Is Herceptin working and the need for scans
 

Is there any testing to see if herceptin is working? I am +++ very high so from what I can see my chances of herceptin preventing a recurrence are good but ....

Also after I get through the year of herceptin how often do others have scans etc? My oncologist has just said annual mammograms and nothing else.

Thanks

Re: Is Herceptin working and the need for scans
 

Hi Gail,

I'm not an expert on this as Mum was only diagnosed in Jan, but we are in Australia too and have been wondering about the same issue.

It is standard practice here not to do any more scans aside from mammograms after treatment, unless you get symptoms that suggest a problem. We would love to have some kind of reassurance too that there is no early signs of recurrence!

I think Mum's onc did a CA15-3(?) blood test early on which if high can indicate a recurrence is more likely. I think some women get these done routinely as follow-up after treatment (to see if levels are high), but don't yet really understand this one - we are just starting to look into it now.

How are you going on the Herceptin only compared to the full cocktail?

Best wishes xo

Re: Is Herceptin working and the need for scans
 

My onc did not order scans unless I reported a symptom. You can see from my signature...I did have a few symptoms. Sometimes it is hard to distinguish an ache and pain from cancer! That part is maddening to me! The scans themselves, especially CT's have risks because of raditation.

Re: Is Herceptin working and the need for scans
 

It's tough to live with so much uncertainty, isn't it? But here in the U.S. they also don't routinely look for recurrence or metastasis. A study comparing people who were followed closely after treatment ended to those who weren't showed no benefit, in terms of overall survival, to being followed closely.

You're basically just playing the odds. To improve them, get a half hour of exercise a day, eat lots of fruits and vegetables, maintain a healthy body weight, and manage your stress.

There's a book called Anti-Cancer; A New Way of Life that might interest you. The author makes the excellent point that whether or not the lifestyle he adopted, and recommends in the book, would keep his cancer at bay forever, the changes he made gave him (and those around him) a better quality of life.

Re: Is Herceptin working and the need for scans
 

Dear Gail,

You have a good prognosis tumor! It was small with no nodes and you can have the herceptin and the anti-oestrogen treatment. All good news. Most patients with Her2+ cancers are helped by Herceptin, but there is no real way of measuring the response.

You will be seeing your surgeon intermittently and you'll be given a form for a mammogram (+/- ultrasound, depending on your breast tissue density) at about 12 months. Earlier if you have any symptoms like breast tenderness or thickening. Then annually forever.

No other scans are done to search for mets because, at your early stage, your chance of having mets are low after full treatment. The scans can be falsely positive and cause a lot of anxiety, as well as being expensive.

Your doctor may like some yearly blood tests (eg. liver function tests) and a physical exam. You can check yourself for breast or armpit lumps and see the doctor should you find one. The following list of symptoms are the ones you should go to the doctor about.

• Pain, such as chest or bone pain
• Persistent, dry cough
• Difficulty breathing
• Loss of appetite
• Persistent nausea, vomiting or weight loss
• Severe headaches
• Fever and Chills (uncommon)

Obviously, other things could cause these symptoms and your risk of recurrence is very low. After treatment it is easy to get anxious about the risk of recurrence, but you have to go on living like you are going to live forever, whilst taking care of your health in a common sense way.


Good luck


Aussie girl

Re: Is Herceptin working and the need for scans
 

8 mm, node negative, HER+. You are considered low risk for a recurrence! That being said, I do like the blood tests to track things. I think the tests are going to become more common in the near future. The push is to be able to test for issues, in the same manner as for high blood pressure and high lipids.
You caught it early. That likely saved you from future issues. Stay vigilant to changes in your body and mind, but it is unlikely that you will see the disease comeback.

Re: Is Herceptin working and the need for scans
 

I'm assuming they'll also have you on tamoxifen or the like for a number of years. In addition to catching it early, you're lucky the tumor was triple positive. You do, indeed, have a low risk of recurrence or metastasis.

Amy

Re: Is Herceptin working and the need for scans
 

Thanks RolePaul and Amy, I have a similar story .. see my signature -- stage 1, node negative, both tumors were estrogen positive, starting Arimidex (I am 57, postmenopausal, etc.) I too wish there was a blood test, but I am figuring I am still in very good shape, all things considered!

Carol Ann

Re: Is Herceptin working and the need for scans
 

I asked my Onc. about the blood test and it's only used for stage 4 patients for the reason that AussieGirl addressed. Way too many false positives. He said they are telling doctors to NOT do it. So it's sort of just hope for the best at the moment! I worry a little too because my cancer was massive but hopeful.

Best,
-Julie

Re: Is Herceptin working and the need for scans
 

Thank you all for your replies. I know how lucky I am to have caught this so early so just trying to keep on top of it as much as possible. Still in my chemo daze at the moment so good and bad days but I'll come back and read these posts when I get in those "woe is me" phases to stay positive. This forum is great and although I don't post a lot I read it regularly and it is a great help so thanks again :)

Re: Is Herceptin working and the need for scans
 

I wouldn't ever consider yourself LUCKY to have any kind of cancer and have to take chemo. I sure don't consider myself LUCKY. IT IS scary as hell and don't feel like I am not stage IV and therefore I am lucky....We all know you can go from Stage 1 to stage IV quickly or never. It all sucks!!!

Hang in there!!

I was told no scans until or if I have a symptom....Vague, huh. And I am done with treatments besides taking the tamoxifen. However, I did have an MRI last night and I did have a cyst that was 3 mm in 2007. After my last surgery my spine as really hurt, and I think surely it isn't cancer but once you know the treatment and what you have to go thru. It does not make you all happy inside it is just one more thing....Someday's are dark and cloudy, someday's are bright and sunny....Cherish the good ones and get thru the dark ones.

Re: Is Herceptin working and the need for scans
 

Thanks heaps for that post Linn. It's all about benchmarking isn't it! Compared to others I'm lucky but yeah generally this sux. Finished chemo now so feeling a lot better. Radio to get through now and then just herceptin. Day by day :)

Re: Is Herceptin working and the need for scans
 

Hi, my onc has monitored me with scans from the end of my treatment which ended in December 2006. I was in remission for 3.5 years and still receiving the scans every 6 months when my recurrence was detected. I had no other signs of illness so without the scan I feel I could have easily gone to stage IV before I had significant enough symptoms. My recurrence was local and was treated with surgery, radiation and Herceptin which I receive every three weeks for the last 5 years. I have not had another recurrence, however, I still receive a MUGA, CTscan and brain MRI every 6 months. I just don't
believe you can rely on symptoms because many times by the time symptoms are felt the progression is advanced and possibly could have been detected much earlier with a scan. Just my opinion.