please help i am so confused

[Unregistered]

I was recently diagnoised with multifocal breast cancer and was "lucky" a lumpectomy was an option. pathology came back and I am her2 positive- i will get the exact numbers today when igo back and see the surgeon. Luckily it was caught early and I am at Stage one. I am told that b/c multi focal ovaries ned to go and the question becomes which other drugs may work in the long run. Does Tomaxafen work on Her2 positve or does it depend on levels?
what are my options? please help I am 43 w/ two young children ....
thanks

[Joe]

The following was taken from www.nih.gov (http://www.nih.gov)

multifocal breast cancer

(mul-tee-FO-kal)


Breast cancer in which there is more than one tumor, all of which have arisen from one original tumor. The tumors are likely to be in the same quadrant (section) of the breast.


It would seem to me that your treatment options would be the same as if you had only one tumor.

Regards
Joe

[Sheila]

You would need to find out if you are estrogen receptor positive for tamoxifen to be of help in your treatment. I am sure you will find out what is best when they get all the reports in. The fact that you are node neg. is good. Did they do a sentinal node biopsy?
Hugs
Sheila

[Unregistered]

The most important info you need will come from the path report.
This will determine the coarse of treatment. It is important to know estrogen and progesterone sensitivity in addition to her2 status.
I also had multifocal IDC but wasn't a candidate for lumpectomy due to it being throughout the breast.It is difficult to find much info about multifocal disease the studies on it have been very small and limited.
Just remember to ask questions even if they seem silly. The more informed you are the more peace of mind you will have.
Good luck!

[TriciaK]

This is the place to get support and info and love. Someone on this board has been through your diagnosis and everyone here understands and will be totally supportive. The main thing is to take a big deep breath and realize that there has never been more hope for BC than there is right now. A positive attitude and faith there are answers will go a long way. Don't panic---you can do this! Don't be afraid to post often and to ask all the help and answers to questions that you need. We've all helped each other and we will be here for you. Trust your oncologist and other doctors, but do all the research you can. Take someone close with you when you go to the doctor or have tests, take notes and ask lots of questions! Remember, you don't just HAVE cancer, you are FIGHTING cancer! Many of us here have long outlived our doctor's prognosis and we intend to keep fighting. Herceptin is a miracle for her2+ BC; diet can make a difference too. Remember the words of Winston Churchill: "NEVER GIVE UP!" Hugs, Tricia

[mts]

I am 42 w/ two young children too.

Did you have a breast MRI? For me, only one tumor was visible on Ultrasound and none on Mammogram. The MRI was the only modality that picked-up all the cancer. I too had multifocal disease and was very pleased w/my lumpectomy (actually had 2 lumpectomies on same breast). Completed chemo in March '05 and then rads in June. Did really well
Eventhough I was technically a Stage I, I was treated as though I were a Stage II.

My largest tumor was 1.7cm and the smallest was .7cm Generally, the largest tumor dictates the Stage, but with me, they added all of them up and decided for Stage II due to my HER 2 status. My Tx plan was considerably more aggressive (not that any chemo is "lite") also because of HER2 positivity.
I am pre-menopausal and am taking Tamoxifen for my miniscule ER 5%+ PR- cancer. I figured I am better off taking the Tamoxifen for that 5% than not. I am also on Herceptin.
Doctors are suggesting I remove the ovaries in a couple of years and get on an aromatase inhibitor (Arimidex).

I don't freak-out anymore. I just try to be as informed as possible. This site is a superb location for information and support. As you can see, we are all really quick to support you and provide you with whatever we know. Just remember these are just opinions... you will see how important it is to stay on top of the latest and ultimately make your own decisions.

The one piece of advice I will give you is "don't fall in love with your doctor". Have no fear to seek other opinions even if your oncologist is your husband!!!

My best to you,

Maria

[mamacze]

Dear Sweet Angel with Two Precious Children,

What a punch in the gut this diagnosis has been for you and how fortunate we are that you stumbled on this wonderful web site. Here you are trying to find your way through a maze of difficult medical terminology, keeping yourself healthy, all the while caring for and worrying about your precious children.

By now you know that your path report is so important as it will determine your course of treatment. A second opinion is usual and customary and will give you peace of mind.

I am 49 with 4 children; all of us here will do what we can to help you. Please post again and let us know how you are doing.
Love
Kim from CT

[al from Canada]

I'm very sorry that you have to go through all this. You have to wait for that path report before talking about treatment plans. looking forward to your new post.

Al

[panicked911]

thank you all for your quick and supportive replies. Got the path reports and I start tomaxfen today - I am 80 percent poitve estrog and 70 perc. posit progesterone and the hers 2 is 3 plus. SInce both tumors measured 1.2 (only showed up on a MRI) I am boarderline for needinI am having the tumors oncotype tested - those results should be back in a week.
Any suggestions on taking the tomaxefen and dealing with the hot flashes, mood swigs etc ..? I am just so greatful for all of your help.

[Sheila]

Not all people experience the hot flashes & mood swings on tamoxifen...I have them & I'm not on it! Dress in layers...easy to shed...avoid the sun as Tamoxifen does make some people sus sensitive....avoid caffiene & take one day at a time....will you be getting Herceptin for the Her2+...I would try & see if you can...it is very promising & tolerable...like a little extra insurance. You will find lots of love & support here through your journey....feel free to ask anything....someone has probably been there.
Hugs
Sheila

[panicked911]

dear sgeila:
thanks so much for your advice on the tamoxefen caffein and sun my two mainstays .. just another thing I willhave to chnage in my life. For now we are trying the tomaxifen and if that does not work then they are going to put me on herceptain - at least that is the plan for now. I guess once the onco testing comes back some time next week will wait and see.
I knw that i am very fortunate for someone who has this dreded disease- i am being treated at a top notch hospital - memroial Slaon Kettering in New York, My multi focal was in the same quadron so lumpectpmy was possible instead of full mastectomy, it was caught very early and although Her2 positive I am also progesterone positve which makes tomaxifen a viable choice of adjuvent therapy along with radiation.
thanks again and I will look foward to "speaking" to you again.
regards,
Susanne

[Sheila]

Suzanne
It sounds like you are in good hands & on top of things....you will do fine!

Hugs
Sheila

[mamacze]

Dear Susanne,

It sounds like you got knocked off your horse but you have already climbed back on with good doctors and good advice...not much you can do for those darn hot flashes; just know that whole transition may make you short tempered; dress in layers; have extra camisoles on your night stand for when you wake up drenched and know; this too shall pass..
Love Kim from CT

[panicked911]

thanks to you all - can't tell you how much it means to be to know that I am "not alone" ..

I am wondering is anyone else out there is not just her2 positive but also has estrogen levels 80 and progesterone 70 and has had success w/ tomaxifen. B/c of the multi focal the ovaries are clearly implicated and now the choice is see how i do w/ tomaxifen or go and eliminate ovaries completely. Any thoughts?

[al from Canada]

Dear Susanne,
My Linda is also Her2+ and ER+.
I'm just wondering how many women are taking herceptin + tamoxifen? It was always my sense that there is cross-talk between HER2 and Estrogen Receptors and this usually leads to tamoxifen resistance.
Regards,
Al

[StephN]

Dear "panicked" -
Try to get a little calmer as stress is BAD for us cancer fighters!

Why don't you post your question about Herceptin and Tamoxifin as a new thread? This would give you a better chance to get some answers than being buried down in this thread.

I am hormone neg, so can't take anything other than the Herceptin. But, there are lots of young premenopausal women who are addressing the very same problem. Many of them are taking other kinds of hormone suppressors. You also may want to "search" this site as there are old posts on this subject.

good luck!

[kk1]

Dear Panicked;

I would make sure you and your doctor read the more recent literature on tamoxifen resitance and her2+ (do a search on tamoxifen resistance on this site and you will get alot of hits).

Recent studies indicate that you should not be on tamoxifen without also being on herceptin. As Al said there seems to be cross talk between her2+ receptors and er+ receptors. If you are on herceptin alone then the er+ upregulates and become more active. If you are on tamoxifen alone then the her2+ upregulates. Those cancers cells are very sneaky. Thus you really want to be both herceptin AND tamoxifen.


kk1