ILC - The Odd One Out?

So sorry to hear of your diagnoses MFalabella. I know that it is a shock, I was just diagnosed on February 23 of this year. I am finding that this journey through recovery is one that patience is definitely a virtue. I wish you all the best as you start your treatments. I am not far behind you. I had my mastectomy on April 11th, and go back on the 27th to have more lymph nodes removed. Then it's on to see the oncologist and begin my chemotherapy. Good luck and keep us posted.

FMalabella, I also saw your post under ILC Warriors. Six rounds of TAC did not prevent a recurrence for me nor others with ILC. As others have posted, anti-hormonals seem the most effective route to go. And, because of the way ILC spreads in threads and sheets, it can be very difficult to completely remove through lumpectomy.

If you want to add to the sadly limited medical knowledge of ILC, you can contact the University of Pittsburgh (http://www.upmc.com/media/NewsReleases/2015/Pages/...) where they are recruiting newly diagnosed ILC patients to see how their tumors respond to anti-hormonals prior to surgery. They are all the way across the country from you, but usually being part of a clinical trial provides for your costs and you would be part of team that specializes in ILC where the rest of us get treated the same as ductal.

The best news is that lobular is slower growing for the most part and you have time to breathe and consider your options. You have come to a great site to start your journey and education and I am so glad you are being proactive with this particular subset of bc. Please do not rush into treatment you might not need. Because lobular is slower growing, it does not always respond to chemo that targets faster multiplying cells. Unfortunately, because of the way it spreads, you might need more surgery than you'd prefer. Compromises become the norm.

You've got this. Wishing you strength and times of peace,

Sue

ILC is the second most common type of BC after ductal so therefore statistically a lot more women could live longer and better lives if there was more targeted and specific treatment for us AND

Please make sure that you request a 3D mammo at the time that you make your appointment.  I had my dx mammo and sono yesterday.  I thought that I would automatically be getting a 3D mammo.  By chance, I asked the technician if this was a 3D machine.  She said, "No".  I insisted on a 3D mammo and was given one.  However, if I did not ask, I would have had a 2D mammo and I would have thought that I was getting a 3D mammo.  The 3D mammo cost me $50 more but it was definitely worth it. 

Good luck.

First mammography (3D) following completion of surgery and radiation. New baseline and all is well. Will follow in October for annual both breast.

Originally I had the 3D mammo, biopsy and then MRI all of which confirmed the ILC. It was the 3D that noted spiculated lesions coming off the "unusual" spot that had been watched and monitored since October 2012. It was not until the 3D that suspicions warranted the biopsy which confirmed the BC. The MRI provided further confirmation. As we all know, finding it early is the key.

My 3D yesterday gave me the picture of the surgical markers and a new baseline. Thank you for your discussions

Hi Lily55....Im so sorry you are going through this. BC is the pits! Worrying a second time around must be really hard. Not sure what your question is about reconstruction. You didn't have it and now you want It? Hang in there. Yes I would probably pay for the U/S too as to not have to wait. You will get reimbursed. Yes it still could be benign! Good luck and keep us posted...

Lily, I am so sorry you are going thru this. I hope it is not a recurrence, but they are not the end. I'm still here three years since my last one. I am also one of those who considers myself a total wimp when it comes to this mess. Warrior I am not.

Please treat that lump as precious! It contains information on whether your er/pr/her2 status has changed and can be used to check which treatment will be effective if it is not benign. I say that because lobular can be so hard to find when it doesn't form lumps. Insist it be tested and consider contacting Foundation One or other testing facility yourself.

As to why you're being denied recon, I have no idea. I thought it had mandatory coverage for years now. 😕

You are in my heart and thoughts.

Sue

Lily...why were you denied reconstruction?

Thank you for your comments, means a lot.......i am not in the USA, I am going to find a private clinic to get fast ultrasound, but as ILC IS SLOW GROWING and I did not have a lump before in 2012, and there was nothing in this area just 11 weeks ago i am hoping its not cancer again. I really cannot cope withany more.....

Lily,
I didn't realize you were in Spain. Have you tapped into the European RATHER project, who focus on ILC?

One of the locations enrolling ILC patients for the POSEIDON clinical trial (which I discussed here) includes Vall d'Hebron University Hospital (VHIO) in Barcelona, Spain.
Clinical Trial contact: Mafalda AM Oliviera, MD
Email: moliveira AT vhio DOT net

Part of the RATHER project Steering Committee includes Dr. Josep Tabernero, MD - Vall d'Hebron Institute of Oncology in Barcelona.
Email: jtabernero AT vhio DOT net

Perhaps it's worth connecting with these people?

Chloesmom, my father died from cancer which was thought to have started somewhere in his stomach. He passed away a month after diagnosis and nothing definitive was ever determined about where the primary site was. It was over 25 years ago and finding the primary cancer didn't seem to be much of a priority. Even so, the fact that they thought it was stomach cancer was enough for Medicare to cover the cost of my genetic testing. There is a form of lobular stomach cancer. It is apparently as hard to find lobular cancer in the stomach as it is in the breast. I fortunately did not have the mutation. I would recommend asking for the testing based on your brother's stomach cancer rather than BRCA.

Good luck to you.

JohnSmith, you have been an awesome researcher and resource for us all! Lily, I can't be of many help here except to say NONE of us is pathetic because of the difficulty in dealing with this horrendous disease. I have some really horrible days over a bad test result or just a stupid commercial on TV sometimes. Then I rally again and get going again. Please hang in there and wait to get all the results in. Look at Sue and realize you can do it!

Ultrasound could not find anything, still waiting on colonoscopy appointment.

Apparently your doctor neds to recommend you for the clinical research studies, but its interesting to know there is somewhere interested in lobular closer than the USA!  Thank you John....