Need To Make fast Decision

RosiePosey · July 2017

My wonderful wife just had a BiLat MX and a sentinel biopsy.

We knew going in she had at least 1 positive node and they took three. One came back with a .4 CM carcinoma and the other two were clear.

She is BRCA1 (hence the BiLat MX) and the original tumor was PR+ ER+ and HER2-.

She had chemo first and the tumor in her breast and lymph responded to the chemo and shrank.

The docs say the studies which show radiation alone is just as effective as going back in and taking all the lymph nodes was done only with patients who had chemo after surgery.

It seems like the safest thing to do is go back in for the other nodes and then have radiation but we are worried that is there is a recurrence this will limit our options for future treatment and she may be risking lymphedema for no good reason.

I know this is her decision to make but I'm trying to help her get more informed opinions since our surgical oncologist and our oncologist are not very firm in their recommendation and seem to disagree.

NotVeryBrave · July 2017

I had no positive nodes at the time of surgery but was told the ALD would only be done if 3 or more of the SNB ones came back positive.

letsgogolf · July 2017

I had a micro deposit in 1 of 8 nodes and had radiation to all the rest with the exception of the intramammary nodes. Which quadrant was the location of her tumor?

ElaineTherese · July 2017

I had ALND done and have not developed lymphadema. But 1) my cancer was aggressive (Grade 3, HER2+), and 2) my surgeon had lost track of the compromised node, which looked clear after chemo.

I would think that radiation would be good enough. I once asked my radiation oncologist about my inability to have radiation again should there be a recurrence. He said, "Well, if it didn't work the first time, maybe it's time to try something different the second time."

Hopeful82014 · July 2017

1) I'm not so sure you need to make an immediate decision - don't drag it out but taking an additional week is not going to make a difference unless you've already stalled on this for a while and it doesn't sound as though that's the case.

2) Was pathology done on the positive node? If so, knowing its characteristics, especially the growth rate, could be helpful in charting your course.

3) Could you obtain a 2nd opinion at a treatment center (preferably NCCN Center of Excellence or similar) that is entirely separate from your current team?

4) Have you spoken with a radiation oncologist?

I don't have any answers, of course, but hope some of the above helps.

7of9 · July 2017

No lymphadema after ALND (I had recurrence - no rads first time, false negative in sentinal biopsy?) Recurrence sucks.

RosiePosey · July 2017

Thank you this does help.

We have an appointment with a radiation oncologist on Thursday.

RosiePosey · July 2017

Thank you.

RosiePosey · July 2017

Thant makes sense so I'll stop thinking about radiation as a future treatment.

RosiePosey · July 2017

If there were three, the decision would be a no brainer. Thank you for sharing.

LibraGirl10 · July 2017

I had all my nodes removed from armpit area. (ALND) My cancer surgeon didn't target specific nodes. She said she goes in and just scoops them all out. Sends it to path afterwards to sort the nodes out from the tissue/fat. I'm all, there were 11 nodes and 7 were positive. Grade 3, poor response to chemo.

I had radiation afterwards and did develop mild lymphedema, but I was also lifting weights, trying to tone my arms.

A trip to PT cleared it up, along with advice to wear a sleeve while working out.

I do boxing now (and never wear a sleeve)and I've had no reccurance.

My understanding is that lymphedema is worse for people that are extremely overweight, but in my expierence, it's manageable.

For me, I'd gladly take the risk of arm swelling over any cancer being left in one of those suckers, but I'm at an extremely high risk of cancer coming back.

It's got to be a personal choice based on what she feels she can live with.

RosiePosey · July 2017

It's good to know it can clear up. My wife is also high risk by having the BRCA1 gene but so far all the docs are saying just do radiation. She is also having her case get presented at Cedar's Tumor Board so we won't make a final decision until we hear what they recommend.

53nancy · August 2017

LibraGirl10, how long did you have to wait for radiation after your lymph node biopsy. I was just told on Wednesday that I have Grade 3 IDC and High Grade Comedo Type DCIS. A small lump, under 2 cm, was removed in mid-July and I just got the results. And they are not all in yet, so I have no idea about ER/PR results. Surgeon says he was able to get the IDC out, and the next step is Sentinel Node Biopsy, which could take up to four weeks. Just wondering if anyone knows what healing time will be like after that. If the Sentinel Nodes are non-cancerous, the surgeon says I still must have radiation, and if it IS cancerous, also Chemo. I don't feel like I am even being given a say in this. Both my appointments in his office were under ten minutes; no time to discuss anything. I hope everyone has a good journey ahead and will be thinking of you.

Need To Make fast Decision

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