Time From Needle Biopsy to MRI With Invasive Lobular?

Posted by jodyinpetaluma @jodyinpetaluma, Sep 6, 2022

How long can I expect to wait for an MRI after a needle biopsy has confirmed I have Invasive Lobular Carcinoma?
It has been two weeks, and there is a BB size bump.

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They finally found a piece needed for the MRI. It's done, and now I wait to get the results. I let my doctor know right away that I am prepared (as much as I can be) to have them both removed in order to prevent future problems.
Thank you all so much,
and stay strong!
Hugs,
Jody

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@auntieoakley

I agree with @lisakinpa , I would be picking up the phone and just asking (respectfully of course) what my next step is and how I might get that expedited. Sometimes you have to call the insurance company directly. If this clinic cannot get things going due to equipment issues, you can request to be sent elsewhere. This is another thing you could address directly with your insurance; they will have a list of providers.
I understand you have a confirmed diagnosis, do you have an oncologist yet?

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It is no easy task to get Kaiser to send you out of their care. Fortunately the radiology dept. at this clinic finally borrowed the needed piece from another facility. The MRI was just taken yesterday (Thursday), and the doctor is scheduled to see me on Monday. I hope the scan shows it is removable and hasn't spread beyond the breast or breasts. Fingers crossed.

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@ilcpfightee

My MRI was quick, but I waited 7 weeks for surgery. Now I am waiting for my Oncotype before I know the next steps. I was diagnosed on June 8th and my surgery was on August 9th. Waiting is hard but they assured me it was okay. I also have ILC Pleomorphic type level 3.

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I hope you are healing up well.
Did you have a difficult surgery? I have been doing a lot of research and not sure what to expect for time down.
I am expecting, hoping, to have mine both removed. So many of my family have had breast cancer.

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I got sick from the pain meds they gave me but the surgery wasn't too bad. I opted for the lumpectomy as the recurrence between the mastectomy and lumpectomy for me wasn't that significant. If it comes back, I will do the double lumpectomy but for this time I decided to go with the easier procedure and radiation for sure, possibly chemo. The sentinel node biopsy area was more painful than my breast. My breast is sore if anything bounces it, like potholes, and my underarm is healing well, but the first few day's movements felt like electrical shocks. Within 3 days pain was minimal unless I did repeat motions, and I am now three weeks out doing fine, mowing my lawn again. I did get an infection and was on heavy-duty medication for ten days.

In my research I did find that chemo isn't really effective against lobular, it is the standard of care for ductal which they lumped lobular into. I plan to ask my oncologist about that if he recommends chemo to me on the 19th. I am new here so I can't share links but if you add w w w to this, it is a very good article from MD Anderson from this year: mdanderson.org/cancerwise/What-is-invasive-lobular-carcinoma-8-insights-on-lobular-breast-cancer.h00-159539745.html

I am so sorry you are going through this, I know how scary it is. Then having an "uncommon" type as far as research is concerned is even harder as I know the percentage that gets this in relation to breast cancer is low, but it is still thousands of us a year. I am grateful for the centers that are researching this.

How are you holding up?

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Yikes, looks like scheduled for left mastectomy, (doc said it is more extensive than she thought). and the right breast possibly as well (my preference is to remove both).
As far as preparing, I have found that preparing in every way to be slowed down has been the best way to focus on what I have control over.
1. Put up cheery items around the bed. Any cards, favorite pictures, etc.
2. Have several tops that open in the front~button up or zip, since raising your arms will likely be very uncomfortable at first. I created a place where tops can be hung at a lower level than the standard closet dowel. I am also planning on using lots of hooks. Some stores sell the organizer/hooks that go over a door.
3. I have a table next to my bed that is large enough for drinks, books, tissue, lotions, medications, etc. I am using a rolling drink cart temporarily since it easily moves around on wheels.
Does anyone have more tips for home healing after surgery?
Stay strong out there!

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Mine was couple days later scheduled easy and results same day

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@jodyinpetaluma

Yikes, looks like scheduled for left mastectomy, (doc said it is more extensive than she thought). and the right breast possibly as well (my preference is to remove both).
As far as preparing, I have found that preparing in every way to be slowed down has been the best way to focus on what I have control over.
1. Put up cheery items around the bed. Any cards, favorite pictures, etc.
2. Have several tops that open in the front~button up or zip, since raising your arms will likely be very uncomfortable at first. I created a place where tops can be hung at a lower level than the standard closet dowel. I am also planning on using lots of hooks. Some stores sell the organizer/hooks that go over a door.
3. I have a table next to my bed that is large enough for drinks, books, tissue, lotions, medications, etc. I am using a rolling drink cart temporarily since it easily moves around on wheels.
Does anyone have more tips for home healing after surgery?
Stay strong out there!

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I love that you are such a planner! You'll be glad! And you will be surprised how well you do,
I used a U-shaped travel pillow a lot for sleep, since sleeping on my back was not my preference.
Have someone nearby who is not squeamish to help out with drains that you may not be able to comfortably reach. And you can get gowns and robes with front pockets that help a lot.
I had lobular and insisted on a double, and so thankful that I did. Lobular has a higher incidence of occurring on both sides, and a small tumor was found on the other side. Best wishes!

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@tessspike

I love that you are such a planner! You'll be glad! And you will be surprised how well you do,
I used a U-shaped travel pillow a lot for sleep, since sleeping on my back was not my preference.
Have someone nearby who is not squeamish to help out with drains that you may not be able to comfortably reach. And you can get gowns and robes with front pockets that help a lot.
I had lobular and insisted on a double, and so thankful that I did. Lobular has a higher incidence of occurring on both sides, and a small tumor was found on the other side. Best wishes!

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I hope you are healing up okay. The double mastectomy is so scary, but after all, I had it yesterday and I'm walking around, changed clothes, and feel very hopeful.
I am waiting to hear about the nodes and if it has spread.
Did you end up having other treatments? I will be taking a hormone blocker at some point.
Have a great weekend,
Jody

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@jodyinpetaluma

I hope you are healing up okay. The double mastectomy is so scary, but after all, I had it yesterday and I'm walking around, changed clothes, and feel very hopeful.
I am waiting to hear about the nodes and if it has spread.
Did you end up having other treatments? I will be taking a hormone blocker at some point.
Have a great weekend,
Jody

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I'm so happy to have found you ladies - after two weeks from diagnosis for ILC - I meet with surgeon tomorrow. After reading about ILC and my mother's history I want a double mastectomy but it sounds like it's really not recommended - my MRI results came back and looks like nothing in the left breast - right had the 1.6cm area so I'm very anxious. I'm 57 yrs - any tips on best questions to ask at first appt? Thanks so much and again feel lucky to have this group...xooxo

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@semurrey

I'm so happy to have found you ladies - after two weeks from diagnosis for ILC - I meet with surgeon tomorrow. After reading about ILC and my mother's history I want a double mastectomy but it sounds like it's really not recommended - my MRI results came back and looks like nothing in the left breast - right had the 1.6cm area so I'm very anxious. I'm 57 yrs - any tips on best questions to ask at first appt? Thanks so much and again feel lucky to have this group...xooxo

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I had ILC in 2004. My surgeon did a lumpectomy. It was stage 1, no node involvement and thought she had clean margins. Two weeks later, a MRI revealed not clean more cancer. I asked for a bilateral mastectomy. Surgeon said no need, but agreed to the lateral. I was concerned but went along. Had 12 weeks of chemo and recovered. I went through 8 years of fear every time I went for checkups on the remaining breast. My fear materialized in 2012 when a cancer returned in the right breast. It was very small and found on an MRI, which I insisted on getting annually. Previously, I had trans flap reconstruction. Doctor recommended lumpectomy for the new cancer and I said no, I want it gone. I am tired of the fear. We did the mastectomy and I had a different reconstruction. I was annoyed because I could have saved myself many years of grief if I had received the bilateral in 2004. I been cancer free for 10 years from second episode. I am so happy that I pushed for the mastectomies and reconstruction. However this is a very personal decision for each person. Do your research, talk to people, decide based on your own mental and physical needs. Cancer is scary and a harsh journey to endure. My mother died from it, so I wanted to live. Listening to my doctors to get lumpectomies and radiation, I am not sure that my quality of life would be as great as it is now. I am very happy with my
decisions and advocacy to be aggressive with cancer treatments. The girls were not well so they had to go for my peace of mind. Decide what will bring you the most peace.

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