@louanne2024, that must've been hard to hear that breast cancer returned and that it looks like you will need a third surgery now in the form of a double mastectomy and lymph node removal.
It can be confusing. Your best tactic is to ask questions, and keep asking questions until your doctors can explain things in terms you understand. Sometimes we ask a question, they give an answer, and we leave it at that. Only when leaving the room does one realize that the answer wasn't completely understood. You're not alone in this.
What I find helps is to a) make a list of prepared questions and b) to repeat back in your own words. For example, when the doctor explains the procedure or next steps, I say something like: "Let me repeat what you just told me in my own words...."
This gives the physician a chance to correct anything I misunderstood or to recognize steps they may have left out. Rather than considering myself to be a pest or annoying with my questioning, I figure that I'm giving them a gift - the gift of laymen's terms. They do this every day. We don't. By explaining things back to doctors, they can learn more approachable language.
Louanne, do you have another consult before your surgery where you can ask your questions? If not, can you ask a nurse or post your questions on a patient portal? Are you a Mayo Clinic patient?
My Illinois doctor did not like (a) seeing me at all (b) listening to any feedback from me (his patient) (c) being asked about tests considered standard of care since 2013, which he said I "didn't need" at the outset (Dec., 2021) and (d) staying in the examining room to answer anything. He only saw me two times himself, but, on each occasion, he simply got up and left, rather rudely and abruptly. On the first occasion, he did not want to hear about any of my side effects, including dry skin, dry eyes, teariness, mood swings, excruciating bone and joint pain,insomnia, and vivid, violent nightmares. His response, rather than to discuss options other than Anastrozole, which by then had put me in a wheelchair when my left knee joint blew out, was to say, "Don't take it then" and walk out. When I shared my apprehension(s) about recurrence rates with my surgeon, he went to the phone and called the oncologist and said, "You need to see this patient." I was seen by the doctor himself at that time (Oct. 6, 2022) and it was 3 days after my first post-operative mammogram. My surgeon, listening to my concerns that I had never had an oncotype and did not know what the likelihood of a recurrence was from that measure, suggested that the ki67 could also gauge the aggressiveness of my 95% estrogen positive 11 mm. tumor. I had asked the oncologist to order the ki67 for 17 months. His "minions" (the ones he always pawned me off on) had responded, via the patient portal, time and time again, that "this is not a suitable question for the patient portal. You need to ask the doctor when you meet in person" (which almost never happened.) However, it DID happen after the surgeon's distress call and I showed up and---for once (actually twice) he showed up. I asked about the ki67 and his response was, "I won't order that for you. You'll have to get someone else" and then he got up and walked out----again. At that Oct. 6, 2022 meeting he also disagreed that my semi-crippling was in any way related to taking Anastrozole from Feb. 1, 2022 on (knee blew out on Sept. 15, 2022). As a participant in the MOST study whose damaged left knee was the main reason for allowing me into the over 20 year study (1997-2020), I felt and feel that my knee giving out with what mimicked meniscus tear symptoms was most definitely related to ingesting Anastrozole for that period of time. He told me I was "just old" (age 76) and refused to acknowledge that it might have been a good idea to take into consideration my over 20 years of participation in the MOST study as a woman with a strong family history of bone and joint issues like arthritis and one who had MRIs repeatedly on her damaged left knee and extensive X-raying of knee and hip joints at the University of Iowa Hospitals and Clinics during each and every visit. Did he not know this? Did he not care? No idea. He was completely indifferent to me, my pain, my crippling and---even with me in a wheelchair---dismissive of anything that Anastrozole might have done to my fragile left knee, which is NOT "coming back." I now have to brace my left knee to walk at all and I spent from September of 2022 until March hobbling with a cane and in a wheelchair. (I ended up at a joint pain clinic in Oak Brook, Illinois and had 32 ml of an anti-inflammatory drug injected and 6 ml of Durolane and was given Tramadol for pain.) Even more upsetting was the oncotype score that my Texas oncologist finally got for me in 2023, many months after my lumpectomy. It is 29 where 25 is usually the cut-off above which you have chemo. (My Texas doctor says that, had I been his patient at the outset, I would have 3 bouts of chemo). So, the chemo ship has sailed and I am now attempting to find a test that will help me monitor my condition more closely. I have tried the adjuvant therapy drugs for a full year and I cannot tolerate A.I. pills at all (and should not have been prescribed same) and, on Tamoxifen, I suffered extreme exhaustion that made it impossible to stay up more than 3 hours at a time and non-stop UTIs that were fairly resistant to antibiotic intervention and gave me a fungal infection on top of the UTI. (I also felt an urge to urinate that went on non-stop). So, I did not have chemo because my original oncologist didn't know or care enough to order one that might have guided the planning of my treatment at the outset. (So much for "you don't need one") I can't tolerate the A.I. pills nor Tamoxifen. Being confined to a wheelchair or constantly battling an uncomfortable UTI infection does not seem like a good trade-off for an "iffy" promise to prevent recurrence. I would like to be included in the clinical studies that seek out dormant errant cancer cells and eliminate them. I had 33 radiation treatments that started in May of 2022 and ended in July of 2022, so that is my only hope for protection against a recurrence. I now doctor in Texas (Austin) and at the University of Iowa Hospitals and Clinics in Iowa City (which told me, 3 days before radiation was to start that they would not have radiated me at all because I am a woman in my 70s.) and am in search of the best way to stay on top of any potential recurrence, since I have a 36% chance of one without taking Tamoxifen for 5 years, which would drop to 18% if I did take Tamoxifen for 5 years. At the moment, taking any of the pills seems to be a non-starter, so I'd like to know what other options might exist, in terms of tests to take other than bloodwork.