a bit worried..ok a lot worried

[rinaina]

After reading carolm's post asking if herceptin worked as well for late stagers as it does for early stagers, it made me think of another topic. I am stage I her2+ but er/pr negative. I have read on this forum that being er/pr- is much worse then being positive. I realize that I can't be treated with tamoxifen or arimidex or any of the hormone suppressing drugs so my only defense is herceptin. I thought though that being stage I with no node involvement meant I had a really good chance at beating this cancer despite being hormone negative. Now I am worried that because I am hormone negative I have a worse chance at beating this. Can anyone shed any light on this before I get all bent out of shape? Thank you.

[Sherryg683]

Girlfriend, you can't have it all..lol. From what I've read if you are triple positive, you have a few more hormonal drugs to treat the cancer with. But being such an early stage, chances are you won't have any cancer to worry about treating once they are done with you. You don't want Tamoxifen anyway..my friend is on it and it made her fat,...lol. ..sherryg683

[rinaina]

Thanks Sherry for making me feel better and you are so right....we can't have it all but thanks for the reminder. I guess I still get nervous at times about prognosis. I have another new worry which I will make a post about after I call the surgeon to set up an appointment for him to check something. Basically, I felt what I think was a rough area around the bottom of the aureola area of my cancerous breast a few times recently. I believe it might have been a bit crusty but I see no rash as you would in Paget's Breast Cancer. This poor boobie has had an interductal papilloma remove and invasive ductal carcinoma, now I am concerned it may have Paget's Breast Cancer. I will call my surgeon's office on Monday since they are closed tomorrow. Here I was looking forward to a nice relaxing Super Bowl weekend with nothing on my mind but a BEARS WIN!!!!

[Grace]

Rnaina,

Have you used Adjuvant Online to check your prognosis. It's the program my oncologist and others use to provide prognosis statistics. It's available to lay people as well. Website is:

www.adjuvantonline.com/messages.jsp (http://www.adjuvantonline.com/messages.jsp)

Yes, it's true that negative ER is not as good as positive ER but the difference, at least for me, is not great enough to worry about,and our cases are similar. For example, I am Stage 1a, Grade 2, No nodes, HER2 positive, ER/PR negative. The ten year breast cancer mortality rate for someone of my age (65) in average health, with ER negative disease is 4.8 and for the same person with ER positive disease is 2.8. The ten year prediction of dying from something other than cancer is 12.3 and if I had ER positive disease, 12.5. You can also use the site to check out relapse rates--even less of a difference between ER positive and negative.

The good news (or bad news, depending on your state of mind) is that the site does not allow for HER2 positive disease, but since ER negative is so often coincident with HER2 positive disease, it does to some extent. And it also does not take into account (and this is the really good news) the benefit from herceptin. Hopefully, it will do so soon. The site provides lots of information on how the statistics are arrived at. I find it comforting, strangely, that according to this site, my chances of dying from other causes in ten years is much greater than my chances of dying from breast cancer.

With respect to your other concern, don't forget you had 34 radiation treatments, which can and do have an adverse effect on your skin. So it may just be a reaction to the radiation and probably is. I'm still healing from my radiation treatment.

Last but not least. Every day something new comes out. Right before I read your email, I was reading an article on some work done at a cancer clinic in Florida, which in a few years should yield some positive results for making cancer treatments more effective. So enjoy tomorrow's super bowl and another ten years of super bowls, and beyond.

[KellyA]

Rinaina,


I am also ER/PR - and have worried a little bit about this myself. I may be wrong about this, so somebody please correct me if I am.

If I understand everything correctly, ER/PR - and +, at a ten year mark, have almost the same relapse rate. The difference being that ER/PR - tend to relapse a little faster (usually in the first 5 years- first 3 especially) and that ER/PR + relapses happen the same way, and can occur a little later also. This is a GENERALIZATION. I do think that it is probably always better to be +, because it gives more options.

The fact is that you are still early stage and most likely will respond very well to the treatments that you have had and may not ever deal with a relapse. Be aware also that in certain studies, involving exercise, diet (low fat), the ER/PR- people seemed the have the greatest benefit. So we are all individual, with pros and cons to our individual dx's. Thank God for Herceptin and for the fact that it has no ER/PR preference!!!!! I also LOVE reminding my hubby that my tumor was not HORMONE DRIVEN since he seems to feel that everything else I do is..... :-)

Love, Kelly

[Sheila]

Rinaina

It is normal to worry...after this diagnosis, our live if not the old normal ever again. Yes they do say the prognostics are worse for ER PR -, but vigilence is key. You were lucky to get the Herceptin being stage 1...I was not, because 5 years ago it was only available for stage IV! So here I am, almost 5 years later, and on Herceptin because I am stage IV. I would rather be a Stage 1, like I was, but to be honest, I have a great quality of life, and looking forward to the future, a long one. Medically things change rapidly....just know your body, if something seems wrong, get it checked...I hope someday to find that breast cancer is a chronic disease, yes, we have to go for treatment every 3 weeks, I would love a break, but it is my lifeline right now, so I will do it forever if need be.

[tricia keegan]

I had similar problems with a hard area on my affected breast along with itch and pain.
My Dr just dx radiation induced fibrosis,I finished rads April '05 and it seems if you have a "boost" you're more at risk.
Maybe this is what you have too?
Seems it can last a long time.
Tricia

[Sherryg683]

Shelias point is so true. Now that early stagers can have Herceptin, then that lessens the risk for reoccurance by so much. A few years ago, only late stagers could have Herceptin and that left the Stage I girls who were er/pr- a lot more vulnerable. You have had the best treatment available for you. I also had the itchy, scaly area around my aureola. My radiation oncologist said it was from the rads, it went away. Always safe to make sure though, ask your doc next time you see him or her..sherryg683

[Mary Jo]

I'm no medical professional and don't understand all this stuff possibly the correct way but my understanding is that, yes, being er/pr pos. is best and her2neu positive is not. BUT, since the herceptin era is here I think that we, her2neu positive ladies are lucky. It's such an incredible breakthrough in the breast cancer world and a cure is on the horizon. I know it.

I'm just thankful I was found early - no cancer spread anywhere else - received my chemo, herceptin and rads. and thinking I'm going to do well. Herceptin made that so God willing! One day at a time ladies - we should all live each day as if it's our last. It could be for any of us - not only cancer survivors.

It's hard not to worry about this disease but what keeps me going is putting my trust in God because I can't control my tomorrows.

Love & hugs I send,

Mary Jo

[rinaina]

A huge thank you to all of you for the information, support and for helping to put things in a better perspective for me. I haven't been really good about keeping up with outside research other than what is on here and I don't go back and do searches like I should, so I guess I lose perspective sometimes. Most of the time I don't worry and live my life fully. I keep very busy and don't have much idle time, but there are those brief moments when the mind starts to work overtime, (such as at night when you can't sleep). I am very thankful for getting this her2 cancer when I did because of all the breakthroughs. I am a lucky girl, (okay, 55 year old woman), because I am an early stager, stage I with no node involvement and that along with all your shared info has definitely given me reason to rest easier. Thank you all so much and I just love your sense of humors and support.

[Mary Jo]

Hugs to Rinaina,

I know exactly what you mean. That old "worry" gene, we all have, likes to kick in at the most inopportune doesn't it? We just all need to kick it in it's royal behind and live our lives to the absolute fullest.

God Bless & Peace,

Mary Jo

[momdeeco]

Rinaina,

I too am ER-PR-, Her 2 +++ Stage 1, Grade 3, no nodes, but had lymphatic invasion. I had to get a 3rd opinion before getting Herceptin and am so glad I did. That "worry" gene appears every day for me. It doesn't really get me down, just that I think about it way more than I should. When will the day come that we don't think about the disease? Thank goodness for this sight or I wouldn't have gone for a 3rd opinion for Herceptin. I have a great supportive family but this site and wonderful women (and men) have truly become my friend, resource, and comfort.

[ggweber_2000]

Grace, I tried accessing the website and it said I could'nt log in that I needed to be a medical person. Please Advise!

[DonnaD]

Hi Rinaina

I to am er/pr-and her2+. When I talked to my onc for the first time and was very concerned about this her thought was not to be upset because we have Herceptin and triple negatives do not. I am so thankful to be dianosed now and have Herceptin. I believe the more studies that come in on Herceptin and early stage breast cancer are really good, 50% reduction in recurrences! I too worry a lot. My motto lately "Worry less and trust God more". We can beat this girlfriend.