Rants about scans

Geesh...rant is right! This is the perfect place to do it!

rant #1 - I can't believe the "you can't go around biopsing every thickening"...OMG - just when I thought I'd heard it all! Yikes...

rant #2 - See my response to you in the thread where you just posted the 2007 Italian Study. Especially the part about pathologists not knowing when a patient has an ILC history.

rant #3 - That's scary! What do we do to protect ourselves?

I'm sorry about your Mom and Dad.

Nash,



It sounds like you've identified in your rants three helpful approaches to self- advocate for in ILC.



Rant #1: Thickening of the breast tissue, with hx of LDIS and especially ILC: Be persistent: get it biopsied if your doctor confirms it's presence. Talk with your doctor about breast MRI, but be mindful of MRI limitations too, in can miss small findings, and can't specify what it does see among other. Tissue biopsy yields cells for the pathologist. Stay in touch literally with your breast surgeon in these circumstances, and try to choose one who is pro-active on biopsy.



Rant #2 and #3: Imaging studies: a clinical history of ILC ordinarily heightens the awareness of the radiologist to vague alterations, small findings on scans, but your right, only if they know while they read the study, and are engaged to look. Ask for a second reading on all scans: many hospitals will do this to up their pick up rate. Perhaps ILC is a situation where this should be mandatory, but at least you can try by asking. Since ILC has a somewhat higher propensity to go places where IDC doesn't, your oncology-radiology team need to work together to look for early signs of change from prior scans. Tell your team of your wish for this; a gentle or direct nudge in this direction is appropriate if you sense it is being overlooked.



Your gut instinct steered you well when you reminded the tech you had ILC. But just to be sure they "get it", why don't you call tomorrow and speak with the head technician or so and ask her or him to ensure the radiologist is fully aware of your type of breast cancer. Or ask if you may come in and review your scan with the radiologist yourself. Most doctors are happy when patient's look out for themselves, and this way you get to meet the doctor responsible for the interpretation of your scan.



Lastly, why don't you approach your personal monitoring with what is now encouraged in ovarian cancer patients for early symptoms: bleeding irregularities, vague pelvic pain (I think you said this is why you had an ultrasound), abdominal bloating and gas, and early satiety or sense of fullness. In abdominal ILC and ovarian cancer, the locations may be similar and hence the early symptoms similar, imo. If these symptoms are present and you continue to be bothered, seek out a gynecologic oncologist and ask to review your concerns with her or him.



You're right to rant. Hopefully the medical community is looking for ways to improve scans for ILC.

I am aware of one new FDG PET study in Canada that may help an ER+ ILC (and IDC) patient potentially examine the abdomen/body: the investigator has put a compound that binds to the estrogen receptor (ER) in the intravenous glucose mixture with the goal of highlighting active ER disease. What a novel idea! Highlight the receptor itself. This is in clinical trial, yet may prove to change PET's tremendously in the sense of personalized PET medical scans.



All the best to you and all LCIS and ILC women and men as you push for answers and progress is made.



Tender

Dear Matic,



From what I can see, you are going to be ONE GREAT DOCTOR! Your zest for specifics in lobular cancer, both research to bedside, is a training which will never leave you and will make your inquiry into patient care ever so detailed.



I've been meaning to say I'm sorry about your Mom and to congratulate her on obviously what is a wonderful son: gracious, super intelligent, and super caring. So today is my chance.



Now if I could send over some homemade chicken soup to warm you up, it would be a real way of saying thank you for all you do for the ladies and men on this board.



With great respect,

Tender