Feeling very frustrated

MI_Runner

Hi Ladies,

I'm hoping someone can either tell me I'm not crazy or talk me down.  I had surgery (bilateral mx) on 5/11 and saw my surgeon last week for a second follow-up.  He was very pleased with how I'm healing and said he doesn't need to see me again until December.  At that time they put in my referal to the medical oncologist - which, incidentally, they said they were doing 1 week after surgery but it got overlooked.  Someone from the oncologist's office called this morning and said they have me scheduled for an appointment on 6/24.  Now, I've learned through this whole process that this will probably be some brief meeting where the doctor will just look at me and it will probably still be several weeks before everything starts.  This puts me at least into July before chemo starts.

I have a couple problems with this:

1. I feel like I'm twiddling my thumbs here.  It's summer, I'm out of school, and that gives me TONS of time to just sit here and dwell on whether or not I've got cancer growing somewhere else because we're taking our grand old time with treatment.  I know that's not likely, I know my nodes were negative, but I also know triple negative seems to find a way to spread anyway.  It seems so pointless to me to waste this time.

2. It's summer, I'm out of school.  In September I have to start school again.  Have to - it's my income and my health insurance.  If I don't go back, I lose both of those things with no ability to get a job to replace them. I desperately wanted to start treatment as early as possible in the hopes that I could be at least mostly done by the time school started.

Now BF is texting me saying they said they usually wait 6 weeks after surgery so maybe I am overreacting but seriously??  This waiting is awful...

hrf

I had my BM on Feb. 27 and started chemo on April 16 -- so about 6 weeks. But I did see onc about 3 weeks following surgery to talk about treatment plan based on pathology. They like you to be fully healed before starting chemo. But it doesn't hurt to have everything lined up earlier - both for your peace of mind and to give you time to get everything prepared that you will need.

tibet

As long as you have chemo within 12 weeks post surgery, it is fine, no difference from immediate start. At least what I read in the research.

dlb823

MI-Runner ~  You have to be totally healed from your surgery to start chemo.  Any unhealed area will not heal while you're on chemo and also be prone to infection.  But because of your school schedule and summer off, it makes perfect sense to be ready to go as soon as you're cleared by your surgeon.  So I'm wondering if you could phone the oncologist's office and explain what you've told us about teaching, summer vacation and insurance, and see if they can work you into an earlier appointment or have you go for any pre-testing you may need before that app't.     Deanna

rinna40

I also had a frustrating wait - My surgery was Feb 23, and I didn't start chemo until June 1 because of problems healing. They would not start with open wounds becuase of increased risk of infection. I also was told that within 12 weeks was usual protical, but as you can see I was way beyond that. My OC said that the 12 week thing is just how their stats are gathered. After 12 weeks they don't have those percentage numbers they so love. He did tell me that he didn't think that a magic door closed after 12 weeks and that the chemo is no longer effective. Are you able to go back to school part time? That way maybe you could keep your insurance?

smithlme

My diagnosis was on March 28, 2007, my mastectomy was on April 9th and my chemo started on May 10. I was getting married in October and asked to have things done quickly. I took a cancellation date to have my mastectomy, just so I wouldn't have to wait longer. Explain your situation to your doctor. Sometimes they can work around your schedule...

Linda

MicheleS

I would call and ask to be worked in.  Also, you might not "click" with the 1st oncologist you see.  I would use your "healing downtime" to interview several MDs.  Really if you are healed, there's NO reason to wait to start chemo (unless YOU want to), so I'd press the issue.

carolinachick

I agree.  I would call to see if you can get on a waiting list to see the oncologist.  I was fortunate and able to start my chemo the week after my consultation with my oncologist, so hopefully you'll be able to start quickly too.  Also, my onc was able to time my chemo so that my worst days were on the weekend.  I was fairly new to my job and wanted to be able to work as much as possible.  As it turned out, I missed an average of three days of work every three weeks for doctor's appointments and not feeling well.  Hang in there!

MI_Runner

Thanks ladies.

I'm going to call back on Wednesday to see if there have been any cancellations. My mom called to get more information, and it turns out my doctor is only at this office once a week and is booked up until the 24th.  Also, my mom offered me a plane ticket home (PA) so I can visit before I start chemo, so I'll be going on 6/18 for a few days.  I don't know when I'll be able to visit them after I start chemo because my dad smokes in the house (don't even get me started...) and I don't know if I'll be able to take that for a while.  I don't know for sure if I can mentally take it now.

Carolinachick - great idea about scheduling chemo so the worst days will be over the weekend!

I'm fortunate that I won't be teaching next year - I have a research assistantship.  That will give me a little more flexiblity.

my3girls

Hi runner,

Waiting for any of this is the HARDEST part..and for that...((((runner))), I am sorry friend.

The summer does sound like the ideal time for a teacher. I do know another lady who is a teacher and had to undergo chemo during the school year.  She would set her apt. for Friday....and then she had the weekend to rest and deal with the side effects.

All the best to you!!

Lisa

my3girls

Keep in mind...the worst days for everyone tend to be different. You really won't know until after your first tx. My worst days were day's 3 and 4.

MicheleS

Mine are 3 and 4 but I tend to be loopy from the premeds and steroids on day 2.  I used to work that day but I don't anymore.  Where I get chemo, the nurses say that the people trying to continue working come in on Thurs and Fri for infusions.  Those who can take off for the entire time, come in on Mon and Tues.

MI_Runner

I had heard that day 3 was usually the worst, but can see how it would be different for each person.  At least I'll have time to get through a few treatments before school starts.

smithlme

I had chemo on Thursday and I was fine on Friday. Saturday, Sunday and Monday were my "down" times, and an occasional Tuesday. Everyone's different...

Linda

Debonthelake

The first week is the worst.  Weeks two and three I felt really good and had no problem working.  I'm glad you're schedule is flexible this fall.  That will help out a lot.  Best of luck to you.

kellyless

I had lumpectomy & dissection 1/30, met two oncologists on 2/13, port implant 3/4, chemo started 3/6.   Your oncologist should lay out your different chemo options, as well as explain any clinical trials you qualify for.  She might want to send you for additional testing (I had a CT with contrast, a bone scan, a MUGA heart scan to make sure my heart was strong enough for Adriamycin.  My CT showed a possible "something on my ovary - so I was sent for a pelvic ultra sound & it was nothing.  Bone scan showed a possible "something" on a rib - I was sent for a chest x-ray & it was nothing)   You really, really should schedule meetings with more than once ONC - as you are literally putting your life in that person's hands, and you will be spending ALOT of time with them for a while, then will continue to see them every 3 to 6 months for years - with less visits FOREVER.  Very important decision.  And as you can see, you need to get in as soon as possible so you can have time to choose a doc and a treatment plan - and get all the testing done, and possibly port placement which is minor surgery. 

I've found that pestering doctors offices can get you in (politely, but assertively)!  I've used calling several times a day to get my son into a particular specialist that said it would be 2 months for an appt - I ended up with an appt in 4 days.  

carolinachick

I had taxotere and cytoxan on Wednesdays, and was able to work Thursdays and most Fridays.  My worst days were Saturday and Sunday.  Your doctor should be able to predict fairly well when your worst days will be, depending on your drugs and dosages.  It is possible to work during chemo, and I found it nice to have a place where I had a somewhat normal routine and forgot about breast cancer for a while.  Everyone reacts differently to the drugs, though, so you'll probably just need to play it by ear.