Mother\'s New Diagnosis

Here is my mother's history: Family history of BC w/ grandmother, 2 cousins, and a sister 5 yrs ago. Mom always gets regular mamm's & sometimes 2X yr. Had mamm Nov. 03. 2 wks after mamm, developed a 'rash', with some stabbing pain, warmness to the touch, and skin thickened 'like leather' & nipple retracted on right breast. Went to Dr. Said it was probably an infection, took antibiotic 2 wks. No response. Refd to a breast clinic. Another mamm & ultrasound. Had biopsy. Report was no cancer. Refd to dermatologist, RX prednisone for 2 wks. Some symptoms went away, but still bothered her. She chose to 'deal with it'. Reports said 'no cancer', so that was her comfort. (p.s.we weren't aware of IBC @ the time. She has not been dx as having IBC). F-up mamm in Apr. 04. All was fine. Aug 10 2004, she detected a lump in same breast. Went to Dr. Mamm & ultrasound 8/13/04, "no dominate mass, distortion or suspicious calcification visualized. Ultra sound does not reveal dominant discreet Hyper-Hypochoic mass." However Dr sent her back to breast surgeon, who on 8/24 did biopsy & removed 1/2 inch lump. Report: Stage I, Grade 2 Invasive Ductal Cancer. Scheduled for partial mastectomy 9/1. On 9/1, surgeon called to cancel, as the comparison of most recent mamm to the one from Jan 04 showed some other changes in calcifications that they needed to ck out. Did a 'core biopsy'. Result, more cancer, 1mm. Very small, but in a different area of the breast that now required a full mastectomy of right breast. Successul surgery 9/8/04. Took section of lymph nodes for testing. Finally, 9/16/04 results of pathology report: Another 3 cm mass in the breast (UNDETECTED BY ALL THESE MAMMS!), 13/14 lymphnodes+; ER+; Her2neu+. Had CT scan 9/21/04. Having Bone scan 9/22/04. Echo next week. Treatment to start after tests. A/C every 2 wks X 4 doses; then Taxol/Herceptin every wk X 12 doses; Then Herceptin weekly X 40 doses while doing radiation; then Arimiadex for 5 years.

WOW. Now that I'm through all that -- She has asked the Onc if she is a different Stage now that they found the 3 cm mass and Cancer was present in lymph nodes. The response, 'It doesn't say in the path report'. She is very happy w/ the Onc so far, who seems genuinely concerned that her cancer was missed on so many tests and has asked to see the films/slides from January biopsy to see how it was missed. All we can do now is to look forward and take 1 day @ a time.
But she is very frustrated currently because she has so many questions. She is getting the impression from reading that Her2neu means that she has a very aggressive cancer and that since it's in her lymph nodes that it has spread throughout her body. No Dr or report has told her that. She just feels that. Despite that physically she feels OK, other than pain from surgery still. We as her family, know that the tests they are running currently is what will give the Onc and her some of the answers she is looking for.
Does anyone have any insight for me? I would like to give her some success stories of women who have had Her2neu+ and positive lymph nodes, and didn't necessarily have 'cancer everywhere' and have fought this disease. I know that you can't tell me EXACTLY what my mom's diagnosis or prognosis is, but just some similar situations would help me out to share with her, to give her some hope.
She won't ask this for herself right now. She is saying she wants to talk to someone, but when people offer, it's not what she wants. The emotions are running quite high right now, which I know is normal. I'm trying to help her the best I know how.
Any advice from anyone?

Beverly,
You may find the "Profiles in Courage" section interesting to read. I myself was diagnosed stage IV from beginning with mets to my hip. I am doing great and within ten months of chemo and continued herceptin, I have no evidence of disease. Good luck with everything and just let your mom know you are always there to listen!! Alicia

Your mom has had a struggle to diagnosed. Try to get educated about her her2 status by going on our HER2 Support Group website and using it as an educational tool and ask more questions abd read. You will get replies from the HER2 group group who have similar prblems and will be able give you help and positive results. Ask more than 1 question. WE ALL TRY TO HELP AS A TEAM.
HUGS TO YOU AND MOM.

Thank you for the responses. I am reading as much as I can about Her2neu, and everything else about breast cancer and treatments, in general. I feel like we should all be given honorary medical degrees with all the research many of us women do to educate ourselves on this disease.

Beverly, here is a condensed version of my journey from poor prognosis to today. My story begins years ago, in 1989 when I found a smallish lump in my left breast. I went into immediate and complete denial, not seeking medical help or advice of any kind. My husband's family had a lot of cancer, and I just didn't want to know, I guess. I convinced myself it was just a fibroid cyst, and we'll never know if it was or not. It did seem to fit the profile, and so for 10 years I went on. But in '99 it started enlarging and changing, and I finally woke up and got myself to a doctor (thanks to my husband). After blood work and lung/liver/bone scans showed no apparent spread, which seemed pretty miraculous, I was scheduled for a biopsy with immediate mastectomy if the biopsy showed cancer. It did; Stage 3, 5 of 5 nodes positive, ER/PR negative, and thanks to my surgeon I was also tested for Her2nue (3+).
I started treatment right away; six months of chemo; Adriamycin/Cytoxin followed by Taxol, and 6 weeks of radiation. I was fine for six months, then began showing symptoms of recurrance. My oncologist was expecting this, and even though scans came back negative, we were sure the cancer was back as I had enlarged nodes in my neck and collarbone, a strange rash over my collarbone(all of this on my left side) and enlarged nodes under my right arm with my right breast also swollen and tender. I also had several small peppercorn sized bumps in the scar area. My surgeon did a biopsy of the neck node and also the rash, and both confirmed the original cancer was back. So I started weekly treatments with Herceptin/Navelbine on January 29, 2001.
After 6 months I was determined to be NED! I continued with Herceptin monotherapy until March of this year when I again started Navelbine in combo with Herceptin, after scans this spring revealed a 2nd recurrence to the same lymph nodes. Latest CT showed nodes normal in size, so in a few more weeks will have additional scans to determine if NED.
Your mom should not fear that because she has disease in the lymph system, it has spread elsewhere. If it has, it CAN be controlled and even beaten back for a good long while.
You didn't say whether one of the scans ordered is a brain MRI, but that is a must. Scary, but necessary.
BIG Hugs to mom from me!
Love, Lolly

I got Dr. Susan Love's Guide to BC and it was very informative. I also bought a more elementary book of Rosie O'Donnells bc which made things less scary. At first I did not want to talk to others so I read inspiring books the first being from Lance Armstrong who had a 5% chance at success of beating his disease and has since won 6 Tour de France and been in remission for atleast five years. Another book is Neil Cavuto who beat leukemia and MS entitled More than Money and it lists a lot of famous people and how they over came Cancer. I also read Evan HAndler from Sex in the City's book called "Life On Fire" he fought AML a deadly for of leukemia and he is alive over 20 years later. These are books that were comforting that I could read at my own pace when I was ready. When it all got to much I just put the books away. Your mother is very blessed to have such a caring daughter like your self. Also what about second opinions? Any good Dr. would never mind a second opinion and it may be extremely valuable especially if you think he or she may have missed something prior.

I did lots of reading last night about Her2. Very enlightening. I'm learning a lot about the treatments she will be having and the Herceptin, etc.
Thank you for the encouraging words. Mom had a much better day yesterday. This is something you never truly understand, until you or a loved one experiences it. My sister-in-law & I have discovered a key to lifting her spirits: have the grandchildren call her or go see her!! (they are 11, 9, 8, & 4) That seems to get her mind off things, while she waits for results from the scans. She has not had a brain scan. I will have her ck w/ the Onc about that. As far as a 2nd opinion, it sounds like it was the breast clinic & their pathology dept that 'missed' the cancer, and even the Oncologist doesn't seem to think it was human error. Mom's breasts are very dense, and it seems that machinery just isn't enough to 'see' anything. Mom also didn't push and insist, as she was trustworthy of the testing.
Lessons learned the hard way, I guess. But we push forward.
Yesterday is History. Tomorrow is a Mystery. Today is a Gift.

Hi Beverly,

I was diagnosed Dec 99 with Stage III, 5.2 cm., ER-, Her2/Neu, 9/21 nodes positive for cancer. I was 44 years old.

I had a mastectomy, 4 rounds of adriamycin/ cytoxin, 4 rounds of taxotere, 25 hits of radiation (would have been 30 with immediate reconstruction which I didn't do) and then, 52 weekly Herceptins. Prophylactic second mastectomy and prophylactic hysterectomy, later.

I had to push to find a dr who would give me Herceptin. My first Onc wanted to "wait" until I recurred to use the Herceptin. That wasn't good enough for me (12 and 9 year old children - male Oncs do NOT get this) - I had done the reading that stated Herceptin was effective for Her2/Neu.

I found an Onc at the Univ of PA who believed in giving women who presented like I did (high probablility of recurrence)Herceptin from the get-go. Had my first Onc had a different philosophy, I could have immediately entered a trial for Herceptin.

In two mos. it will be 5 full years for me, NED.

I wouldn't have found the Onc I did if it hadn't been for a live support group at a local hospital. I think these support groups are invaluable.

By the way, I had had a mammogram 14 mos. before my diagnosis which showed nothing - and 14 mos. later, I had a 5.2 cm tumor. So, I gathered up my films and took them to a malpractice lawyer who had them read by another doctor. The lawyers's doctor could not find any trace of the cancer either. So, that gave me some peace of mind and closure that medical neglect wasn't an issue.

In 10 months (yes, I'm always counting), my oldest will be 18 and I'll exhale from my 5 1/2 year worry (more like agony) that my kids would have to be placed with guardians if I died (my husband had heart failure last year).

Best of luck to you and your mom. She is lucky to have such a concerned daughter.

Hugs,
-Gabrielle