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Ginger
01-30-2005, 12:41 PM
I am new to this site and wondered if most of the postings are from those with recurrent or advanced stage BC or all types. I had a lumpectomy and sentinel node biopsy Aug 2003 with negative nodes. Tumor size was 2.5-2.7 CM which puts me in Stage IIA. As followup I am not getting any tests other than a CBC...Blood cell - nothing else. SHould I be doing something else to track this disease? My new gyn said i was "Cured" and i'm hardly that optimistic. I was HER2 positive (will check to see if FISH was done) so had the AC Chemo 4 rounds followed by 6 weeks of Mon-Fri radiation. I am on Tamox and will probably switch to Arimidex soon. Is Arimidex recommended for HER2 positive women? ALso, must one get into a clinical trial to get Herceptin without being Advanced Stage and is this even possible. Thank you anyone for any information.

Sandy H.
01-30-2005, 01:56 PM
Ginger welcome to this board. You came to a great place and will find this a very caring and compassionate board. Many on this board do research are pro active in their care as well as willing to help others with qestions. I would say you are doing well. No one knows if you are cured! You are on Tomox and that is good. You had neg. nodes which is a plus. Even though you are Her2 doesn't mean you will recurr. As for the Herceptin the latest I have been told by an oncologist is that it only works for 30% of the people that take it and that is mostly stage 4. I was told that it does not prevent the cancer from going to the organs and bone. That surprised me. It can be very toxic to the heart and if that happens when it is being given for those that are not stage 4 then it may mean that it can not be used when it is really needed. You will get lots of responses from others saying this may not be true. Many doctors do not like to give it until a patient recurrs. Do your research and then go with what you are comfortable with. It may mean getting second and even 3 or 4 opinions. Treatments are changing these days and what is being done today may change next month as new data keeps coming out. I wish you luck in your journey. Thanks for posting. Hugs, Sandy

Ginger
01-30-2005, 02:19 PM
Thanks Sandy - that was very helpful. Good luck to you also.

I came back on to add that I've also been thinking of getting a PET scan - my gyn said he would prescribe one if I wanted it done. Is it worth getting?....in reading susanlovemd's site it sounds like it usually is not - that it is more useful with metastatic disease due to the false positives one can get from a PET scan. sounds like by the time something shows up it may be too late (in the skeletal system etc.) to do much about it.....the reason i'm concerned is have been feeling sensitive in my rib area and not sure if its arthritis or cancer......not a lot of pain but something i've never felt before and is not going away. The answer may be that I am afraid to find out....

Guest
01-30-2005, 03:21 PM
Ginger, glad to hear you are getting a PET scan. I was going to ask you about scans. Before PET scans were routine I was given a whole body CT scan and CT scan of my head in addition to a bone scan.
What kind of breast cancer did you have?
I was dx'd with 3 different types of aggressive breast cancer (9 mos. after a supposed normal mammogram). I had noticed a hardened area in the upper inner quadrant of my breast--almost above breast on the chest within a day or so after the mammogram. I thought perhaps it was a bruise or tissue damage from the compression of the mammogram. My dr. wasn't concerned since the mammogram report had been normal. 9 mos. later I developed pain in that breast. 10 days later my nipple began to change--daily. The surgeon biopsied (core biopsy) that same hardened area that was about 4 inches away from the nipple. The biopsy showed a 2.5 cm stage II lobular breast cancer. Because lobular is type to more likely recur on the other side and because I have a very bad family history of breast cancer, I opted for a bilateral mastectomy which was done 23 days after the biopsy. The type of lobular I had was also rare---pleomorphic invasive lobular--which is a very aggressive variant with relatively short relapse-free survival time. Although the surgeon did get clear margins around the main tumor, it turned out that I had 2 other types of cancer going on--high grade dcis with extensive comedo necrosis and also a rare presentation of inflammatory breast cancer. However, I ALSO had positive nodes (9 of 12).
As far as treatment I had 4 AC followed by 5 weeks of radiation, then 4 taxanes and a year of Herceptin. My situation WAS different from yours.
In your situation--your sentinel node was negative--very good sign.

StephN
01-30-2005, 05:06 PM
Ginger -
If you are experiencing pain in your rib area - you may need to look at having a BONE SCAN. This is what my med onc ordered for me when I had a new and bothering pain that could be suspicious (meaning I did not recall any injury or overuse to account for that new pain).
My scan was thankfully neg.

I reserve PET scans for other purposes as I am Stage IV, but have been clear of active disease and maintained on Herceptin. A CT or bone scan is the best way to avoid the false postitives.
Hope your pain will turn out to be just a "mystery" like mine was and go away with a little time and peace of mind after a good test.

madubois63
01-30-2005, 09:46 PM
I get a CAT, PET and bone scan. The CAT picked up my mets to my lung which started as a cough and a pain in the rib area. My lungs were filling up and the pressure was pushing on everything else. Of course everybody is different and pain does not always mean mets, but it should be checked out immediately. We need to check everything out from here on in! Good luck, God bless and keep us informed.

Kristen
01-30-2005, 10:58 PM
Ginger,
I would be really interested in seein which way you go on this in getting your rib pain checked. I have had sternum and rib since last Sept. They did a bone scan neg, yeah. I had my reconstuctive surgery in Dec. It's wierd, I still have the pain on the skin that was left from the mast. but the new mound has nothing. I started having some wrinkling and a bruise, like bump on my rib showed up right before that. I saw my breast surgeon as a follow up just this month, and she said if the pain gets worse she would like to do an MRI of the chest. since I was done with treatment with Herceptin in Dec, I had my yearly chest x-ray and nothing showed. Now with the post of surgery, I am a little worried. I see my onc an neurologist in March and will see what they say. Please let me know what you find out. Take care k

rosie
01-31-2005, 12:05 AM
Welcome Ginger though I am sorry you have to be here. You are wise to ask questions.

I have heard if you are her 2 positive ( 3 plus or FISH pos ) then femara is a better choice than arimidex or tamoxifen. I have also heard that while a negative bone scan is terrific, sometimes early on it can be falsely negative. So if you were to have a bone scan and continue to have pain, having a PEt is reasonable.

All these things said, what's most important is that your sentinel node was negative. That's great!

If you are still feeling nervous, a second opinion with a breast oncologist is always reasonable.

Good luck!

Patty D
01-31-2005, 11:04 AM
Sandy I am surprised to hear herceptin doe not prevent the cancer from going to organs and bone. What is the point of it then?? I know it does not prevent brain mets but I cant belive it doesnt help other areas. I was dx in Jan 2003 with mets to my lungs after 9 yrs of being cancer free- Was dx as stage IV - treated sucessfully with taxotere adn herceptin- I have continued on the herceptin (being monitered for heart function -all ok so far) I was just dx a couple months ago (thru a pet scan) with bone mets and am receiving faslodex (monthly inj). In 2 months I will have my markers rechecked to see if it works- if not then I go to chemo.
Herceptin has been my "hope for a long time qand I was dissapointed to get the bone mets , but I am still on the herceptin. Just spouting off here-please excuse---I have had a frustraqting week.
God Bless you and all the gals here. You have benn wonderful! Patty d

*_jeff_*
01-31-2005, 12:56 PM
Just wanted to throw in my two cents on this...

For women who have her2 positive disease but no positive nodes, there is some strong evidence that their prognosis is more or less the same as women with her2 negative.

Once there are positive nodes this changes and her2 does become a "poor" prognostic marker.

But there is loads of evidence that herceptin, which is being tested in a number of international clinical trials--some of which will finish this year, it looks like--will in fact have a major use in the adjuvant setting (i.e. as first treatment for breast cancer where there is no evidence of metastatic disease). I've been amazed in the past couple of months to see how many "research leaders" are now willing to bet that the adjuvant herceptin trials will be positive, when just a few months before that they were all staying mum. I guess they really wanted to make sure not to mess with the continuing enrollment in clinical trials.

As for cardiac issues, the latest numbers I've seen suggest that 3.5 percent of women who use herceptin may develop some heart problems and it's virtually all reversible and virtually all can continue on herceptin after the cardiac issues are addressed.

Best to all,
Jeff

Ginger
01-31-2005, 07:16 PM
Thanx everyone. My Dx was invasive ductal Grade II/III. I'm new at this so i'm tryin to answer everyone at one time. Today didn't feel anything in the rib this morning...so pain may be gone .... I also had pain in the sternum area when I was first diagnosed back in JUL 2003. It was pretty scary. Haven't had it since my surgery/treatment except for a teeny bit lately. I had a bone scan then (July 2003) which was neg. I've been told it may have been Costochondritis (inflam of where ribs join the sternum...form of arthritis) and stress. My arthritis Dr. keeps asking about the bone scan I had. but doesn't suggest another one. I think I need a 2nd opinion from another oncologist. The one I have doesn't seem to think I ever have any symptioms or any need to get any tests whatsoever. ALtho the rib stuff started after the last time I saw him I've mentioned my back pain and he seems to think if worse when I first get up in morning probably arthritis. And no need for tests. So, my gyn who i've only been to twice in my life (after my cancer) is the only one right now who is willing to order any tests for me. I'm still a little confused as to which would be better....PET, CT or bone scan. He seems to think PET. Anyway, I know I should do something soon....and then I put it off again today. Thanks again and all the best to everyone. Will let you know what happens.

Lyn
02-02-2005, 02:33 AM
Hi Ginger, don't let the threat of heart problems scare you, I had heart failure from thyroid treatment and my left ventricle was fine so I had no need to stop herceptin, and that was Oct 2003 and I still have treatment for chronic heart failure and today I had echo and all looking good and stronger than before. Every chemo drug treatment has its' possible serious side effects scenerio, Herceptin I believe is recommended for agressive BC and that was what I had in 1998 and I have lost a few lady friends along the way who didn't have a serious diagnosis, so I think this disease is so unpredictable you have to stay on top of it, but not obsessive like me. I had a life expectency of 2 to 3 years in 1998, so I figure I am still around because I must fit into the bigger scheme of things. I was told that aromatese inhibitors are used when Tamoxefin stops working. I am not hormone responsive but Aromasin got rid of some lumps in my neck before I got to have my radiation on them, but then I still have had relapses along the way and have changed back to chemo, it seems it is all hit an miss with us, we have to try everything.

Love & Hugs Lyn

Ginger
02-02-2005, 06:30 PM
Lyn and all, how do you get Herceptin - if not dx with Advanced stage yet do you have to get onto a clinical trial to get it?

Lolly
02-03-2005, 09:44 PM
Ginger, some of the early stage gals have found doctors who are willing to give them Herceptin "off protocol" which means that even though it's only approved by the FDA for advanced stage, it IS an approved drug and any doctor can prescribe it if he/she feels it's medically necessary. The trick is convincing the insurance company to cover the expense, and a good argument can be made for HER2+ being more aggressive and therefore needing extra measures to ward off recurrence. Any oncologist worth her/his salt should be able to make the necessary arguments to get it covered; you may have to "shop around" to find one willing to take it on, but it has been done. Try posting your question again on the current page, ask if anyone knows an onc in your area if you don't think your current onc is going to help you.

Love, Lolly

ginger
02-07-2005, 03:37 AM
Thanks Lolly - I had thought of doing that - but now I will.

All the best to you.