Now What?

Brenda S · 08-11-2009, 07:38 AM

Friends,
I recently completed my 18th treatment of Herceptin and am now finished with all of my treatments. I saw my oncologist and he said we now just have to get on with life. I will see him every six months for two tyears then every year. Is it true that recurrance if it happens is most likely to occur in the first two years? And is this measured from when I was diagnosed or from when treatment ended. My onc was not supportive of "routine" scans, MRI, etc, other than a mamogram evry six months. Thiughts?
May you all receive peace, contentment and happiness in your endeavors.
Thanks.
Brenda

08-11-2009, 09:13 AM

If you look at the statistics on recurrence following herceptin, I believe it peaks at around 2 years and then falls off dramatically, so your doctor is correct (of course!). I know it is hard to accept that you will not be tested constantly, but the tests will not prevent recurrence (if it happens - and you will most likely not have one) and the detection at 6 months would be sufficient. Of course if you notice anything you should contact your doctor. It is hard to go from constant treatment and monitoring to nothing - a lot of patients feel anxious about it (being on their own) - but it gets easier with time.

08-11-2009, 09:27 AM

oh and I believe recurrence is measured in the herceptin tests from end of treatment, unless someone knows otherwise!

Terri B · 08-11-2009, 01:29 PM

Brenda, I'm right there with you, girl!

I just finished my last Herceptin yesterday! Woo Hoo!

Now, I'll get back to life as best I know how. Try not to worry about stuff that you have no control over. You did your very best and that's all you could have done!

Brenda_D · 08-11-2009, 03:52 PM

I was told the 2 years goes from the end of active treatment, and for us that's the end of Herceptin.
Other opinions may vary.

Laurel · 08-11-2009, 06:31 PM

Brenda,

I'm in the same boat with you having just finished Herceptin a few weeks ago. No scans for me either, just wait and see. It is a bit maddening, but I have resolved to go about the business of living. Let's toast one another in two years when we are all still NED!

Mary Jo · 08-11-2009, 07:04 PM

Well congratulations to all you ex-herceptiners (hmm

) How awesome for you.

Yep, it's time to get on with the business of living and it gets easier each and every day.

My onc. just told me at my 6 month check up that typically he stops seeing his patients at 5 years and that seeing my internist would be sufficient unless the situation changed and then I would come back. However, he did say that in my case, (this Oct. being 3 years since herceptin finished) that he would see me for 2 additional years after that.

Congrats again ladies......

Mary Jo

suzan w · 08-11-2009, 07:13 PM

After I finished my last herceptin treatment I felt like a hot air baloon that had become untethered! Joyful that it was over...but where the heck was I going? And who was in control of the ropes???!!! Well, with time I have not worried as much, and worry less and less as time goes on. My onc, too did not believe in reg scans, said she would do them if I wanted but... Seems like every year since my last date with herceptin something has happened that lands me back in the hospital...not cancer related! Appendicitis...kidney stones... osteoporosis... gee getting old is great!. Recently had a positive BRCA2 test and am going in on monday for a prophylactic oopherectomy (against my onc's opinion). I have learned that I have to take care of myself and ask for what I want!!! Good luck XO Suzan

Joan M · 08-12-2009, 08:54 AM

Brenda,

Congratulations on finishing Herceptin.

I would agree with the two-year mark for Herceptin. My feeling is that two years is a sort of mini five-year mark. That is, most women who are destined to relapse will do so in the first two years. In general, about 75% of cancers that come back do so in five years, and about 90% do so in 10 years. I believe these general figures are based on the date of surgery.

As to follow-up scans, that may vary based on a patients initial diagnosis. I had a lot of scans, but my onc said that if I had been stage 1, she would probably have done only regular blood work and tumor markers such as CA 27-29 or CA 15.3.

Joan

Westcoastgirl · 08-12-2009, 10:39 AM

My onc told me that in a study of 1000 women in Europe they found those women that were followed with all sorts of scans, etc did no better than the group with 6 mos checkups, except the quality of life was not as good as those doing the 6 mos checks. Still in active treatment I was horrified by the idea of only checking in every 6 months but as this goes on and on and on.....I will be so happy to say goodbye to the lot of them. From what I have read, if we are diligent about checking our body for signs of recurrence then we will do just fine.

08-12-2009, 11:39 AM

Thanks for the replies. There seems to be a bit of a discrepancy about when the "two year" window begins....some say at the conclusion of treatment, others say from the date of surgery. Is there anything definitive on this question?
Again, many thanks to all who responded. This site is such is a wonderful combination or knowledge, support and comfort.
Brenda

Terri B · 08-12-2009, 11:48 AM

Yeah, I sure would love to know what the timeline is based on! I had my surgery in April 2008 and I JUST finished herceptin, so I'm talking about a year and 4 month discrepancy!!

Chelee · 08-12-2009, 12:38 PM

As to the time line I've heard it both ways...but my onc told me they count it from the surgery date. In a way that makes more sense to me because that is when the cancer is removed. The chemo & rads is added insurance to get any stray cancer cells hiding out.

I was just talking to a woman yesterday at my cancer center about this very issue...she has a different onc then I do and was told the same thing I was...from date of surgery...so who knows? I hope others weigh in on.

Chelee

Ruth · 08-12-2009, 02:17 PM

Brenda ~

Congratulations!!! It is a weird feeling not going in to see the Onc. all the time. I have my yearly checkup next week and I'm sure I'll get sweaty armpits, nervous laugh and upside down stomach when I walk in.

I went on a 3 month schedule for a year, then a 6 month schedule for a couple years and now on a yearly schedule indefinitely. My sweet Onc. said for me it was the 2 year mark of surgery that he was shooting for. I haven't had any scans in a long time...he is one to go on symptoms and that has suited my personality better. I absolutely HATE scans but that's me :-).

Congrats again!!
Hugs ~ Ruth