My Dear Sister....

ammebarb · 03-27-2009, 08:05 AM

Hello Group. I am a 25 year survivor of second stage breast cancer, diagnosed before they tested for Her2. My only sibling, my younger sister was diagnosed recently and had a lumpectomy two weeks ago. She is strongly Her2 positive, ER -, PR- and had a less than 1cm. lesion. She just found out Tues. that she had two microscopic cells in a node. She is seeing an oncologist on Tuesday for discussion about additional treatment. She knows she will have radiation, with the possibililty of irradiating the axillary area, or having additional surgery to take more nodes. Everyone is impressing upon her the fact that this is an agressive cancer, but her breast surgeon has said that she has a 92% chance of nonrecurrence (higher with Herceptin). Does this sound right? Is Herceptin always given with chemo? Is there a specific order of treatment? How doable is chemo these days? (Mine was an old regimen that isn't given so much now---lasted a year on a three week cycle).

I posted to Caregivers Forum and it was suggested that I might get more responses here. Thanks so much for reading. I am her "filter" for now.....she isn't into digging for info on the computer, so I share encouraging news, or important cautions. I appreciate any responses.

Barb

Believe51 · 03-27-2009, 09:32 AM

Welcome Barb, what a great sister you are. I know that when my husband was diagnosed with stage IV Inflammatory bc, life itself was overwhelming. I did and still do all the research for him. I filter out what I can store in my brain for later use and share what is important for him now. I feel this way he can concentrate on healing just like your intentions for your sister.

Tell dear sis that chemo is much more doable than when you did yours, so just keep that in mind. I cannot supply you with some of the details you search for but our other sisters can. I am looking forward to getting to know and support you and your sister. Tell her she is now in my prayers.>>Believe51

chrisy · 03-27-2009, 09:52 AM

Hi Barb,

This must be so hard for you to see your sister also having to face down breast cancer. But she has a living role model in you that it can be done.

The statistics show that Herceptin cuts the recurrence risk by over 50%. So if 92% nonreoccurence is the right stat (and I'm not sure about that), her risk to recur would be 8%, reduced to 4% or less with Herceptin.

I'd ask about the 92% number, is that the statistical average for all BC tumors that size/grade and with that nodal involvement? Or is that 92% ONLY for her2positive?

But either way, herceptin is really a must for all early stage, her2 pos cancer fighters.

I don't know what your chemo experience was, but I had taxol/carboplatin/herceptin for 6 months and felt good throughout. I never had any nausea or other acute problems although as it wore on I did feel more fatiqued.

The standard of care is herceptin+chemo followed by herceptin alone, or sometimes chemo followed by herceptin. Typically the chemo components would include a taxane, maybe carboplatin, and maybe adriamycin. My opinion is its a small price to pay for knowing you did all you could, but that's just my opinion.

ammebarb · 03-27-2009, 09:54 AM

Hello Believe51. Thanks so much for replying. We are appreciating very much the prayers that have been offered. I will also include you and your husband in mine.

Barb

ammebarb · 03-27-2009, 10:01 AM

It is good of you to reply, Chrisy. Thanks for the info...now we wait until her appointment. She seems to be readying herself for doing whatever gives her the best chances. It is reassuring to hear that the chemo may be a bit less daunting than when I took it. I absolutely hate that she is having to do this, but I know she can get through it. It is so good to have a group of warriors to talk to.

Barb

Sheila · 03-28-2009, 06:34 AM

Barb
What a great role model you are for your sister...Congratulations on 25 years....WOW! Just glancing at what you and she already know, Herceptin is a definate, and probably a chemo regime TCH possibly....chemo is so different from years ago...they are so more prepared for any side effects....
Please know that we are here for you both, and you are both in my prayers for an easy journey...you will be a blessing to your sister on this journey!

MJo · 03-28-2009, 06:57 AM

If your sister is ER/PR neg, she won't have the protection of taking an aromatase inhibitor (Femara, Arimidex) for five years. I would strongly consider Herceptin to give her some protection.

ammebarb · 03-28-2009, 09:18 AM

To both Sheila and MJo--

Thanks so much for responding. I spoke with my sis this morning and she is sounding like she is preparing for the oncologist's recommendation. I told her that I hope he throws everything he's got at her. She's begun to consider the order of things, so I think she really is readying to do what will give her the best chances. It hurts like crazy for me know she is in this battle, but I'm beginning to see her for the strong woman she is. (My little sister!)

Thanks again, and my best wishes to you.

Barb

Sherryg683 · 03-28-2009, 05:01 PM

Most early stage HER2 positives do go through some sort of chemo because of the agressive nature of the disease. Herceptin is given with or follows chemo. Your sister did have some lymph node activity, even if it was micropscopic. My surgeon only agreed to do a lumpectomy if I followed chemo with radiation, which I did. I would guess that her oncologist is going to want her to do some sort of chemo along with herceptin. I agree with you in wanting them to do whatever possible to keep it from returning. To me, radiation alone just doesn't seem to be even something that would be considered. As far as chemo being do able..it is. It's not fun as you know but they can control the nausea so much better now days. ..sherryg683

ammebarb · 03-28-2009, 06:35 PM

Thanks for replying Sherry. I'm beginning to get the general "picture". It seems that today's chemo regimens are a bit shorter than mine was, and others have told me that there is more help these days for side effects. I sure hope it's as "doable" for her as it can be. She'll know a lot more by Tuesday, thank goodness. Sending my best wishes for many, many, many many more years NED!

Barb

caya · 03-29-2009, 08:50 AM

Hi Barb,

Sorry your sister got diagnosed, but it sounds like she is early stage. I was early stage also, but because it's Her2, I told my onc. to throw eveything in the arsenal at me - chemo is very doable, usually 4 or 6 rounds. I had FEC (x3) and then Taxotere (x3), a common chemo regime used in Canada and other commowealth countries. The secret is to take the anti-nausea meds before the nausea actually starts - you don't want to play "catch up" with it. Also take all the pre-meds the drs. prescribe, and drink alot of water before, during and after the infusions.

Herceptin is a piece of cake compared to chemo. For me the only real side effects were extreme fatigue the first 4 -5 days after the infusion, and then some swelling in my left ankle. After the first 90 minute Herceptin infusion (the loading dose), the rest of the infusions are usually 30 minutes. I had mine slowed to 60 minutes because the 30 minute one made me a bit nauseous.

Hair will start to grow once chemo is done, although many of us experienced a slower hair regrowth during Herceptin. My hair grew in much quicker about 3 -4 months after I finished Herceptin.

all the best
caya

ammebarb · 03-29-2009, 09:31 AM

Hello Caya. Thank you for replying. Every little bit I learn is important. The tips are especially welcome--I am so grateful for any bit of info that may help my little sis. Hearing from the group has gotten me ready for an agressive approach, and knowing that so many of you have done it and come through it is encouraging. Bless you for answering and may you have continued good health!

Barb

Barb