretary said it's possible that she could take over my aftercare and just cut the surgeon out of the picture (pun intended). I also see my rads-onc for my rads follow-up and can ask her opinion too. The GP said in a pinch, she could order the MRI's but we don't want to resort to this. I really don't want to involve the radiologist because that would really be pitting him against the surgeon, since they work together at the same hospital. He's also not supposed to be deciding these things. I'm supposed to go through my GP or surgeon to see him. 

In case anyone is curious, we don't have socialized medicine in France. It's universal coverage and then we have to get private policies to cover the rest (so, for example, my husband gets one that is generous with eye care, since we're all in glasses). The coverage provided by the state is really minimal but it covers all cancer care so I've opted to do it all privately, why I can pick and choose my doctors and hospitals. 

Thought I'd explain that, since I get asked about this a lot. I also lived in England for 6 years and they do have socialized medicine. 

P.S. Is there no fibrocystic/dense breast boards here on this site??

wenweb

Good question about fibrocystic/dense breasts.  If you go into the search section you can check it out.  I looked (at the first page only) and there are lots of conversations about dense breasts, but I didn't see a topic specifically for dense breasts.  Perhaps you can look further back, or start one of your own.

Thanks for explaining how things work in France!!

vbishop

My follow-up?  Blood work every six months and regular self exams along my incisions.  No imaging.  No CT scan, no MRI, no PET.  My oncologist did go ahead and put in an order for a mammogram (for implants - and implantgram?) that I will schedule for September, right before I see him again.  This is for my benefit only because I am worried about recurrence where my largest tumor had a clear, yet close margin near the chest wall....and I can't do self exams UNDER my implant.  Overall, my chance for recurrence is very low and the negative effects of the imaging doesn't buy me anything.  I'm good with that.

Annette47

For what it's worth, I have mammo's on the cancer side every 6 months for 5 years (yearly on the "good" side), plus at least so far have been seeing my RO, my BS, and my MO (who prescribes the tamoxifen) every 6 months.  They tried to space that out so I was seeing someone every 3 months but it got messed up so my BS and MO appointments tend to be close together.    I have an appointment with my RO next week, but not sure how long I keep seeing him as it will have been a year since I finished treatment with him.

No MRI's for me, but then again, I don't have particularly dense breasts, despite being pre-menopausal.

NancyHB

I'm unhappy, to say the least, with the minimal follow-up I receive.  Smallish but aggressive Luminal B tumor on chest wall: high Oncotype meant chemo and rads.  I'm barely ER+ so after lousy side effects I quit Tamoxifen and AIs after 9 months.  I see my RO and MO every six months for a simple breast exam.  No bloodwork. Since first dx mamm was clean I  now back to non-diagnostic yearly.  Never had any scans except a bone scam before tx started, and one last year because I bitched for three months about hip pain.  They tell me I'm high risk bit refuse to test for anything until I have "severe symptoms". Maybe I just need to move on and leave this all behind.