***ANYONE with Invasive Lobular***

[RhondaH]

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]

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]

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]

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]

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]

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

[tousled1]

Another site that your co-worker will want to check is:

www.cancer.gov (http://www.cancer.gov)

Go to breast cancer and it will have information on invasive lobular cancer and treatment for it.

[Sher]

Thank You Kate, I will check that out later. For now I have to take a nap.

[suzan w]

Rhonda, I was dx'd with invasive lobular in May 2005...found in a mammogram (miracle child-surgeon said), a very small tumor 7mm (also miracle for lobular) and node neg. Had prophylactic bilateral mastectomy...A/C, and just finished a yer of Herceptin (every 3 weeks). Arimidex for 5 years. ER+,PR+,Her2+++. I have been given an excellent prognosis by my oncologist. Fingers and toes crossed!!! Best wishes to your friend!

[Kaye]

Rhonda, sorry I didn't get back to you sooner. As I mentioned my dx included pleomorphic invasive lobular. I also had IBC and high grade dcis with extensive comedo necrosis, 9 out of 12 pos. lymph nodes not matted together (although first CT scan report -- CT was done one week after surgery (bilateral mastectomy}--first intervention) said that there appeared to be remaining lymph nodes that were matted together. I was also ER+ and Her2+ I also had enlarged retroperitoneal nodes and an enlarged aorto-caval node. In addition there was a lesion in my liver (not definatively identified) and also had enlarged hilar nodes.
My treatments included: bilateral mastectomy, chemo (4 AC), rads, more chemo (2 Taxol and 2 Taxotere along with year of Herceptin), Arimidex, complete abdominal hysterectomy/oopherectomy. I then started taking Doxycycline and Celebrex, one month after starting Celebrex I increased it from 100 mg/twice/day to 200 mg/twice/day. I then started Zometa at half dose--to be given twice/year. 6 mos later after I had 2nd zometa, 2 months later I doubled Celebrex to 400 mg/twice/day, and began statin drug (Lovastatin). One month later I began having Zometa every 3 mos. at half dose. About a year and a half later I had a year of full dose Zometa and then it was again cut back to half dose.
How have I been doing? Well--it has been an interesting journey. About 2 mos. after I started Arimidex I had 3 unexplained attacks of acute pancreatitis--each 13 days apart. A 2nd opinion dr. thought those had something to do with the enlarged retroperitoneal nodes. My liver lesion increased during this time and there appeared to be a possible 2nd liver lesion. Again, the lesion was never biopsied or confirmed as to what it was. 5 weeks later tumor markers went whacky--CEA was above normal, CA 27-29 had gone up 10 pts (at highest end of normal), Testosterone level doubled and then went up 6 times normal (unless lab error), and became hypothyroid. Started taking thyroid meds--most levels returned to normal.
I then had hysterectomy the week after I stopped Herceptin. 3 weeks later, alkaline phosphatase leveled made highest jump and was at upper end of normal range--a few more pts and it would have been abnormal. This was when I doubled Celebrex and started Doxycycline.
I developed severe lower back pain--was excruciating. That started early on--within about 6 mos. of dx or possibly even before. It improved with Zometa. I also had sudden onset of severe sciatic pain at night. I was found to have a synovial cyst and/or cysts--reports said either mass or cyst. I was also found to have a soft tissue lesion in neck--thought to be metastatic--never tested. I had elevated CTC (circulating tumor cell test) but started probiotic therapy. Severe neck pain began to improve. Coincidental? I also had developed nodule in thyroid--results inconclusive. I was also found to have increased uptake in submandibular gland--was told it was a tumor. I had it removed. Results--contradictory. It was sent for tumor testing--privately--found to test positive for 7 different chemo combinations (Rational Therapeutics). Pathology report said it was benign. Rational Therapeutics informs you in 3 days if they don't have enough malignant cells to test. I was not informed--they had enough malignant cells. Pathology report said they received a "segment of the gland." The surgeon showed my husband the entire gland after it was removed and 'walked' it over to pathology himself as well as gave them the special kit to send to Rational Therapeutics.
At my pre-op appt., when surgeon gave me reports that said gland was benign, I asked him why path. report said they only received a 'segment' of the gland when he had shown husband ENTIRE gland and gave it to pathology himself. The color drained from his face and he was almost speechless. He hemmed and hawed and finally said he "didn't know."
Funny thing, about a month before I had found an article about our health provider--talked about how they manipulated test results--particularly those involving cancer...so who knows.
About a month later I re-did CTC (circulating tumor cell test), results were now "0." 6 mos. earlier results had been a "4." Anything >2 is suppposedly significant. Meanwhile neck pain was now gone.
Other unusual signs--blister-like rash across chest (non-malignant side)--appeared suddenly. Looked like shingles--but no pain. Dr. thought it looked like shingles. It was gone in a week. I had had weird bug-like bits (no itching that were not blister-like). I also had weird spreading rash on non-malignant side about 10 days after surgery--fit description of IBC rash. Surgeon removed small area and although reported results were 'benign', spreading process stopped. I later read that if large enough area not tested, one can get false negative results.
I should also mention that for about 3 to 4 years before dx I had developed swollen legs--no cause ever found but am not sure if 'right' or enough tests had been done. I also was anemic for about 4 or 5 yrs before dx. 9 mos. before dx I found hardened area in chest (within days of last normal mammo) that I had shown my ob-gyn--he flippantly reminded me that mammo of few weeks before had been normal and made me feel stupied for even showing him. Then about 6 mos. later I began having weird bowel symptoms. I was told to tell my regular dr. I did 3 mos. later. He just ordered standard 'sample.' Then after bc dx--just before mastectomy began to have significant rectal bleeding. It continued off and on until after last AC. I did have colonoscopy 4 mos. later that was then normal. Again at time of dx of bc I also had many enlarged retroperitoneal nodes--rept said it was not likely associated with b.c. Was that from the lobular bc or did I have a 2nd cancer? It was never determined. I have strong family hx of cancer--many died young w/breast cancer (youngest died at age 28). (My mom had 4 first cousins died from bc at young ages and her sister was dx'd at age 45). She had 2 aunts who died from bc as well. I was dx'd at same age as mom--50. I had uncle (paternal) dx'd with colon cancer in his 30's. My paternal grandmother died in her 40's from bc and another uncle died from melanoma. Yet, I tested negative for all known genes at time of testing.
I was dx'd 5.5+ yrs ago. My husband, former cancer researcher and 2nd opinion dr's, think I was stage IV at time of dx (although path report indicated stage IIb). As one 2nd opinion dr. mentioned, what was important was not necessarily 'stage' but treatment given. Then again, he indicated he would not necessarily have given me same treatment but didn't disagree w/it but then again would not tell us what he would have used--since treatment had already been started.
So, how am I doing. I am still here. I am working. I have ups and downs and have become hyper-vigilant. I have tried to learn everything I can about b.c. I do additional treatments--off-use of medication based on research. I also try to eat alot of vegetables and exercise. I don't know if the treatment I have received has always been the best but can't argue too much since I am still around despite my initial pathology report which suggested otherwise. There are a few things that still need to be taken care of. Oh---and forgot to mention I have had lymphedema from the very start-woke up with pain in my elbow after surgery. I have no idea why my elbow would have hurt. I have seen an OT and PT's and received treatment since. The lymphedema has progressed despite on-going treatment and custom sleeves. It's a royal pain but do-able.
Please excuse long message but wanted to give friend some encouragement and share what has worked for me. Take care and hope you/she are doing well.