Diagnosed today,76 yrs,ER+/PR-/HER2-,advice greatly appreciated!

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lvla
lvla Member Posts: 24

My mom was just diagnosed today. She is 76 years old. Invasive Lobular Cancer, ER+ (79%, Allred Score 8), PR- (0.15%, Allred Score 2), HER2- (Score 0+). Ki-67 was not tested. Grade 2 (combined histologic grade 7/9). Lymph notes are not known yet but skin and chest wall are involved so it's at least Stage III. Will have bone scan, chest/ab/pelvic CT and breast MRI in a few days. Lab drawn for CA 27-29 today.

06/2019, she started to feel an area of hardness on the left breast. Targeted ultrasound in that area did not report anything - BIRADS 2. Annual mammo/ultrasound in year end 2019 and 2020 reported BIRADS2 and BIRADS1. During this time her left breast still felt kinda weird, but as the ultrasounds did not show anything, we did not think better to get additional exams such as a MRI. My aunt passed away at 64 due to breast cancer. We should have been more alert.

A month ago the Gyn saw some skin redness and texture/shape change in that area. Mammo/ultrasound shows a 1cm lump on inframammary fold, BIRADS 5. Did a biopsy at a surgeon last week. Result came back today confirmed cancer diagnosis. The surgeon arranged us to meet with a medical oncologist right away and we got some helpful information.

Surgeon and MO do not recommend surgery (mastectomy) right now because tumor is attached posteriorly to chest wall and immobile. The MO suggested therapies trying to reduce tumor size and hopefully detach it from the chest before surgery. MO said ILC is often under-estimated on ultrasound and he believed the actual lump size could be larger than 1cm as there is already a few cm of skin involvement.

MO ordered the tests above and discussed a few paths: 1. Chemotherapy. 2. TC chemotherapy which he said is more mild. 3. Hormone therapy - Letrozole + Verzenio. He would use the 3rd approach due to her age and heart conditions (Atherosclerosis, high blood pressure, high cholesterol). But he said the oral hormone drugs could take 3-6 months (if they work) before surgery is possible. And that hormone therapy would be most effective for ER+/PR+, but she has PR-.

The MO we met today explained things clearly and acted quickly to arrange for the additional tests. But he is a hematologist/oncologist treating different cancer types at a local hospital. I felt we should go to a team dedicated to breast cancer at a large NCI cancer hospital. I just started reaching out to MSK, MD Anderson, and Dana Farber today. They told me new patients scheduling takes 2 weeks. We are also 1 hour's drive away from Moffitt cancer center in Tampa. But at this point we are willing to fly (despite the current risky pandemic situation) to a cancer center with the best reputation in breast cancer treatment.

It's a major decision so any advice and suggestions would be greatly appreciated!!

1. Any recommendations for specific doctors (oncologists/surgeons) at the above 3 cancer centers? Which of the 3 would you recommend? Do doctors have different specialties based on breast cancer types? Or some doctors are more experienced in treating elderly patients? The schedulers said they would try to match doctors with the cases but will also take requests for specific doctors.

2. Should we proceed with all the tests (bone scan, CT, etc.) locally and bring the images? Or should we wait and do the tests at the cancer center in 2 weeks? The schedulers said their radiologists will read the images but I'm worried if anything could be missed locally (no confidence since last 2 years' mammo/US did not report anything while the tumor has been there).

3. Any suggestion on additional tests to get? The pathology lab did not test Ki-67 - can this be re-tested? Any recommendations for hormone therapy, targeted drugs or combined therapy that worked well on similar cancer types/situations?

Thank you!!!

Comments

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited December 2021

    Ivla, Special K is very active on this forum and she has great things to say about Tampa General. I'm sure she'd be happy to share dr recommendations. Send her a private message.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2021

    I know a number of the Stage IV gals are treated, or have been treated, at Moffit and have been happy with their treatment. Isn't that an NCI center? That would make more sense to check with their specialists, who probably by default have more elderly patients given the locale, than taking a risky trip to a more remote cancer center. I do believe the cancer hospitals you noted also offer remote second opinions, at least I got one from Dana Farber.

    If you get the scans now and they show distant involvement, that may clear up the potential options and lead to different discussions. Every radiologist reads and interprets scans differently and given how ILC grows differently to IDC, it may just not have been visible on prior mammos, so dont discount your local radiologists!

    Targeted therapies do work to hold and reduce tumors before surgery - I am on a similar drug and it reduced my primary 60% and has held my distant bone mets (but I was also 100% ER+, 100% PR+). Verzinio does have a side effect of pretty significant diarrhea, though, which will need to be managed through immodium, etc. It may also impact the neutrophil count same as Ibrance so will make her somewhat vulnerable to infections and viruses (though not as much as traditional chemo would, which is a total reboot of the system) and cause fatigue, but overall this drug class is highly tolerable for most patients.

    This is definitely a case where there are a lot of things to consider before deciding on treatment, and what the ultimate treatment path is looking to achieve. The scans would help add more information, I wouldn't hesitate to get those done. I also wouldnt hesitate to add Moffit to the mix for a second opinion or to move there for primary treatment. Hopefully some more ILC specific ladies will jump in with some other thoughts.


  • Blinx
    Blinx Member Posts: 280
    edited December 2021

    If you can get the scans done now, do it! I'm impressed that they can all be done in a few days. Some scans take weeks to schedule at my hospital! The reports and images will be sent to your 2nd opinion doc same as your local doc received them. For peace of mind, get the 2nd opinion. It doesn't mean that your mom has to be treated at that center -- your local MO can administer the treatment (I think).

    Just from all of the many, many appointments I've had in the past 6 weeks, I'd be extra exhausted if I had to travel any distance. I know there are great hospitals in Philly, about an hour from me, but I couldn't handle a long commute/parking/walking. My local hospital is an easy 25 min drive. My cancer center is 15 min. That works great for me.

    As for missing things, sadly, dense breasts may mask tumors. And an aggressive tumor may not have been there last year.



  • lvla
    lvla Member Posts: 24
    edited December 2021

    Thank you ladies all so much for the information, suggestions and advice.

    I called Moffitt and got an 1/18 appointment with Dr. Extermann. Per Moffitt website, she is in both senior adult oncology program and breast oncology program and treats different cancer types for elderly patients. The breast clinic scheduler said Moffitt sends direct patients >75 (or 70?) to the senior adult oncology specialists and younger patients to the breast clinic. Seems to make sense as my mom is 76+ with coronary heart disease and a bunch of other medical issues. The tumor is too deep for surgery right now and the local oncologist doesn't think she can tolerate chemo or radiation therapy. The additional test results should hopefully be back in the next couple of weeks before the appointment time.

    Anyone had an experience with Dr. Extermann? I did a keyword search in the forum but did not find any. I will also message SpecialK about her Moffitt experience.

    I also contacted MD Anderson, MSK and Dana Farber. No virtual consultation for out-of-states patients. MSK scheduler said they are not offering written 2nd opinion currently. Dana Farber can provide remote 2nd opinion. So I will try to pursue this hopefully as a 3rd option.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2021

    SpecialK, without a space between "Special" and K.



  • lvla
    lvla Member Posts: 24
    edited December 2021

    Thank you ladies all so much for the information, suggestions and advice.

    I called Moffitt and got an 1/18 appointment with Dr. Extermann. Per Moffitt website, she is in both senior adult oncology program and breast oncology program and treats different cancer types for elderly patients. The breast clinic scheduler said Moffitt sends direct patients >75 (or 70?) to the senior adult oncology specialists and younger patients to the breast clinic. Seems to make sense as my mom is 76+ with coronary heart disease and a bunch of other medical issues. The tumor is too deep for surgery right now and the local oncologist doesn't think she can tolerate chemo or radiation therapy. The additional test results should hopefully be back in the next couple of weeks before the appointment time.

    Anyone had an experience with Dr. Extermann? I did a keyword search in the forum but did not find any. I will also message SpecialK about her Moffitt experience.

    I also contacted MD Anderson, MSK and Dana Farber. No virtual consultation for out-of-states patients. MSK scheduler said they are not offering written 2nd opinion currently. Dana Farber can provide remote 2nd opinion. So I will try to pursue this hopefully as the 3rd option.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2021

    ivla - hi, here I am! I read your post and decided to reach out to a friend here in Tampa who has been treated for ILC at Moffitt and find out who her oncologist is. I will PM you that info. She loves this doc, and she did a lot of research and is an informed patient - she would not settle for a run of the mill doc. In looking on my own I also checked the publications the various staff physicians have been part of at Moffitt and there is another oncologist who seems to specialize in treating breast cancer in older adults. I will also PM that info to you. Moffitt is indeed an NCI center, the only stand-alone one in Florida - any others are branches of other facilities. There is a Mayo branch in Jacksonville, and UF Orlando Health used to be a branch of MDA, and many of the physicians are still at that location. Honestly, I am not sure I would venture to Dana Farber, MDA, or MSK for consults - unless you can do them virtually. That would be a lot to undertake and I am not sure you would get any answers you can't get locally. As far as the epicenter of study of ILC, that actually seems to be the University of Pittsburgh. Here is some info on that.

    https://hillmanresearch.upmc.edu/research/centers/womens-cancer-research/meeting-archive/ilcsymposium-info/

    http://ilcsymposium.com/

    There are a number of ILC posts on this website from people with great sources of info and insight, here is a link to all of them in one place:

    https://community.breastcancer.org/forum/71

    If you are on Facebook here is an ILC group:

    https://www.facebook.com/groups/Lobular

  • lvla
    lvla Member Posts: 24
    edited December 2021

    Hi, SpecialK. I really appreciate all the valuable information. I just updated a post above - we got an 1/18 appointment with Dr. Martine Extermann at Moffitt. On Moffitt website she has a long list of publications on cancer care for senior patients. So I hope that would be a good start for us. The two biggest health systems here in Orlando are Orlando Health and AdventHealth. Orlando Health cancer institute used to have the MDA brand until 2013. Her last mammo/ultrasound was done at Orlando Health but schedules there are moving slow. After I managed to get a sooner biopsy date for her with AdventHealth, the doctors we saw and the additional tests were all done at AdventHealth. I will look into the ILC information you shared. Thank you!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2021

    ivla - I just PM'ed you and Dr. Extermann is the doc I referenced above - yay! My mastectomy was at Advent Health here in Tampa and my imaging has been done there as well - no complaints! The branch of Advent Health where I had surgery is actually across the street from Moffitt - they are very used to receiving imaging disks from them and interacting with that system.

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