Recurrance to other breast while on Herceptin

[RhondaH]

NOW, in addition to my "liver enzyme" worries, I just got a call from the Betty Ford Breast Cancer center where I had my 1st follow up last Mon and they just got a copy of my original films from my primary care doctor and they say the affected breast looks fine, but they want me to come in tomorrow so that they can magnify the unaffected breast. I was dx by excisional biopsy 2/1/05, Stage 1, Grade 3, ER/PR-, Her2+, no nodes, partial mastectomy 2/7/05, finished 6 rounds of dose dense TEC 5/18/05, 33 rads 8/1/05 and began 1 year of Herceptin 8/18/05. Has anyone else had this happen and WHILE on Herceptin. I was in control before, but since last Thurs, I am beginning to lose it. Thank you.

Rhonda Hoffman

[tammymarie1971]

Hi Rhonda, I don't have anything wise & wonderful to say except hang in there!!!!!!!!! Things will work out, They may just be being extra cautious with your "unaffected" breast....relax...you are going to have these things POP up like this and you need to decide if you're going to give this beast that much power over your daily lifefrom here on out...I know it's hard..I've been totally paralyzed with fear, but damn it I won't give it that much power!!! Do you have access to ativan or something?? I take it whenever things are getting out of control in my head...this usually lasts only a day or two and then I'm fine again, but the ativan really helps control my out of control emotions which just feed off themselves and grow WAY out of control. Fear can be a powerful thing!!! I also personally know that fear is not from God and then when I think of where IT IS coming from that makes me even madder!!! and more determined to kick ass on it!!! Take some big breaths really concentrate on your breathing when we are fearful our breath gets too shallow and magnifies "symptoms" I'm sorry sweetie I know this is STINKIN' hard but you've done this whole crappy thing before if you have to you could do it again!! But you're not there right now...Keep up posted ok?
Tammy

[bonnie]

While I was on herceptin an ultrasound showed something in my affected breast. So they recommended a biopsy. I had the biopsy and there was nothing abnormal.

Next time, shortly after I'd completed my one year of herceptin, they thought they saw something in my unaffected breast. On the mammogram they found something but with their ultrasound they couldn't detect anything and recommended a MRI. My doctor ordered a Rodeo MRI at the City of Hope and there they still found something supicious but the doctor there actually called me and wanted me to come down to the City of Hope and have another ultrasound because he was confident they could find the area. He said they had extra sensitive equipment and a very good technician. So, of course, I had to do it. I was extremely anxious by this time. Anyway, I had the ultrasound, they did find the area and determined that it was probably a lymp node and that they were 99% sure it was not cancer. They wanted me to have a follow up in six months, this comming Jan., but didn't feel it was necessary for me to have another rodeo mri...which they had been talking about before...but simply another mammogram and ultrasound. Of course, I'm still not completely calm about the situtation but it did take most of the stress out of my mind and am now waiting for Jan. to roll around and see what they find this time. I think I've decided that this is the way it will be the rest of my life, finding things they have to check out and hopefully it won't be breast cancer. This isn't they way I wanted to live my life but I have no choice and I'm extremely glad I got herceptin and know it is an option if something bad really does show up.

Bonnie

[Lolly]

Hi Rhonda; I had a left mastectomy at primary diagnosis in '99. Long story short, I had recurrence confirmed by biopsy to left lymph nodes in 2001 and began Herceptin/Navelbine, was pronounced NED in August 2001 and have been on Herceptin since, occasionally having to add Navelbine back in for these stubborn nodes.

BUT, after the 2001 recurrence was confirmed by biopsy to left supraclavicular node and while waiting for treatment to start 2 weeks later, my right axilla and the lower left quadrant of my right breast became tender and swollen and we could feel enlarged nodes. We (me, onc and husband) decided not to do another biopsy feeling if treatment didn't resolve things then we'd look further. I started treatment, everything resolved within a few months, and as I said, I was pronounced NED. The following year, in April, I elected to have a right mastectomy to relieve my worry of recurrence to the right breast. My surgeon did a complete pathology on the breast and an enlarged axilla lymph node, and no cancer was found. However, he used the lymph node for "show and tell" at a conference to demonstrate what he termed "Reactive Nodes", lymph nodes that enlarge and "react" to the slightest provacation. In my case, Herceptin plays a part in this process, as my immune system is constantly reacting to the presence of Herceptin in my system.

The latest chapter in this story is that earlier this year, when I had my third recurrence, the right axilla lymph nodes were again enlarged, tender, etc. We decided we needed a fine needle biopsy this time, and lo and behold, it came back positive for Her2 cancer.

I guess the bottom line is, the only sure way to know what's going on with suspicious areas is a biopsy if possible, after going through appropriate scans to confirm if there's a suspicious area. I posted a link to the new CURE magazine issue which has an interesting article about recent studies involving a new type of MRI imaging for the breast that's very good at picking up abnormalities.

<3 Lolly

<3 Lolly

[Quiltlady]

I have had to havenmagnified views on the unaffected breast twice! Thankfully they do them right away before I leave the breast center. Each time they have disappeared on magnification! I was able to look at both films and could see that they had actually disappeared! I'm confident there is nothing there. The equipment is so sensitive now (thankfully) and this is something that happens sometimes as a result. I know the paniced feelings you must have right now but it can be OK...really!

[lu ann]

Dear Rhonda,

I was dx. 09/26/91 with stage 1 BC. While in my 5th mos. of tx. I had a T.I.A. (Transit eschemic attack) which is like a stroke without the long lasting effects. It took the team of doctors 2 months to determine if I had mets. I was devistated and freaked out. I had three children, age 7,4, and 1. It turned out to be scarring from the T.I.A.

A year later I started having abnormal mamograms. I went through several more abnormal mamograms and ultra-sounds until I finally got a second opinion from a lady doc who felt I should have a biopsy. It turned out to be a benign fybroadenoma.

Everytime I had an appt. with one of my cancer doc's, I would freak just waiting for the ball to drop. I finally quit going to see any of them and ignored subtle symptoms until I had full blown mets to my spine. The fear paralyzed me to the point I could not function.

I have not been N.E.D. since my reocurrance Feb. 04, but I don't live in that constant fear of it returning, I guess because it hasn't left yet. I sometimes feel that I'm better equipped at stage 4 then I was at stage 1 to deal with all of this.

Just try to take things one step at a time and try not to dwell on the "what ifs". It will make you crazy.

Blessings, Lu Ann.

[Lyn]

Hi there, I had a radical mastectomy in July 1998 for agressive fast moving BC, and like Lolly have been chasing enlaraged lymphs and skin mets ever since, I think my shortest NED was 2 weeks and my longest 3 months, but of course I have probably never been NED. In January this year I developed a rash on my remaining breast and a punch biopsy revealed skin mets with an underlying mass. My onc wouldn't even consider a mastectomy, he simply said when do you stop cutting. Pathology showed it was similar to the original but not the same, a new primary. I believe the reason for the change was from the herceptin, the HER 2 test was HER2+ the original was HER3+. I had radical radiation with Xeloda and carboplatin but a biopsy after treatment showed it was still there but this time HER1+, I have go to the stage now where I just say, I am not surprised but I have bigger issues to deal with at the moment, the severe radiation I had to the right side has now left me with hardly any range in my right arm and 3 weeks ago I re fractured my left shoulder, nothing to do with bones just clumsy. I keep saying I hope the next saga is good for a change, but of course it won't happen, for some sick reason I have been put on this earth to be tortued during my golden years, I was 44 when first diagnosed. I hope yours is nothing to worry about and you can get on with your life, like some of the others this is our vocation in life to pave the way for the newbies and hope they don't have to suffer as much as we have.

Love & Hugs Lyn