Worried about test results and timeline.

Eric9909

Hello everyone,

I previously posted with questions about my mom’s pathology report and asking for general information. After her meeting with her doctors on Monday the 25th it was recommended that she have a mastectomy but ultimately it was her choice between that or a lumpectomy of her left breast. Furthermore they told us they’d be doing a test to see if the cancer was genetic or product of the environment and tests to see if the ILC has spread to her lymph nodes. We were told we’d get the results within two weeks then It’d be time for surgery.

My question is, is this a good timeline? I don’t know if we should try to be getting second opinions or just waiting. I don’t want to be wasting time. For the record my mom was diagnosed with ILC grade 1 and in my first post is a full summary of her pathology report. I’m just so impatient to find out more like what stage it is at and it’s hard not to go to the worst scenarios in your head but I try to be the positive voice and keep reminding everyone that it’s going to be ok especially my mom when she is feeling down and thinking negatively. Any advice is helpful. Thank you.

LivinLife

Hi Eric - I am not aware of your mom's history and previous posts... From what I gather it sounds like you met with the surgeon Monday and surgery could be scheduled within the next few weeks or so after you get more info back. Are you only waiting on the genetic testing results? Honestly this is not an unusual time frame at all. I was diagnosed July 21, had my meeting with the first surgeon the end of that week, a second opinion a couple weeks after that and surgery maybe 2 weeks after that. Since I opted for bilateral mastectomy and they were doing a sentinel lymph node biopsy as part of that there was no need to wait for genetic testing results.

Depending on how your mom's genetic testing results turn out it could influence the surgery (type of) decision so it makes sense to wait, esp. if she might want lumpectomy vs. the recommended mastectomy. Also with Grade 1 - it is lower grade so even less rush. I am not well versed in ILC so others can speak to that though rarely will even a month make a difference.... truly.... If you and your mom would be comfortable getting a second opinion now is the time and even if that makes the wait for surgery extend another week or two, meaning a month from now all should be well. I went with my second opinion as my surgeon so not only waited for the appointment with her though also another 2 weeks until her next surgery opening.

Eric9909

Hi LivinLife,

Yes the genetic results are the main thing we are waiting on. I did gather that grade 1 means it’s slower to spread and it’s good to know that this is a common timeline leading up to surgery. It’s just difficult sometimes not knowing all you want to know and overthinking but your advice and input is greatly appreciated and helps to ease my mind! (:

moth

This sounds like a normal timeline. I've heard oncologists say breast cancer is urgent but not an emergency.

Early stage breast cancer is often completely curable. Grade 1 is a very good sign because it means it's growing relatively slowly. What sort of test are they proposing for the lymph nodes? usually that is done *during* surgery, when sentinel lymph nodes are surgically removed and examined for signs of spread. But they could be recommending a chest & abdomen CT or MRI to have a look at the lympeh nodes through imaging instead. Is that the plan?

What size is the ILC component? That + lymph nodes status will determine stage, and then that will go into the decision making process to determine the type of treatment she will need after.

The genetic tests probably won't change her treatment plans much. Most of us have no identified genetic cause and no family history. (that's one of the breast cancer myths..).

Has she decided on which surgery she's preferring? Have they booked the surgery date yet? I think it would be ok to book it now & then if something odd comes on the tests, it can be changed or moved but might as well book.

LivinLife

That's a good idea on booking the surgery date now moth!....unless, Eric, you think your mom may go with a second opinion.... something to think about though....

MountainMia

Hi Eric. It is a very common timeline! Surgery decisions can change with the genetic information, so scheduling typically isn't done until after that is back. Or if someone is having any reconstruction or combined procedure, multiple surgeons might need to be scheduled, so that can put things off a bit.

Stage is not usually determined until after surgery. But as has been noted and you already know, grade 1 implies slower growth and less aggressive. Take some comfort from that. Because of her HR+ type, there are multiple treatment avenues, and you'll get more information about those soon, too.

Waiting for the treatment plan is very hard. Once that's in place, a lot of this gets easier.

Eric9909

Hey Moth,

That's reassuring to hear! I'm glad that's a relatively normal timeline. When it comes to how they're going to or already checked her lymph nodes I need to ask her more about. The only thing she told me is that they felt under her armpits and didn't feel anything but that didn't mean good news because ILC is hard to detect due to how it grows so she'd have to wait for them to call her back.

The size according to her pathology report is “3mm longest contiguous involved segment".

She's opting for a mastectomy as of now I think since that's what was recommended to her but the surgeon said they could try for lumpectomy if she requested it. She is also scheduled to meet with a plastic surgeon on February 4th to talk about reconstruction and then booking after that. Thank you so much for your advice

Eric9909

Thank you MountainMia! I will continue to take comfort from that until we get more information and as things continue to fall more into place and the game plan becomes clearer.

AliceBastable

That's a tiny cancer with a very low grade, so she's got plenty of time to make her ddecisions on the type of surgery she wants.

"Furthermore they told us they'd be doing a test to see if the cancer was genetic or product of the environment and tests to see ...". Maybe Beesie or one of the other researchers has more information, but I've never heard of a test for environmental causes. Some people have a genetic cause. Most don't. For most of us, it's just random crap that happened.

Eric9909

Hey Alice so I just heard it described as a test to see if it had something to do with genetics so I may very well be wrong in describing it the way I did in my original post. I apologize I don’t want to spread misinformation I’m just not very well informed yet and I’m still learning as I go! But I do appreciate your insight and everyone else’s who’s replied

AliceBastable

Eric9909, we just don't want you worrying about something you don't need to when there's more important things to focus on.