Reoccurance-Please Help Me!!!!!!!

[Jenna]

Hey guys -
2 years ago I underwent a bilateral masectomy for DCIS with microinvasion. No Rads or Chemo (Node Negative) - however, "dirty margins".... ER-,PR- HER2+3.

Now 2 years later - it has reoccured in the "dirty margin area" - and the doc reexcised me ... and performed the free tram flap procedure to take most of the skin and some muscle away. More nodes were removed and they came back negative. This time she got clear margins. It was DCIS with microinvasion again ... but there are some small foci of invasive ductal carcinoma.... The path report said "residual breast tissue" Er-, PR-Her2+3. The tumor was .6mm

At any rate, doc now recommending chemo + rads.... Chemo Taxotere/Cytosin plus herception for a year followed by rads. I feel this is so aggressive in that they are treating DCIS as if it were invasive and spread all over my body. (Bone and CT scan came back clear) .... (I'm also skeptical of chemo - not sure I want to damage perfectly healthy cells for no benefit)

Anyone have any comments - or experienced a similar thing!
Any input would be appreciated!
Jenna

[sherri]

Jenna,

HER2 is a very aggressive cancer, in my opinion you go after aggressive one with aggressive tools! You don't want this comes back again in another part of your body! .

[bobbiw]

I tend to agree with Sherri. A year ago I was diganosed with HER2+++, Er+Pr+, no node involvement, clean margins, tumor 2 cm. I opted to treat aggressively, mastectomy, chemo (AC then Taxol) now on Herceptin and Tomoxifen. I wanted to be agressive with this aggressive diagnosis.
Good luck to you.
Bobbi

[Chelee]

With this aggressive type of cancer...I would want to go after it with everything I could. So I would have to agree with the others here. Everyone has to decide whats best for them...but personally if it were me...I would do the chemo, rads and herceptin. I would have to do it for peace of mind knowing I did all I could to keep it away.

Good luck in your decision regardless of what you decide. Its not an easy road to go on...but it is doable.

Hang in there...all the best.

Chelee

[karen raines hunt]

Dear Jenna,

I agree with the other women. This is an aggressive cancer and fortunately now, we have more weapons to fight it. Do what your doc recommends.

Karen

[tricia keegan]

Jenna fight this now with the "big guns" and hopefully you'll never experience this again.

Herceptin is a breeze and chemo do-able so go for it as you can't take a chance with this form of the disease!
Tricia

[Yorkiegirl]

I say treat it now, with all that you can.

[sassy]

Totally agree with everyone else. Aggressive disease calls for aggressive treatment. Its not exactly fun, but it is doable.
________
Best Portable Vaporizer 2011 (http://vaporizerinfo.com/)

[tousled1]

Jenna,

I agree with everyone else -- treat the breast cancer aggressively. You should have the chemo and when you finish that you should start the radiation. You should also have the Herceptin while you are receiving the radiation treatments. The last thing you want is another recurrence and the only way to prevent that is to be aggressive. Best of luck to you. Keep us posted.

[suzan w]

I will add my 2 cents worth! Treat this as agressively as you can now...you will have no regrets!

[StephN]

I have two friends who started out like you with DCIS. One made it to about the 5 year mark with only mast and no chemo. She has been plagued with tumerous nodes and ribs ever since it returned. She is also hormone positive and the hormone suppressors only help for a while.

The other woman was like you with hormone neg and no chemo and recurred with distant mets at about three years. She is stable and on Herceptin for the rest of her life - as I am.

If you can have the Herceptin now, you may save yourself years of treatment down the road. It is not easy, but that is reality with many Her2 positive patients.

[Bev]

Ditto all above. None of us have the answer but not having chemo and rads didn't work the first time around for you. So. With ERPR- , you can't rely on other hormonals working. If I were you I would do it. Chemo causes problems for a small percentage,it may not work, but it is all that is being offered right now. If nothing else, do taxol and Herceptin. Also I think it would be only the Herceptin for a year. You may be doing 3 mos Cytosin + 3 mos T + H, then 9 more mos of H. H is very do-able. Bev

[MGordon]

I pray you find your answer in your heart, but as I sit here at hospice with Lisa I felt I just had to put in a quick post.

In 1999 Lisa was diagnosed DCIS 1+ ER+ PR+ HER2+++. We battled with a masectomy (single) and agressive Andromyicen/Cytoxin/Taxol chemo. Removed 20 nodes and all were clean, ALL margins clean. But even with this regime, Lisa had recurrance in 2003. Now liver, brain, bones, and lymphatic system mets. Since recuurance the battle has raged - including Whole Brain Radiation.

FIGHT! Use every weapon at your disposal. Trust your healing team. I cannot testify personally how hard chemo is - but I have been by Lisa's side through Zometa, Herceptin, Gemsar, Taxotere, Navelbine, Xeloda, revisted Taxol, and a brief fight with the Tykerb trial. I've seen how hard this fight is, but I know that this board can help you get through it - and to not treat this now with everything we've could COULD cause regrets.

Find your faith - focus on your center - and let this board pray for you.

Love and Light
Mel

[KellyA]

The thing that I have told myself and my friends and family since the begining of this nightmare, is that I never want to look back and wish that I had done more when it is too late. I decided to go "balls to the wall" (a saying that my hubby uses, that I used to hate) from the beginning and hit it with everything I had. I won't know if I beat this thing or not for a long time, but I will always know in my heart that I did EVERYTHING that I could regardless of what happens in the end. I have learned with this disease to live life hard- to work hard, play hard, laugh hard, love hard, most of all, fight hard with all that's in me. Chemo sounds very scary, it was a terrifying thought to me, but it was not at all how I imagined it. I think that I watched too many lifetime movies in the past :-) and had a very distorted image of what chemo is like. The drugs now prevent nausea, sickness, and most other side effects that I used to know went hand in hand with chemo. I worked through the entire thing and was able to take care of 3 young children at home. I got a new "haircut" and was tired, but still was able to live and have fun.

It's a big decision to make- pray about it, remember your family and friends, and never take anything for granted. Life can turn in a second.

Love,
Kelly

[saleboat]

Hi Jenna,

I would have done anything to avoid chemo when I was first diagnosed. It is so hard to accept the huge threat to your health, when (at least for me) I felt so healthy.

I needed very aggressive treatment, and there wasn't really any way to avoid it. Maybe someday women with my sucky pathology report will be able to skip chemo, but we're just not there yet.

I think the days in which cancer was defined by stage and spread are over-- and Oncs will make treatment recommendations based on biology-- the biology of the cancer that you have/had is VERY aggressive and it clearly wants to spread despite the surgical intervention that you had the first time around.

Chemo is not a walk in the park, but it is doable. You have a great chance of being cured by it, plus herceptin. Without chemo and herceptin, I think you'd be rolling the dice.

Good luck with your decision.

Jen

[Andi]

Jenna- I agree with all of the above posts. Like Saleboat, I had to treat my cancer agressively. I felt so very fortunate that I was able to take Herceptin as part of my regular course of treatment so that I could get the maximum benefit from it. I had the most discomfort with the dose dense A/C. With the Taxol I had no nausea, in fact after my treatments I was always famished. The Herceptin by itself was very tolerable and my radiation was also uneventful. If you can deal with these treatments now, hopefully, it will prevent mets in the future and needing additional treatment.

[rinaina]

just another voice saying hit it with everything you got and everything the oncs have to fight this beast. her2+ is just too aggressive of a cancer to take a chance. good luck with your decision.

[Hopeful]

Jenna,

Is your onc willing to give you Herceptin without chemo? Since you have had local recurrence, rads make sense; radiation also is synergistic with Herceptin, so that would give you some added protection. I chose not to have chemo for a 1.3 cm, node negative, ER+/PR+ tumor, however, my onc is willing to treat me with Herceptin without chemo. Chemo or no chemo, the targeted therapy is worth having, IMO. This is a personal decision and never an easy one. Good luck to you, however you decide.

Hopeful

[cafe1084]

Jenna,

I've taken the same path most of the other members have--"balls to the wall" HA HA HA, full-force, head on, in your face action against my cancer. Was a fairly small place, node negative, but after all my research of her2 +, I knew I couldn't afford to leave any stone unturned. Being young and in excellent health is on my side right now to deal with the more aggressive treatments. If I would have waited for a recurrence or metastasis to begin chemo, it could have been while dealing with co-morbidities or a worsened stage of cancer...or it could be the case of "a little too little, a little too late".

Like everyone else, you hope to fight it once and never ever hear the words recurrence or metastasis. Truth is, aggressive treatment or not, none of us have the guarantee of a long, full life because of the cancer type and its affinity for traveling. It is certainly the decision of a lifetime, but whatever your decision, it has to be one you can live with. You don't know how strong you can be until you're forced to be-- I didn't.

Praying you find clarity,
Stephanie

[AlaskaAngel]

Lani has posted many, many very interesting pieces of information about DCIS in the Articles forum that you might find helpful if you try a search using DCIS there.

Although the link I will post is a March, 2004 one it also provides some perspective about assumptions about any consensus regarding treatment of DCIS:

http://www.oncolink.upenn.edu/resources/article.cfm?c=3&s=8&ss=23&id=10589&month=03&year=2004

Treatment choices are always very individual. I would recommend getting several professional opinions, especially if possible from an institution at the forefront with HER2 research. In general I agree with Hopeful's suggestions.

Knowledge and beliefs regarding the superiority and efficacy of chemotherapy for HER2's are changing at many levels, even though actual change in collective thought and action can take much longer.

AlaskaAngel

[RobinP]

I agree with the aggressive approaches mentioned above. At the same time, I think Herceptin with Taxol and no chemo is an option as the BIRG study from this week's newest news releases says that HT is just as effective as ACTH, meaning chemo or AC treatment had no advantage on survival relapse outcomes compared to just Her. and taxol. See Dr. susan love website blog on the san ant. breast conf. for more information of the San antonio breast website.

[Jean]

Jenna,

I feared the Her2 much more than the treatment.
I also had a small 6MM tumor, node negative,
clean margins. But please do remember her2 likes to
"Travel" this disease is not a fair player. It is much
easier to treat this monster while contained once
the horse is out of the barn the fight becomes
so difficult.

You will often read on this site how we are all different
and the cancer reacts to each one of us differently, well
the constant thing about her2 is that it is nasty. Don't be shy
with this.....I did choose to treat with full guns and
I will share with you I still live in fear....Also please do keep
in mind that there is a new generation of her2 early stagers,
the results of which are still not out. The last year or so
many early stagers have chosen to take treatment and
we will learn more as time passes. Hopefully we may see
less recurrence and stop this disease in its tracks. I do
know that Dr. Slamon told me that chemo works well with
herceptin and who knows that using the chemo with the early stagers
may just be our winning ticket? No one has any answers just yet.


Wishing you the best,
Jean

[MJo]

I agree with everything said here. Please treat this recurrence aggressively. All the very best to you. MJO

[Adriana Mangus]

If it would make you feel better, you may want to get a second opinion. I'm not familiar with any of these meds. The more you know, the better, you need options...God bless you.

[chrisy]

Jenna,
Sorry you are having to deal with this again. You asked for advice, and I guess you can tell where people stand on this question!

You also asked for similar experiences. I had a similar experience: initial diagnosis of DCIS, mastectomy, dirty margins, reexcision. I was not offerred chemo or rads, and at the time of my diag, they did not even test DCIS for ER/PR/Her2. Two years later, I had a recurrence to my liver. I'm not saying that would happen to you - remember, 99% of DCIS does not recur. But that was my experience. Although I prefer to look forward, I guess part of me will always wonder if things might have gone differently.

You are fortunate to have doctors willing to treat this aggressively. There is more known about this now - in fact there were several posters at San Antonio dealing with the question of how to predict which DCIS is likely to recur. I haven't unpacked any of my "stuff", but ask your oncologist about this.

A second opinion is worthwhile. In the end, you will have to make the decision based on the best information you can get. Of course I'm biased, but if it was me with my 20/20 hindsight, I'd go for confronting this aggressively.

good luck with your decision

[sarah]

I'd go for the chemo and radiation. treat it aggressively.
good luck
sarah

[Jenna]

Hey guys - Thank you all for your opinion on my reoccurance. I thought I'd share some important information with you all regarding my decision to receive chemotherapy or not.

I went to the University of Chicago - for my second opinion - I met with Dr. Fumi Ogalpade (she specializes in young women's breast cancer & genes) .... At any rate, their multidisciplinary board reviewed my case and is recommending radiation only. In their words if I did chemo it would be "overkill"....

Here is the difference. My tumor was .66 mm (most of which was DCIS) .1mm was invasive ductal cancer. No Node Involvement. Bone Scans Negative. CT scan Negative. Clean Margins. Although this was a reoccurance the area that was invasive was so small therer is no reason to do chemo (the risks outweigh the benefits in my case.)

My previous doctor recommended a/c taxol and herception .... She had not performed the ER- test, FISH test, IHC test until I asked her to perform it. She just assumed since I was young she'd give me the big guns -without really studying my case. Obviously, I felt unsure of all of this and did a lot of research ... and got my second opinion from a comprehensive cancer center.

At any rate, I want to encourage everyone of you to seek second opinions if you are unsure of your treatment plan... It is worth the extra cost and the extra time it involves! Doctors can differ in their opinions. In my case, the difference was extreme.

At any rate, I hope my story will inspire some of you who are unsure of your treatment plan to ask questions. Not everyone who is young should receive chemotherapy.... The risks are tremendous.

Thanks for your well wishes.
Jenna Hill

[rinaina]

I am happy you got another opinion and that you are more comfortable with it. I am a firm believer in getting other opinions and in some cases more than one to satisfy oneself that you fully investigated all options and became more knowleagable, enough so to make an informed decision based on all opinions. All the best to you.

[Hopeful]

Jeanna,

Your experience is a great lesson to all of us. Thanks closing the loop here. I am glad for you that you now have a treatment plan and a path you believe in. Good luck to you, and happy holidays.

Hopeful