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Topic: No treatment 1 1/2 months after surgery?!

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Mar 25, 2021 07:26PM

Eric9909 wrote:

I’m here once again to ask if I’m overreacting or if I have a reason to be worried. I posted awhile ago concerned because my mom had her surgery on 3/1 and was told to wait till 3/31 for Oncotype results and would be a phone appointment. A few members reassured me it was okay so we waited.

Yesterday 3/24 she had a PET/CT scan since she had node involvement. Today 3/25 we got a call from her MO’s office saying 3/31 phone appointment cancelled, new appointment for 4/13 in person. We asked why & nurse secretary said MO would not be in the office....I asked if this had anything to do with PET/CT results she said no... can she be lying? Or the MO? This seem so off to me. To me this feels like they saw something in PET and now need time to move to a different course of action. Nonetheless we asked for them to call back as soon as PET results were available.

Say PET is fine, is it weird to be waiting 43 days between surgery and choosing the next course of action? It’s not even to start chemo but to see IF we do it. No hormone blockers either, nothing. This is all just red flag after red flag for me. Let me know and thank you for listening.

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 25, 2021 08:02PM Sunshine99 wrote:

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

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Mar 25, 2021 08:30PM exbrnxgrl wrote:

Eric,

Please forgive me if I don’t handle you with kid gloves. You are reading the tea leaves, my friend and that is a very poor basis for reaching conclusions. So yes, I am going to say that you’re overreacting, especially trying to interpret why the visit has been postponed. I understand that you, and everyone, wants things to move quickly but the reality is that breast cancer is not usually an emergency. It is very unlikely that anything will change, with respect to your mother’s condition, in a few weeks, really.

Of greater concern is the fact that you clearly don’t trust your moms doctor and staff, if you believe they would lie to you. That’s a pretty serious accusation and if you have so little faith in them then maybe switching doctors is in order. How does your mother feel about this? She will have an ongoing relationship with her mo so if you believe that this doctor would lie then find another mo. Your mom will have much less anxiety over treatments and the road forward if she trusts her doctor.

Lastly, even if there were mets discovered on her scans it would take far less than 3 weeks to formulate a treatment plan. Eric, it is clear that you love your mom and I am truly touched by your devotion but I simply don’t see any red flags in any of the info you posted. The word cancer does create anxiety and we wish that everything that needs to be done happens quickly, but again, most bc is not an emergency and we shouldn’t rationally expect our care providers to treat it as such (even if that’s what we really wish). Take good care of yourself.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Mar 25, 2021 08:46PM LillyIsHere wrote:

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.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Mar 25, 2021 09:23PM Beesie wrote:

Eric, as Sunshine said, from what I've seen in my years on this board, when the news is bad, usually appointments get moved up sooner, not pushed back.


Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Mar 25, 2021 09:33PM 2019whatayear wrote:

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.


5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Mar 25, 2021 09:50PM Harley07 wrote:

Eric - the waiting and not having details is the hardest part of a BC (or any serious illness) diagnosis. I understand your frustration, but agree with Sunshine that if the situation was urgent, the appointment likely would have been moved up.

I had an appointment with my MO earlier this month which her office rescheduled 3x. I finally got fed up and cancelled the appointment. The MO is now out of the office for 2 weeks, so I have a tele-health visit next month. It is spring break time in my area, so it’s possible the health care providers took time off after a very rough year to spend time with their families.

Exbrnxgrl’s comment about trusting your Mom’s healthcare team is valid, important and ultimately your Mom’s decision. All that said, I do think much of today’s healthcare lacks any semblance of communication, customer service and concern for the patient. IIRC you have family members in the healthcare field. My last comment is a general statement and not meant to offend anyone.

Surgery 11/5/2020 Lumpectomy: Right Dx 11/10/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/19/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/7/2021 Hormonal Therapy 2/8/2021 Arimidex (anastrozole)
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Mar 25, 2021 10:18PM - edited Mar 25, 2021 10:23PM by Eric9909

Thank you everyone for your replies they always help my nervous-wreck self and help me analyze things better. I try not to go to the worst case scenario all the time but it's just hard when you're hit so out of left field with something new right after I'm already stressing about the PET & results.

Just to clarify some things first mentioned in exbrnxgrl's reply, I think I used poor wording when I mentioned if I'd be possible they'd lie. What I meant was sort of hold the truth back. What I thought after my mom's call with them was "oh they must want to push the appt. back because the MO doesn't want to break the bad news about the PET results on the phone she wants to tell us in person." That's why I was so worried and that was my mindset behind it. My mom wasn't worried and she trusts her team I'm the one that is reading too much into things, but I will say I just wish they explained things to us more. Everyone here tells me this wait and appt. changes is nothing to worry about and I wish the docs or team were the ones doing that. I worry because they don't tell us this wait is normal or reassure us and it’s hard to get in contact with the MO directly. When we’ve tried to ask questions through patient portal one of her staff replies and tells us our questions will be answered in the next appointment

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 25, 2021 10:41PM MinusTwo wrote:

Eric - I agree with ExBrn's comment about trusting your doc. Even if you remove the word "lie", clearly you don't have any confidence in them. So the valid question is - does your MOM trust them? She is the one who needs to be making the decision. If she does, you'll need to bite your tongue. If she does not, now is the time to find another doc before she gets started on treatment. Or at least go get a second opinion.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Mar 25, 2021 10:47PM exbrnxgrl wrote:

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

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Mar 25, 2021 11:04PM Eric9909 wrote:

MinusTwo- I guess you're right in that I question the process and in turn question their ability. I don't want to seem like I'm ungrateful or like I know how things should work, because I don't. I'm very ignorant on things and that's why I'm so grateful for everyone in this forum that enlightens me.

I guess it stems from me seeing other's posts about their care and comparing it to my mom's situation. One example is during our first meeting with her MO, it lasted less than 5 minutes and all we got out of it was that they were doing Oncotype and to wait till 3/31. We didn't discuss a course of action, no mention of chemo, no mention of radiation, or hormone therapy, no "roadmap". We were expecting a roadmap so of course I was a bit let down. Another is how I see people on boards say they email or contact their MO about results, and like I mentioned we can't do that because her staff just says wait till appointment. I understand all of my concerns don't matter as long as she gets treatment and ends up with NED I just wish we were more well-informed.

My mom is content with her team, she was raised more so to follow what doctors say and don't question things too much. That's why it's been mainly left up to me to research and find things and the process of how cancer treatment works, then I mention it to her. She doesn’t like doing too much of the research on her own and I don’t push things onto her I just mention things I find that are insightful and helpful in knowing.

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 25, 2021 11:18PM - edited Mar 25, 2021 11:18PM by Eric9909

exbrnxgrl- I absolutely don't take it as you chiding me! (: And even if you were I'd be appreciative. I'm here to learn and I want to present myself the very best I can so I'm open to everyone's input. Mom's happy with her teams communication for the most part. She does agree with me that sometimes they don't get back to us about questions we have which irks us but other than that she doesn't complain and says they know what they're doing.

I do think I shouldn't let myself get so consumed in research and overthinking and that'd lessen my stress. I do try to never let her see me stressed or freaked out (or try not to at least) because I know if it's stressful for me I can't imagine what she's feeling and I don't want to be another cause of worry. I again thank you!

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 25, 2021 11:31PM moth wrote:

There's research on optimal chemo timing

"Overall, the authors found no evidence of adverse effects when patients started chemotherapy between 31-60 or 61-90 days after their surgery as compared to patients who started their chemotherapy in 30 days. However, for patients who started their chemotherapy 91+ days after their surgery the results weren't so good. These patients experienced worse overall survival (hazard ratio [HR], 1.34; 95% CI, 1.15-1.57) and worse breast cancer–specific survival (HR, 1.27; 95% CI, 1.05-1.53)"

This is from a blog post by an oncology surgeon. The reference is in the post. https://sciencebasedmedicine.org/you-have-breast-c...


I hope that helps you decide when and how hard to push


I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Mar 25, 2021 11:49PM Eric9909 wrote:

Always so informative, thank you moth! I’ll be sure to read more into that too

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 26, 2021 02:26AM AliceBastable wrote:

Eric, until the Oncotype score results are back, the oncologist can't plan any treatment. EVERYTHING depends on that number right now, whether she'll get chemo, how aggressive the treatment should be, if chemo should be done before radiation, how long a course of chemo and how long a course of radiation - there ARE no answers the oncologist can give you yet. Sure, they could do a flow chart of "if this, then that" for every possible scenario, but has your mother said she wants that? Some people do, some think that type of projected speculation is a pain in the ass. If your Mom isn't upset over waiting, you kind of need to take a seat, and SEVERAL deep breaths.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Mar 26, 2021 05:32AM Rah2464 wrote:

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.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 26, 2021 08:48AM - edited Mar 26, 2021 08:51AM by flashlight

Hi Eric, My Oncotype test result was not in when I first met with my MO. It was a completely a waste of time to see him. I kept calling the office for the report and it took over 4-weeks to receive it. Your Mom's results might not be in yet. My new MO just reduced her office time and I only learned this by changing my appointment. They are so busy and they are only as good as their staff. When you are newly diagnosed it is so overwhelming you kind of go with the flow. Once your Mom gets her treatment plan she might surprise you by asking more questions. In the meantime try to go for a run, cycle, or get some exercise to take your mind off her diagnosis. I know you are important to her and she does not want you to worry. Take care.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast Surgery Lumpectomy: Left
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Mar 26, 2021 10:24AM - edited Mar 26, 2021 10:25AM by ctmbsikia

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.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Mar 26, 2021 12:27PM Eric9909 wrote:

Update: Good morning everyone, thank you for your wonderful replies. In regards to the oncotype we got confirmation today that they are still working on that.

PET/CT results I was told that MO wouldn’t be in office available to review them until 4/5 that’s why my mom’s appointment got pushed till 4/13. That’s the norm right? That even if the results are good someone has to review them first? I was told by the medical assistant she’d try to get another oncologist to review them and then ask if she could give us results over the phone which I hope they can because that’s mainly what has me waiting anxiously. They were able to move her up to 4/5 for a phone consultation though so I’m happy with that.

Lastly, I did mention the MyChart thing and asked if they could just be posted there and they again said they had to be reviewed first then they could be. I’m not sure that they will be though because thus far we only receive mychart documents/scans/results till after we meet with the doctors and go over them in person.

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 26, 2021 12:34PM AliceBastable wrote:

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.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Mar 26, 2021 12:44PM Eric9909 wrote:

Alice- Sorry that’s how my posts come across but I can assure you I am not pressuring her into anything she wouldn’t want to or anything that would upset her. Yes me and my sister have access to her mychart that’s because my mother is not a tech-savvy person and she asked our help when making/managing her account. On top of that she doesn’t speak English and seeing as all the results are in English she has us translate and explain things to her. I apologize if I’ve worded things and made it seem like I’m overstepping my boundaries but I’m only doing so at the request of my mom I hope you understand.

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 26, 2021 01:03PM moth wrote:

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)


I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Mar 26, 2021 01:11PM 2019whatayear wrote:

Yes very normal the MO reviews the results before they are released. I hope that your mom gets some nice simple everything is fine results. If there is anything questionable then there are more tests (ugh) I hope you have a good day and weekend.

I have a story of parental medical care maybe you can relate to? I share a BRCA2 mutation with my dad and a few weeks ago I got a text from my mom that my dad had abdm/pelvic CT scan and the doc wanted him to come in because it found an area of concern. Imagine the worry spiral I had; in 2 seconds I was in a panic that my dad had pancreatic cancer.

After much back and forth with my mom, turns out the concern was his enlarged prostate. Which is better than pancreatic cancer. Also why not say the CT scan showed an enlarged prostate and an 11.5PSA. Anyway then a few weeks ago they did a biopsy and at the biopsy they made a 2-week follow-up appointment to discuss the results. So that appointment is this coming Tuesday. Have I been annoyed that they didn't call my dad with the results a couple of days after the biopsy? YES. Is he annoyed NO.

Parents just don't understand! :-)

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Mar 26, 2021 01:19PM jhl wrote:

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

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
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Mar 26, 2021 02:35PM AliceBastable wrote:

Eric, I didn't realize that your mother doesn't speak English. You might want to put that in the top line above her diagnostic information so everyone knows it and can take it into account when replying to your posts.

Some people don't like getting their results on MyChart before they see their doctor. I'm one who does, and I use it to make a list of questions for the appointment.

Please tell your Mom we're all thinking of her.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Mar 26, 2021 02:48PM exbrnxgrl wrote:

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!

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Apr 5, 2021 05:46PM Eric9909 wrote:

Hello everyone thank you once again for your replies! I have been waiting on today to update since today my mom got oncotype results.

PET/CT came back good with exception of something lighting up in her uterus but the radiologist reassured us it was nothing to worry about so I really was paranoid all for nothing! Today she had a phone consult with the MO and she told my mom that her oncotype came back and showed a 10% risk of reoccurrence and to them that wasn’t significant so she wasn’t recommending chemotherapy.

I know that every case is different but should I encourage my mom to get a second opinion? She seems content with just going with that and not doing chemo but I still worry as I’ve seen so many people mention how sneaky ILC is and how it’s better to err on the side of caution. The fact that she had 2 positive nodes is something I think is worrisome too. Maybe I’m just being paranoid yet again and I know I shouldn’t push my mom to ask for chemo if she’s happy with what her MO recommended but would you try to seek a second opinion if you were in our situation?

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Apr 5, 2021 06:00PM - edited Apr 5, 2021 06:07PM by ShetlandPony

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.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Apr 5, 2021 06:05PM Eric9909 wrote:

Shetlandpony- shes 50 years old turns 51 this month.

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Apr 5, 2021 06:09PM ShetlandPony wrote:

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

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Apr 5, 2021 06:11PM Eric9909 wrote:

Her oncotype score was 5 with 10% chance of distant reoccurrence at 10 years

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left

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