Finished treatment, now what?

suebak

Finished rads, had my f/u with mo, now I don't go back until March for a mamo. I had no pet scan, no bone scan, no bloodwork, nothing.  I am just not comfortable with this. Shouldn't they be checking for tumor markers or something?  Looking for some advice.

 Thanks ladies

 Sue

starbeauty

This is pretty standard for your stage. They don't do scans unless you have symptoms. TMs are considered unreliable by many oncs. they also will tell you that routine scans won't improve your overall survival. What you can do is space out your mammo, rad onc, onc, pcp, breast surgeon visits so someone is looking at you and talking to you every 3 months for the first year or two. If you are on tam.. You also want to monitor your uterus with pelvic us. You can also ask for abdominal us just to get a baseline and track liver etc. Onc will do lab work every visit... You can have the pcp monitor the same lab work on those visits. Make sense?

elimar86861

How 'bout Enjoy the Holidays! 

peggy_j

I agree with starbeauty about staggering the follow up with the different docs.  (I will also be getting a mammo + MRI each yr and will stagger them every 6 months)  My follow up with my BS was about 2 months after Tx. Did you MO put you on meds? Post-rads I had a meeting to discuss the meds, then a 1-month follow up and then three-month follow ups for the first year or more. All my cancer docs do breast exams each visit. FWIW, I avoided all support groups during Tx but found myself full of anxiety a few months post-Tx. I went to a "recovery" support group and found it helpful to touch bases with women in the same boat.

Reality

Hello to all - I still have 6 wks. of rads to complete, but was already concerned about not being seen by someone for 3 months!  You would think that I would be so sick of going to appointments, but the thought of not having any for awhile is scary. I was actually relieved when the tumor board of my hospital invited me to join a research study after rads. I will be closely monitored for two years. Even though it means a 20 min. ferry ride and 2 hour drive to the hospital, one way, I am still relieved that I will be recieving attention. I will be taking cytoxan and rheumatix, plus aspirin, orally for 16 wks. following rads, as part of the research study. Similar studies have shown that the oral chemo has no significant impact on recurrence rates, but I have to try anyway. I had pre-surgery chemo and only responded moderately - that why I was invited to join the study - scary, but here I go....

Sher 

Anonymous

"Finished treatment, now what?"  ~  I like elimar's advice  ~ I had my BMX the Tuesday after Thanksgiving last year...Christmas was a blur.   I plan to soak up and enjoy every stinkin' minute of the holidays this year. 

Reality

Susansgarden - sounds like a great plan. The holidays were also a blur to me last year - I opted out of almost every gathering I was invited to. I was dx until May, but was so ill last winter and had no idea what was wrong with me. Let's go for it and enjoy every minute.

Sher 

Reality

....meant to type: "was not dx'd until May"

Sher 

mdg

I feel the same way...it's hard to just "be" after all of this.  The things I am doing are continuing to take tamoxifen and changing my diet and healthcare products to healthier things.  That makes me feel like I am doing something.  I see my med onc every 3-4 mo's for now with no blood draws or scans either. 

elimar86861

suebak & mdg,  I write specifically to you both because I have almost the same Dx.  With no node involvement (and I assume your final path. had no LVI observed,) there is not really much to do except take the Tamox. and hope you don't get the hot flashes from Hell and put on 30lbs..

When I finished rads, I was to see the BS every 6 mos. and the RO every 6 mos. (staggered); and the MO saw me every 3 mos., now it's 6 mos.  The MO does draw blood, for CBC and CMP (metabolic profile/liver function.)  Also saw the GYN somewhere in there and he gave the breast exam at that visit.   (Plus, I had 6 mos. mammo checks too.)  That was just TMD (too many doctors) for me.

After one f/u with the RO, I told him I would not be back unless I had some problem with breast or lung area.  After about a year and a half, I told the BS I'd see him if I needed more surgery.  So now, two years out, I will only see the MO 2 times a year, GYN once incl. CBE, and I'm going to just one mammo f/u a year.  That suits me fine.

Some people do get treatment-stoppage anxiety, like they want to feel they are still fighting it.  Well, your Tamox.will be for five long years.  But if you feel you are not doing enough here are some tips:

Do the SBE every month.  Get to know your new scar tissue lumps, so you can tell the difference if there is ever something that feels new and like it does not belong there.

Get a DEXA (bone density) scan.  It does not hurt to have a baseline scan done at the beginning of your Tamox. usage., even more so if you plan on switching to an AI at some point.  Good to monitor how your bones are doing.   If you are close to menopause, taking a calcium supplement is usually a good idea.  (Total 600 mg. twice a day.  Take 1 250 mg. magnesium tab with that, as they work synergistically.)

Get MO or PCP to order the 25-Hydroxy-D test to check your Vit. D levels.  Many women with B/C have low Vit. D levels.  If yours are low, you can easily buy some D3 supplements.  Vit. D helps with the absorption of calcium too.

Get to and/or maintain a healthy weight.  Harder than before on Tamox.

If you like the booze, cut way back.

Finally, get even more vigilant once you pass your five year mark.  Women with slow-growing cancers have a continuing danger of recurrence 8-10 years out and even longer.  By then, we are done with the hormonals and something slow growing could still show up.  So don't put too much worry into the first five years, we usually get through those pretty easily.  Save some worry for the long term.  Sorry, but it's reality.

Those are some basics.  I'm sure you can find lots more.  If you tend toward the natural treatments, you can keep as busy as you want with that stringent diet and lifestyle. 

There.  Hope I have made up for my first short answer, which still applies.

p.s.  Usually, unless you have metastatic cancer (or maybe Grade 3 agressive,) your MO won't bother with TMs.

p.p.s.  Oh, and if having a bone scan really means that much to you, try mentioning the words "bone" and "pain" in the same sentence to your MO.  He'll be writing the order quicker than you can jump off the exam table.  Seriously. 

juli0212

I was also told that being stage 1 with no node involvement, there's not alot of tests/followups.  I know I am Stage 2, so that differs. I am 5 years out and still have yearly bone scans, CT scans (next week), bloodwork every 3 months, but again, my tumor was against the chest wall, didn't have clear margins first surgery (I have a partial mastectomy now after 2 lumpectomies) and did have sentinal node disease.  Had the chemo/rads/tamoxifen-now aromasin, and oncologist says the aromasin will be for 7 years or so.  Depends on dx and protocols?  

I always say if you are NOT comfortable though with your treatments/follow-ups, to definitely talk about it with your oncologist....if you're still not comfortable, you can get another opinion.  The more opinions on AFTER treatments are also life-saving decisions you need to make.  BEST to you!  

Happy Howl-O-Ween everyone...may it not snow!   :O     ~juli  (yep, snow predicted for today)