Finished Chemo-Now What?

dhettish

Finished Chemo-Now What?

dhettish

Hi Ladies,

I finished chemo on 3/11/08. My onc was sick with the flu so I did not get to talk to her.

I know there are no more drugs for me take. What is the protocol with your experience? Do they do a PET Scan. Does PET Scan catch mets in the bone or is a bone scan necessary as well. What about blood tests? I want to know the cancer is gone, but how do I find out? I don't go back to my onc until 4/8/08.

How do you get over the fear of "what if the cancer comes back"? What are the symptoms of Liver vs brain vs bone mets?

So many questions. With chemo, I felt like I was waging war against my cancer but it seems like the war is over and I am not sure who won?

Any insight will be helpful.

Thanks...Debbie 

lisa49

 i do not know what comes next. just wanted to say congrats on finishing chemo take a second and enjoy that!!!!

good thoughts

 lisa

twink

Congratulations Debbie!  The double edged sword of being triple negative.. You're done treatment -- Yay!  You're done treatment --  Now what! 

The ASCO guidelines don't recommend scans (you can google ASCO Breast Cancer follow up guidelines), just regular appointments, workups and scans when you're concerned about specific symptoms.  My onc wants to see me every 3-4 months, will do CBC at each appointment and PET/CT annually.  My BS wants a breast MRI annually.  Neither doc is following the guidelines but I told them I want to be a little more proactive and they're cooperative (even if they don't really think it'll make a difference).

Good luck and, again, congratulations on being done with Chemo.  It'll take awhile to settle into the non-BC patient mode... I'm still working on it (finished chemo 10/07 and rads 1/08).

dhettish

I did not have rads. I had a double mast and only 1/23 lymphs involved. I was told no mammo's just CXR's. Is this right? Or should I be asking for breast MRI?

Debbie 

tos

Hi Debbie, well there isn't much more to do other than check-ups and bloodwork which I get every 3 months.  After awhile it moves to 6 months.  My Onc doesn't do scans unless I would present with a problem.  Get to know your body well, if a new "something" is bothering you they say give it the 2 week rule and if it is still there then call for a visit with the Onc.

Some say they have symptoms before c comes back and others don't so just be vigilant.

HeatherBLocklear

Congratulations on having finished chemo. What a wonderful feeling that must be! Now your hair will come back, your energy too, and you can go on to the rest of your life!

Like the other women above, I also say to keep a close eye and ear on yourself. Anything that seems out of the ordinary, and off to the doc you scoot. But who says anything will go wrong? I'll bet you live to be 108 and not a tooth left in your head.

Hugs,

Camel Annie

CarolC

Hi all,

What a great topic. I am sitting in the chemo suite as I type having my last tx. I was told the same thing - a followup in 3 months. Actually first he said 4 months and I blanched so my onco said "ok, we'll make it 3". I was wondering what to do and look for too.

You're all right - I need to celebrate that this is done and I just might have hair again soon.

Thanks for being here.

suz41

I'm so glad I stumbled on this page today.  I have my last chemo on Monday (3/24) and was told no scans either.  It kind of bothered me because I want somebody to tell me I am "cancer-free".  I was told blood work every 3 months also.  I will still be doing herceptin every three weeks but no chemo which I am so happy about!!  I want my hair back and I want to feel normal again.  Does anybody know the average time it takes to see enough growth to stop wearing my wig?  I am so sick of it!!  Suze 

Shirlann

Hi sisters I was/am a triple neg and I had no tests at all after treatment ended.  Of course, here in California, we are all in HMO's and they don't do anything but a free referral to dr. Kevorkian.

Just kidding, but a lot of onc's don't like the tumor marker test because of too many false positives.  Sure nothing wrong with getting an MRI, but no way any of us out here will get one.  I had a bone scan when my ribs hurt so bad, but that was costochondritis.

Dr. Susan Love says do your best to stay away from too much watching.  Either it will come back or it won't.  This suits some people's personalities, but certainly not all of us.  So you need to push for what you are comfortable with.

Her point was to get back to your normal life as soon as you can, without the appointments, testing, etc., that so disrupts your life.  She feels that if you have a recurrence, you will find it, if you have mets, what difference does it make?  But believe me, that is a matter of your own feelings.

Gentle hugs, Shirlann

dhettish

Thanks everybody. I guess I thought since I was TN I would get more stuff done but.......

Suze....as for the hair, when I had chemo 21 years ago, it was 7 months before I got my first haircut. About 4-5 months, I went w/o a wig. Just very short hair. My hair is coming in as white fuzz now. I fear I may be gray! I have not know my real color since about 1990.

As for the TN....I posted this link on another thread but I think it does have some good news for us so I am posting it again.

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20070801/triple_negative_070801/20070801?hub=Health

Debbie 

Mimsi

I finished my chemo (TC dense dose) on January 18, 2008. My onc saw me after 1 month and now will see me every 3 months for the first year then six months, etc.  She does not do scans as a rule. She relies on bloodwork, physical exams and symptoms. At my first 3 month I will have a CAT scan because the last one before chemo showed a dark area at the top of my liver/bottom of my lung. It was seen on prior xrays at the same hospital and had not grown. My onc wants to make certain that it has not grown now. If not, I probably won't have any further scans unless symptomatic.

I too am in the "what next" mode, but am claiming to myself that I am healed.

Laura-Vic

This is timing ... I finished my last chemo on February 28 and had my last appointment with my oncologist today (March 26). I am also triple negative and like you all - kinda feel like I am falling into the black hole of no more "watching".



I do still have radiation to go - start on March 31 - 30 treatments. So, technically, still have things to do and visits to the Cancer Agency.



My oncologist basically says - you're done. You can consider yourself NED at this point. I will have follow-up visits with my GP every 6 months for the next 5 years just to check in on my overall health. Only if I have something of concern does she want me checking on it sooner. Again - I too have been told the 2 week rule - if hip hurts, or something is out of the norm for 2 weeks - call and have it checked. Other than that, she says - don't worry, go on and live your life. None of us has any guarantees and we are just more fortunate that our "stop and smell the roses" saying has been brought to the forefront and we might actually pay more attention to those things.



So ... I am going to consider myself NED-light for the next 5 years and just get on with it. She too told me that early on, people used to do scans and such but that for most BC patients it was more stressful to keep the waiting game between appointments and "wondering" when the next brick will fall. So now, unless there is something going wrong, or symptoms appear ... live your life !!



Let's all look forward to a toast in 2020 ... I plan to be here for that ...



Laura in Victoria

Mimsi

To Debbie in TN... My hair started growing back while I was taking chemo. I finished chemo on 1-18-08 and my hair started falling out again the first week in March. Now all my eyebrows have fallen out and I have about 4 of my extra long lashes on each eye. I look really strange!! I thought I had escaped the eyebrows and lashes falling out. No such luck. I also have developed white arched rings from the  base of my nails that are growing with the nail growth. I guess these are delayed side effects of the Taxatere or the Cytoxan that I took.

FloridaLady

Your scans are done by your original dx and response to treatment.

If you had node involvement over a certain number, you are more likely to have scans done more often. If I had node involvement I would push for scans!  We just had a lady pass that was TN and had 7 nodes+ and never had blood work or scans in a year.  When she went in it was in bone, liver and lung in one year. She had a mast & ACT originally.  Could they have found it in one place before it spread to all three? 

My clinic scans first year every 3 mths and 2nd year every 6 mths if you were node positive or had large tumor at the time of dx.  I think it is worth the cost of the scan for the piece of mind we get.

Living in Hope,

Flalady (I have a HMO also)