***ANYONE with Invasive Lobular***

RhondaH · 09-21-2006, 10:42 AM

A coworker of mine sent this. If anyone has any experience w/ lobular that I can share with her, could you please respond? Thank you. Take care and God bless.

Rhonda

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Everyone,
I would like to inform you all of some very dismal news that I recently received. I have been diagnosed with a rare and very invasive and aggressive breast cancer. This unusual type of cancer is most normally known to be a recurring malignancy, and most often indicates that the cancer is present in other areas of the body. I will be having a CAT scan today to determine the exact spread of the tumors. I am currently (and hopefully) at a stage 3 and would then be a candidate for treatment, but await the results of the CAT scan to determine the actual prognosis.

If I AM able to undergo treatment, in the very near future I will be facing a double radical mastectomy and node removal. This surgery will be followed by major doses of chemotherapy and I may also be referred for radiation if my physicians feel that I can tolerate and would benefit from it. I have a very long road to recovery ahead of me, and will be OOO for quite some time. When I do return, expect to see a new bald me as I will soon be scheduling a haircut and donating my long hair to the Locks for Love Program.

As an FYI, due to my history and the American Cancer Society's prediction rating, my personal probability for breast cancer within my lifetime is only 1%. I will be undergoing Genetic Counseling to determine the cause and hopefully a cure for this very unexpected diagnosis. Please heed the statistics that I mentioned, and be aware that this type of cancer does NOT show up on a mammogram screening as white spots that the medical community is searching for. I had a mammogram just a year ago that read "normal". After further investigation and information revealed to me by my new surgeon, I have learned that ALL mammos give a number scale rating. Mine last year was a "2" and should have indicated to my doctor to refer me for a Diagnostic Mammo which includes ultrasound images, the technology needed to diagnose this type of cancer. This malignancy does NOT appear as a lump as we have all been trained to watch for. Due to my previous "normal" results I was not concerned at the time I first noticed the mass, which caused a possible fatal time frame in which the cancer was allowed to grow.

Ladies, have a mammogram and INSIST that you receive your number rating. Men, INSIST that the women in your life do the same. Understand that this can grow rapidly and uncontrollably while never being detected. I hope that you can all learn from my dreadful experience and that I can somehow spread the word of this rare cancer type.

I appreciate all of the support that I have already been offered from those who are already aware of this news, and I apologize to everyone else that I had to communicate this via e-mail. I have been waiting to inform you all as last Saturday was my daughter Melissa's wedding and I did not want my children to learn of this and put a damper on that wonderful day. Since Melissa and her new hubby Derek are both working at Meadows, I feared that they may somehow overhear the news. I am completely focusing on my kids right now, and every decision will be made for what will be best for them. I pray that the doctors allow me to fight this and will be awaiting the meeting with my new Oncologist to make a plan. Alternatively, I may have to accept God's will and spend as much quality time as possible with my family and friends.

Also, for my CPCU affiliates, my goal: I WILL be in Hawaii for my Conferment in 2007! I appreciate all of the thoughts and prayers that have been conveyed to me, it will be a very long journey ahead.

Linda

PS - I will be placing information about this type of Invasive Lobular cancer at the mail station in hopes to spread the word, please take time to read this for ALL of the women in your life. Thank you.

Also, I have lots of chocolate in my froggy candy dish. Chocolate's always good! ; )

Kaye · 09-28-2006, 03:59 PM

Hi Rhonda--I also had a very aggressive type of lobular b.c.--pleomorphic invasive lobular. Do you know the type that your friend had? BTW, I was dx'd in 3/01.

RhondaH · 09-28-2006, 05:11 PM

Thank you for responding. She is ER+ and today they were going back in to take out lymph nodes. Apparently the "tumor" is at least 12 cm and wraps around her right side. She sees the oncologist for the first time 10/6. Still don't know if it got to any of her organs. What exactly was your dx and how have you been (I'd like to share with her if you don't mind...she is the divorced mom of 4 children 6-18yo and is frustrated that she was put off by her general practioner when she said she hasn't felt well for a year. Take care and God bless.

Rhonda

Kimberly Lewis · 09-29-2006, 11:50 AM

Hi Rhonda, sorry about your friend, gosh that is a big one! I was impressed with my 5cm tumor- also a pleomorphic lobular. Yes, they aren't all that common and it has been hard to find info on it. They are I "guess" hard to see on a mammogram but my current oncologist can't understand why mine was missed looking back at my films. I was diagnosed 5/05 with what they thought was DCIS. I had AC and herceptin/tamoxifen. Now switching to Femara after my hyst. I have had a pet/ct scan that was clear and NED so far. Brain MRI this coming Wednesday. With her small children I would contact a lawyer regarding being put off till her tumor was so large. It is a crime to be so ignored!

Sher · 10-13-2006, 02:59 AM

I, too have pleomorphic invasive lobular, at stage IV with mets to brain, liver, sternum and lymph nodes. I am newly diagnosed with lump found and biopsy in Aug 06 with at least a 16cm tumor - sorry can't remember exactly without looking at my reports too much info in my brain right now but I about fell out of bed when the surgeon told me. - it was 80% of my right breast (36D). Just underwent a right mascetomy, then tissue replacement from abdomen to chest with skin grafts from pubic to chest. The more I learn about this type of breast cancer the more it scares me because it's so difficult to find others with the same thing and I don't know what's in store for me in the future. Right now I wish I could just go back to work so I can concentrate on something else. I start treatment in three weeks and do not know yet what is in store for me. I'm trying my best to keep a possitive attitude though sometimes I slide, as we all do I'm sure.

tousled1 · 10-13-2006, 04:57 AM

Although I don't have invasive lobular breast cancer, this site that I came across might be of some help.

http://www.thedoctorsdoctor.com/diseases/lcis.htm