Scared of LE, your thoughts?

abitmuch,

Way too many rocks and hard places.  I would see a second surgeon ASAP.  There is evidence that the presence of micrometastases doesn't make a significant difference in terms of prognosis.  What you are describing would have been the obvious standard of care 3 years ago, I'm not so sure that it is now.  I also don't know that ultrasound is the most sensitive tool for picking up positive nodes.  

Here are some questions to consider:

- Have you had an MRI?  To my knowledge they are not contraindicated when pregnant.

- How would the finding of micromets change your treatment if you're not sure you would undergo chemo during pregnancy?  I get it, they would change the plan if you knew you would do chemo, but it seems if you would consider declining it then that's a decision you need to research before you subject your body to what is a pretty horrible surgery for some people.

- Given the grade of your tumor and its specific characteristics, and being 18 weeks away from delivering a 32 week baby, 24 weeks away from a term baby, what does an oncologist think about delaying chemo if you do have positive nodes?  

It's a totally different cancer, but I have a good friend who was diagnosed with Hodgkins lymphoma very early in pregnancy.  She waited until safe to deliver to start treatment.  Obviously that can't be transferred directly to your case, but what made it possible for her should be:  she had an oncologist and an OB/Gyn who were very, very involved paying a lot of attention to her and talking with each other.

My thoughts are with you and your baby.  

------------------------------------------------

Edited to add:  I didn't see the bit about the tumour board and that they have been two separate ones.  So you've kind of had your second opinion already, and the oncs and the surgeons are talking.  For what it's worth, I'd still want numbers and probabilities from them, and probably more info about chemo.  You really need to know what particular findings would change your treatment plan, what the chance is of those findings, and what you would be offered as treatment.

abitmuch, I thought of one other thing.  I would want this info directly from the onc's mouth, as Kira suggested, not just a surgeon's representation of what a "tumor board" said.  You deserve as much information as you need, and surgeons are surgeons, they're not medical oncologists.  

Abitmuch, I completely respect your decision. You're obviously thinking this through and doing everything to protect yourself and your child.

But, I just want to add that previous to surgery ALL my scans indicated no nodes were involved. In addition to an MRI, ultrasound and diagnostic mammogram, I had an another ultrasound and mammogram immediately before surgery to insert the metal. Even then the RO (head of the NCI rated radiology department where I got treatment) came out and told my husband don't worry there appears to be no affected nodes. To our horrible surprise 2 had micromets. They just cannot know until the sentinal node(s) are tested.

Abitmuch, yes you have time. But speaking as one in the 12%, it can definitely happen! Best wishes sweetie!

Abitmuch, I think that taking your time makes so much sense.

Ironically, Yorkiemom and Isthisforreal, the Giuliano study would fit both of your criteria, Tumor <5 cm and 1-2 positive nodes, and he found no survival benefit from ALND in that situation.

I personally responded like it was a red alarm crisis and decisions needed to be made yesterday, and in reality, they could wait, and likely I should have proceeded more slowly---my daughter was getting married in 3 weeks and that drove my haste...

I think this is such a unique situation, and deserves careful consideration in how to proceed.

I've dealt with surgical oncologists, and personally, I find they're still surgeons. I knew one who stopped doing the chemo on his breast cancer patients, but still did it on his gyn oncology patients. I think a medical oncologist (who doesn't wield a knife) needs to weigh in. Just my opinion. When all you have is a hammer, everything looks like a nail...There's a surgical personality and an internal medicine personality, and they are different. That's why you seek information from all members of the team.

Malcolm Gladwell does a great job of describing decision making: too much information will degrade the decision, you need to gather enough to fully inform you but not so much that you're overwhelmed.

These decisions are vitally important, so you need to feel fully informed when you make them.

Beesie, posting at the same time. Great info

yorkiemom, as kira (thank you! ) said, abitmuch finds herself in a very unique situation. Normally an SNB would have been done with the mastectomy, and going into surgery with an 88% chance that the SNB would have been clear, in all likelihood none of this would be an issue now. I had a microinvasion and I had the SNB; the first surgeon I talked to was only able to do an ALND (this was 7 years ago when SNBs were less common) and that was one of the factors that drove me to change surgeons. I had no problem having the SNB with my MX, and I'm certainly glad to have the results showing that my nodes are clear, but I think that if my only option had been an ALND, I might have passed on it.  It's a risk vs. benefit calculation. 

I do agree with kira that it's important that abitmuch get the perspective of an oncologist.  With the surgery done, I would expect that this is the next step. She did mention that she's looking for the referral for that.  If it turns out that her oncologist has a very different perspective on this, abitmuch has the opportunity to change her mind. But for now, I think she's made a reasonable decision with the information she has. I'm pretty sure it's the same decision I would make in her shoes. 

Purple, it wasn't a doctor who told her that--it was a LE therapist. She is probably referring to the fact that it's more likely (statistically) that she WON'T get LE than that she will, and that because she and the therapist are on top of this any LE that developed would be very early and therefore very much more manageable than some of the rest of us have experienced by having diagnosis and treatment delayed. Both of which are reasonable assurances to offer.

If a doctor had said it, though, we'd all be suspicious, wouldn't we?!

Be well,
Binney

If a doctor had said it, though, we'd all be suspicious, wouldn't we?!

You got me there, Binney!  I had missed that it was the LEist.