Diagnosed with multi focci local recurrence..what next?

Utopria

Hello - I was diagnosed with a local recurrence after exactly 2 years from original Dx, but this time in 2 or more places. The recurrence happened just under the skin. The first time around I underwent BMX, chemo, rads, and tamoxifan, but it still came back . No one understands why. Every doctor says its a very rare case for an estrogen receptive cancer. One doc even put a number to it (<1%!) but stats, dont mean anything when its YOU on the wrong side of a statistic. The 2 places that showed up in breast MRI and biopsied as positive was at 3 o clock and 9 o clock positions.

This time around, I underwent complete left mastectomy (i.e. removed the implant, and as much skin as possible). The path reported multi-focii (which I knew from the breast MRI and 2 biopsies). It doesnt say how many foccii are there, except that the largest is 1 cm in dia. No KI-67 done either. Is this enough info for the onco to determine next treatment? Or should more tests be ordered? In another thread I read women knowing exactly how many focii they had.

Are there any other women in the same boat, would like to hear from you..

KBeee

I also had a multifocal recurrence after BMX. It sucks to be the outlier in the statistics. I am sorry you are dealing with this.

I had chemo, rads (did not have rads the first time), oophorectomy, and then I started on an AI. I am on Prolia to help maintain bones and to reduce the risk of bone mets.Feel free to PM me anytime.

Utopria

Thanks lBeee for your post. My onco thinks all I need is Letrozole +IBrance and no chemo. Since I had rads the first time, no more rads either. I hope he is right. Really paranoid at this point. I will ask him about Prolia for bone density.

Sounds like bone mets are high risk at this point? Are you scanned more often due to the recurrence? If so, how often?

what is the reason for the oophorectomy? Is it to reduce the hormone production?

Meow13

I did not have a recurrence but was diagnosed multi focal and multi centric. I had 2 1cm tumors close to the skin surface but the pathology following the mx showed with 95% confidence that the tumors were separate 4cm apart. Multi centric becaus they were in separate quadrants. So technically I don't think I had multi focal since the tumors were separate entities.

Utopria

Thanks Meow13 - yes technically even mine is multicentric as defined by being in different quadrants of the breast (3 o'clock and 9'clock)

Wildplaces

Hello Utopia,

You have a tumour that is both oestrogen and progesterone positive .

Tamoxifen acts on the oestrogen receptors.

Progesterone is produced mainly by the ovaries ( a little by adrenal) so I am assuming the rational is stop the progesterone. If you have your path report from your initial cancer you should have some estimate usually in % - how many cancer cells have ER/PR receptors.

Ibrance - received accelerated FDA approval for treatment of advanced breast cancer. Well worth a look.

The EUC have also come to that party in Nov 2016.

Chemotherapy in slow dividing growing hormone positivetumours ( and you should have an idea of how angry this thing is by your stage and the number they gave to the mitotic count in your initial path report ) may not be the answer. But if unsure ask for second opinion.

😊

KBeee

Utopria, I was 45, so removing the ovaries was in place of injections so I could go on Letrozole. I know that they provide other functions, but cancer is rampant in my family, so it was just another part of my body that could try to kill me, as far as I was concerned, and I hated that ovarian cancer has few symptoms. I had a friend die of ovarian cancer about a month before my recurrence, so that likely influenced my decision, but I would not change that decision. It was best for me in my situation, and all of my doctors agreed, but that does not mean it's best for anyone else. Decisions like that have to be individualized.

I do not have any extra screening. That does stress me out. If I have any symptoms though, my MO does order a scan. So far, I just had a bone scan because I had (and still have) rib pain for months. I did get an MRI one year out to check on things (since one of my tumors was under the edge of the pec muscle, where it could not be felt), and I'll probably request one yearly for a few years. Unfortunately, my body makes a lot of scar tissue and new lumps, so in that case MRI comes sooner than a year.

Utopria

Thanks for your responses ladies

KBeee - Yes, I am also 45, and am on the cusp of whether to do the Luprene shot or go for ovary removal. I think, long term it might be better to do the ovary removal but for now I'm done with surgeries! Need a break! No cancer in fam..,thanks for sharing how often you do the scans. Maybe I need to relax a bit.

Wildplaces - My mitotic rate the first time around was 2 (intermediate) and KI-67 was 28% (high). ER+ was 92%, and PR% was 100% (!). Given this, does it make sense to do an oophorectomy? WIll need to check what my doc says.

This time around the KI67 was 6% and mitotic count was a 1. More slow growing, which is probably why Chemo is not the right treatment this time around.

Doc thinks ibrance will do the trick. I had started taking but was asked to stop before surgery. Will get the go ahead after my drains are out (surgery was dec 28th 2016).

KBeee

I have heard good things about Ibrance. How long do they intend to keep you on it? I get no routine PET scans or CT scans. I had an MRI last April, and was scheduled to see BS again this April, so the plan was to do them a year apart. Plans don't always go as planned. I have a new lump, so I have an MRI on Thursday. Hoping it is just scar tissue this time.

Utopria

Kbeee - Good luck with the MRI. Will be thinking about you!

My local MO said he will put me on iBrance for 1-2 years. Yesterday, he said he plans to scan me every 3-4 months. I'm not sure if that's good or bad? What is the rationale of having fewer scans?

BTW - I ended up getting a second opinion in MD Anderson in Houston. I also ended up having my surgery there. This whole recurrence thing has completely freaked me out and I wanted to make sure that no one here in Atlanta screwed up. The truth is, nothing was done wrong. This cancer is just stubborn is all. It actually made me feel better.

I'm going back to Houston next week for my post op. Will keep you posted on how often they plan to scan me.

Wildplaces

Utopia - I am 48 and I have had my ovaries and uterus out.

I too had a low mitotic count and highly ER/PR positive tumour.

I understand your need to be done with surgery - I would quite please if I don't see a medico ever again....

Having said that except for not being able to drive my laparoscopic Hysterectomy/oophorectomy was an overnight hospital stay with three small port scars.

Sounds like you've got this sorted - good work on getting a second opinion

on the ovary bit part - apart from the obvious - conception, the two main problems with them missing are

1. Bone loss

2. Potential for heart disease ( catching up with men's cardiac disease)

Both of those related to oestrogen - so antihormonal treatment does pretty much the same ( except for the Progesterone).

Exercise, vit d/ca supp, regular bone scans, low cholesterol and if no contraindications Aspirin 100 mg daily should deal with.

You can not take aspirin with Ibrance, I believe,but the cardiac risk is cumulative over 5-10 years so plenty of time to get to it.

😊

Wildplaces

ohh one last thing on the ever changing world of scans

PET/Ct will not detect deposits of less then 0.5 cm

Their sensitivity is around 80-90%.

So how often you get scan depends on how aggressive they believe your tumour is, and over what period they expect a response from therapy - now there is bit of creative thinking in this process with most oncologists

Every scan is hard and working out false positives is a mess.

Somewhere around the 6 months mark for new and yearly for establish is the "thought compromise" most medico make.

I believe just as important if not moreis to have a good radiologist - preferably the same one review serial scans - looking for a change in pattern (don't laugh but like complicated crochet that is what scans are) but it's elusive to me ....different name on the report each time.

Utopria

Thanks wildplaces - lots of good info in your post.

I had no idea of the SE of anti hormonal therapy or ovary removal. I guess no treatment comes for free

I also didn't think of the accuracy of the scan if done too frequently. Something to consider when deciding frequency of the scan.

Yes the radiologist is crucial. I got a false positive from PET scan where the radiologist ruled skeletal metastasis on the spine. Fortunately my MO was not convinced and ordered a biopsy. Was negative thankfully. Since Ive shifted care from Atlanta to Houston, Im not sure Ill have one person lookng at my scans from the beginning. I do have all the CDs though.