No treatment 1 1/2 months after surgery?!

Eric, just a thought, but when I've had appointments moved, they're usually moved up closer, if there is a problem. You're still very new into this journey, and any phone call can be frightening. I'll follow this thread to see how your mom (and you) are doing.

Carol

Eric, I had ILC, Stage 2 as well with 2 positive nodes. I waited for 6 weeks from surgery to start my first treatment with Lupron and another 6 weeks for letrozole, a total of 12 weeks. I think it would work better for your mom to recover from surgery before she starts medications.

These are my thoughts Yes, you are overreacting. If something bad comes up they don't push the appointment off they move it up to see you sooner-like Sunshine said. Also, different doctors communicate differently so we each only really have our own experience.

Personally if I were the patient I would not handle this situation well because it would be very anxiety-producing for me- I would have had 3/31 as "the date" and would be frustrated to have to wait two more weeks to know the treatment plan. It all depends on how your mom feels though, is she happy with her provider, does she want to get a second opinion or call the office back and ask if it is possible for an appt sooner?

In general, ILC is considered slow-growing. So yay for that. If your mom is offered chemo they can schedule the chemo for the next week. If she needs radiation they can schedule that quickly as well. Typically chemo starts a month after surgery so 4/13 isn't too far outside that. I do completely understand your overreacting, but try not to stress your mom out. Let her lead.

Eric,

Thank you for clarifying that as suggesting that a doctor or staff member is lying to you is quite serious. I am happy to hear that your mom isn’t worried and is comfortable with her medical team. Is she dissatisfied with the way her doctors communicate? That is important as having faith in your tx team will lower your mom’s stress and anxiety.

Eric, are there some things you can do to lessen your anxiety? I think it’s important that you try to stop looking for red flags or problems, as you don’t want to begin to stress your mother out. Again, your devotion is amazing, but don’t borrow trouble!

PS: I have adult children myself and they have been my best supporters. However if they were anxious and catastrophizing things their support would be less helpful (and I have been stage IV for almost 10 years) Again, please don’t think I’m chiding you, just giving you this mother’s perspective. Take care

Eric you are receiving some wonderfu,l sage advice here and I hope you find comfort and understanding in that. These initial days until you have all the information are quite difficult because the instinct is to move as quickly as possible. However, key things have to be determined in order to provide your mother with the standard of care we all expect. The primary thing is that Oncotype test result, which is why the MO didn't discuss any further treatment options yet. As far as timing, Moth had some great detail on when chemo has to start for optimal results. I remember my MO wanted me to begin my anti hormonal 6-8 weeks post surgery. She wanted me to have healing time from the mastectomy before adding treatment into the mix. So when you factor all that in, your timing still is moving along just fine. I know that it doesn't feel that way, I well remember. Please continue to vent here when the anxiety or concern builds for your mothers treatment plan rather than sharing that stress with her. She may be a type of person who handles the stress of this diagnosis better by handing herself off to her doctors care and never questioning. One of my sisters was that way and I have to say it worked very well for her.

Hi Eric, glad your Mom's surgery is over. As previously mentioned, it is not weird to have sort of a lag between surgery and next treatment phase.

Did your Mom sign up for a portal? The PET results should be posted in there, if you so choose to know them before the MO appt. There's a few in here that are good at understanding what these reports say.

Lastly, again, the MO should have the Oncotype back by next appt. Since this test goes out, it is unlikely you will see any results in the portal. Glad she is going in person, as this score will determine the next step.

Best wishes to you.

Eric, are you looking at your mother's MyChart? Has she asked you to or are you just assuming you should see it? You keep saying things that sound like you pressure her to give in to what YOU want her to do. I really hope I'm wrong, but that is how many of your posts come across.

Eric, in the USA, as posted by someone else in another thread, effective Jan 2021 you guys have a law that all your health records have to be available to you online & you can transfer them yourself to any provider.

When a PET scan is done, it is 'read' by a diagnostic radiologist. They write up a report with their impressions and recommendations. If that is finished, you should be able to access it. The MO will of course read it and consider it in planning your next steps but you should be able to read it also, and as I understand your new laws, you can read it as soon as it's available, if you want to (some patients don't)

Thanks, Moth. That was me who posted about the law regarding health records being available immediately after being resulted. You do not need to wait for your Mom's MO to interpret the radiologist's interpretation. To find the result of a PET/CT scan, go to the Imaging section of your Mom's MyChart. The result should be in there in 1-2 days after the scan.

I was just at my MO's yesterday & she ordered a random MRI. She reminded me that she will be on vacation for 2 weeks (Spring Break with kids) and the result will be posted before she gets back. She will call on her return but I will be able to see the result myself before that.

Eric, I encourage you to try to decrease your anxiety about timing of results & treatment. One of the really negative things about our US culture right now is the need for immediacy - needing to get things done or get answers right now. Cancer does not work that way. As someone else mentioned, it took years for your mom's cancer to develop. Her treatment is not emergent or even urgent. It all takes time & one of the most difficult parts of this journey for me anyway is learning and accepting that I will always have this cancer history.

Best of luck,

Jane

Eric,

In terms of how things work normally, banish that word from your vocabulary! Every cancer center, medical practice and individual practitioners have their own way that they run their business. Of course , there may be some commonalities, but there is no one way things happen. I belong to an all inclusive HMO and most of what those with traditional insurance experience as “normal” is totally foreign to me. For instance, many worry about insurance company approvals. I don’t! Whatever my oncologist orders is what’s done.

Thank you for explaining that you mother doesn’t speak English well. This helps us better understand your level of involvement.* Many of us have actually felt empowered or that we have some level of control in an uncontrollable situation when we become active decision makers and active participants in our treatment plans. Have a good weekend and stop perseverating on worse case scenarios or red flags!

*I grew up in a household with my non-English speaking grandmother. My mother was her translator every time she stepped outside of her linguistic community. I understand!

Eric, what is your mom's age? Studies such as TAILORx have provided additional data for certain age groups. Also, there is is a way to refine the Oncotype score by taking into account clinical info such as nodes, the patient's age, etc. Investigating these may be helpful to you and your mom. Personally, I would give some weight to clinical considerations especially with ILC since Oncotype was validated mostly with IDC patients. That said, don't discount the effectiveness of hormonal therapy. It can be very powerful on a hormone-driven cancer. Again, with ILC, knowledgable doctors may recommend an aromatase inhibitor as being a better bet than tamoxifen with ILC.

Ok, TAILORx was for diagnosed at age 50 and under. What is her Oncotype score?