TRIPLE POSITIVE GROUP

----Posted this in main Her2+ Forum & also posting here----

Hello ladies! This is my first post. I have been reading for a couple months. This forum is priceless!

Here's is my story:

-initial path report IDC 2.3cm Grade 1, ER 90%, PR 90%, Her2+ (FISH ratio 2.0), nodes look clear

-second path report at MDA Houston - notice Her2 - IDC 1.8cm Grade 1, ER/PR 90%, Her2- (FISH 1.81), nodes look clear

-dbl mastectomy by choice at MDA - I am 48, with wonderful DH & 3 children - I want to take no chances of Her2+ issues

-surgical path report - IDC 1.6cm, Grade 1 or 2 (discrepancy on report - values add up to 5, so still Grade 1, but says Grade 2. Waiting for response from pathologist), ER/PR 90%, HER2 + (FISH ratio 2.0), 1mm micromet in 1/5 sentinel nodes. -------- self contained, no LVI, very negative margins, 5 SENTINEL NODES REMOVED (4 were tiny, 1 normal size, all clear during surgery), the normal sized node ended up with a 1MM MICROMETS.

-I met with surgeon last week. MDA nomogram says 3% chance it is in other nodes, Sloan Kettering says 5%. OS doesn't expect RO to recommend radiation bc of my tumor size. I am left with the decision of watch nodes via US or go back in for ALND.

-Surgeon says lymph nodes & chemo are treated independent of one another.

-I meet with MO Monday & RO Tuesday.

-Before surgery, MO said if tumor stays under 2.0 cm, I would have 12 wks Taxol w/ Herceptin

-I have have BMI of 22, work out regularly doing spin & barre classes, eat pretty healthy & have slight CORDING from SLND. I am ready to do what's I have to do to rid my body and every cancer cell!

-Below are my questions/concerns. Any info/opinions/advice you girls could give is much appreciated!

1. WIll my chemo be changed due to the 1mm micromets?

2. If chemo doesn't change, will chemo (Taxol+Herceptin) be enough for the micromets or should I have ALND?

3. Should the low Her2 & grade 2 (was grade 1 on 2 biopsy results) have any affect on my decision to have ALND? I am worried I would experience more severe side effects. Although if that's what should be done I am ok in dealing with side effects.

4. It looks like I may have a possible decision to make on LNodes between wait & watch, ALND, or radiation to MX breast & I have no idea what to do!

I am having a difficult time finding anyone with a similar diagnosis!

Thank you so much girls! Your knowledge & sisterhood is invaluable

TYE89,

I answered you on your other thread, but I wanted to welcome you to the Triple Positive thread!

I hope you have productive meetings with your oncologists this week.

Bareclaws. .  Feeling much better two days out.  I go for labs Monday and they will check the platelets again and according to oncology nurse they will more than likely adjust the chemo.  The crazy thing is that I was out of breath and thought it was a normal side effect, I never thought it was my platelets being low.  Three more treatments of the TCH and then 6 treatments of Herceptin alone.  I cannot wait till this treatment is over!  Thanks for checking on me. 

Melanie

moody blues, this explains it better than I can:

http://www.itpfoundation.org/itpdefined.htm

TYE- my diagnosis is very similar to yours. I am awaiting my final surgical pathology results this Wednesday when I also meet with the MO. I have been told several times over the past few weeks that my tumor is a head scratcher due to it being low grade but her2+. I was node negative out of my BMX. I'm anxious to hear their recommendations on Wednesday. I'll update once I know the next steps.

Hey everyone. This week is Herceptin #11 for me. Hitting the home stretch! Luckily I don't seem to have any major SE's from the herceptin or the tamoxifen. Except hot flashes...but they started when the chemo threw me into menopause.

Just a quick question for those gurus out there who know these things. I'm just curious...Hopefully I never have to find out, but if you have a recurrence, CAN they give you the same chemo? Or is it once you have had a certain type of chemo you can't do it again?

Thanks Elaine. That's interesting. I wonder why some are once and done and others you can do again. Anyway...was just curiosity. Thanks for answering!

Hello, all!

I had my second surgical consult today and got the results from last week's MRI. Confirmed a single tumor (they described it as 15 mm x 6 mm - US had said 10 mm) with no other lesions in either breast & no evidence of lymph node involvement!

Next stop is lumpectomy on August 15th with sentinal node biopsy at that time. I haven't met with an oncologist yet, but I'm still hopeful of avoiding chemo. Obviously I'll do what I must, but radiation would be much easier to manage, especially since my husband works in another state. If he has to come home to take care of me, we'd have no income (or 60% if we both take FMLA) but a better support network; if I can get treatment there, he can still work (part in-office / part at-home), but he'd be the sole caregiver as we don't really know anyone there. From what I've reading, with rads only, I think I could manage mostly by myself here with our support network.

Has anyone else here had a similar situation, either in regards to work/support and/or in terms of getting treatment somewhere other than where you usually get care?

Elaine, thanks for the encouragement! I've never had any experience with BC or any other serious illness so I guess I'm planning for worst case re: treatment, SE, etc. and hoping for better!

HapB, I admire your strength in caring for yourself, as so often we women have to do! I am HER2+ as well as ER+/PR+.

Debiann,

I'm on Aromasin and have dry eyes. Dry mouth? Sort-of, but I'm not sure I can blame that solely on Aromasin. I'm on a three-drug cocktail for high blood pressure, and recently added Fosamax to my list of prescribed drugs. (I now have full-blown osteoporosis -- Thanks, Aromasin + Zoladex!) Fosamax can make your mouth feel dry and make swallowing more difficult.

In general, I feel like the Aromasin has dried me out. I've always had oily skin and hair, and now I don't.

Nice to hear from you Debiann!

FleurDeLis49,

Sorry you had to join us. I'm single and live alone, just me and two furbabies at the time of my treatments. My elderly mother lives nearby, but she wasn't really able to help much, but I knew if I absolutely needed her I could depend on her. I worked full time during treatments, but I don't have a high stress job either. I took care of my house and yard work, maybe not as quickly or neatly as normal, but it got done. I took naps during lunch hour a lot and tried to schedule my treatments so that I could go directly home and rest, but really didn't have the awful side effects that a lot of people do. Maybe you could wait and see how your first treatment goes and go from there. Of course if you have to have something set in stone before treatments start, I can understand that too. We do what we have to, to make it thru whatever we face. Good luck, whatever you decide.

hi docmama,

It really wasn't that bad, to me at least. I finished the clinical trail for it in February. They started us off on a certain amount of Imodium per day and then tapered it down. I eventually stopped the imodium all together. But according to the nurse coordinator over the trial I was one of few that did that, most stayed on the Imodium as needed until the trial was over. But as you know we are all a little different in our side effects. I also didn't have really bad side effects with the other chemo. No nausea, loss of appetite or anything like that. I don't know if I've got a strong stomach or digestive tract, but whichever, I tolerated all my treatments well.

Just tuning in after a long absence from the site. Am now 66, and 15 years out after dx in 2002 and doing the "old" tx that is less frequently used now (CAF x 6) + rads and a brief run of tamoxifen. No Herceptin and no recurrence. The chemo followed by the brief run of tamoxifen resulted in complete loss of gender/sensuality/sexuality, so that has been an ugly experience.

There was no counseling in advance to assist me with questions of sexuality in making the decision about tx, and none since.

Several years after tx, I attended a newbies intro session offered in Seattle to see if the onc nurse presenting the intro to tx would provide any discussion of possible sexuality issues post-tx, and oncology still wasn't discussing the topic AT ALL with newbies....I stayed afterward to raise the question one-on-one with the onc nurse who presented the session, and she told me that my "situation was rare" and that I should seek counseling with the hospital psychiatrists. I contacted them, and they said they unfortunately could not take patients who were over 2 years post-tx due to the demand for counseling by those more recently diagnosed.

So... how would an onc nurse really be aware whether more people suffer from it, since all they see are those newly diagnosed or still in treatment? I realize that sexuality loss isn't life-threatening, but it IS something patients should consider when contemplating treatments that are only randomly successful. No one can even say for certain that my tx "worked". I worked in medical care personally and I remain appalled by that bias.

A.A.

kae,

Zoladex is a pill that is inserted in your subcutaneous fat (for me, my gut) with a giant needle. My nurses ooh and ahh at the size of the needle every time, but the injection doesn't really bother me. It doesn't leave a bruise, and only causes bleeding when the nurse hits a vein.

You could ask for some numbing cream like Emla ahead of time if shots bother you.

Good luck!

Yes, I am thinking about an oophorectomy. Unfortunately, my new OB/GYN is on leave (husband recently died of cancer). So, I'm waiting until September to talk to her about it.