4 years out, what questions to ask

turtle42

When this all started 4 years ago I was well prepared for every appointment. Had  a list of questions, took notes. Now at 4 years out I kinda feel lost at the follow up appointments. I know I still need to go and I do go. I get blood work done ( every 6 months) and a chest x-ray(1x per year). Other than that and the exam is there anything else I should be asking or doing? I am doing my self checks and I have really lumpy breasts. Over the weekend my dog was laying with me and she put her head on my chest and it was very painful so of course I checked for a lump and I found a really tiny, b-b sized, lump that is really painful. It seems at other times when I told my onc that I had a painful lump she said, " well breast cancer lumps dont hurt". So I dont even know if I should tell her. She makes me feel like a hypocondriac ( which I prolly am). Any how, what do you think?

CoolBreeze

My breast cancer lump hurt.  Any onc who tells you that is pretty ignorant.

I would bring it up and not care what anybody thought of you.  It's your health  Have a mammogram and find out.

melania

MY BC lump also hurts , even the positive lymph nodes . That how i found it out !

I am not trying to scare you but it's better to be scared than ignorant.

turtle42

Well I had the appointment yesterday and showed her the lump I am concerened about. She says she can feel it but it doesn't feel suspicious to her. She told me to check it once a month and let her know if it changes. She also noticed that I will be 5 years out next year and I asked her if anything changes at the 5 year mark. She said that since I am postmenopausal ( surgically done at 40 years old) that I could go on Femara but other than that, no change. I wanted to know if I would still be seen every 6 months or if I go just once a year but I didn't ask.

Claire_in_Seattle

How often do you get a mammogram done?  You mentioned chest x-ray, but not that.  That will tell them whether the lump is suspicious.

My follow up care is every three months for a couple of years because of the studies I am participating in, then every six months up to Year 5.  After that, annually.

Blood work for oncologist visits and annual mammogram, unless something turns up.  I don't know after that.

I also do a "rest of me" visit with Internist.  Had one at the 1 year mark, and he told me that the next one should be 2 years from now as I checked out extremely healthy.  I was thrilled.

meganhound100

Well I am apparently 4/5 years on I can't even be bothered to check how many years and I have become such a depressive.  I have no energy if I do i task that's me done for the day, my limbs ache, I have swelling in the lower leg, my hair has thinned out, BUT i drink and smoke how bad is that.

NatsFan

turtle - not to scare you but no one can tell whether a lump is cancerous or not by feel. Possibly because the lump is new she's suggesting that you wait a while, but she should have been able to explain her reasons in such a way as to make you comfortable with her decision.  

It sounds like maybe you and your oncologist are not on the same page now.  How about a second opinion from another onc?  I changed oncs about a year after my active treatment was over, as I got the feeling I was no longer "interesting" now that I was NED and not in active treatment. I just didn't seem to get the same level of concern and attention from him, and more and more of my appointment time was pawned off on a PA.  I asked friends and co-workers who'd been through cancer for recommendations, and I also asked my PCP and gyn for recommendations.  One name kept popping up - I went to her and she was wonderful.  I got my records from my old onc and have never looked back. 

tweetybird

That's something Turtle., I found out a few days before you did about my cancer. I'm at a lesser stage than you are, and I'm still getting a mamo/ultra sound, and MRI/ultra sound every 6 months. You might want to check that out. The lump that you have could be nothing, but with what we all have been thru, we're more concerned when something out of the ordinary comes up.

When I had my mamo/ultra sound done in Feburary, the mamo found nothing, but the ultrasound fond a 1/2 cm size "mass" that couldn't be felt, since it was so small. The Doctor/radiologist was going back and forth if she should do a biopsy or not, and she erred on the side of caution, and did it. I'm prone to fibrocystic breasts, and that's what it turned out to be.

I have to agree with Nat, you might want to look around for another oncologist, or if you want to stick with your current one, insist for some more tests.

Good luck with everything. I'll be thinking of you.

AnnieFletch

Please, please  have your lump checked.    Tell your doctor you want a digital mammogram.  If she refuses, find another oncologist.    She should not be telling a breast cancer survivor that a new lump is nothing to worry about.

turtle42

I have been thinking of changing oncs as the last three appointments that I had scheduled when I arrived they said that they didn't have me scheduled. Luckily I had the appointment card in my wallet and showed them. So they worked me in. But all three times I had to ask if I still needed blood work and chest x-rays and they had to go find the dr and ask and she said , oh yes, I forgot. So I still had them done but I had to ask for it. I just kinda feel like an after thought everythime now. I realize that 4 years out I'm probably not a high priority but I still feel like I am bothering them. Just kinda have as uneasy feel;ing about his. Thanks so much for all the input.

Jackie

Cowgirl13

Jackie, your onc is not doing right by you.  I totally agree with Annie==well said. 

tweetybird

Turtle,

I had the same thing happen to me the last time I saw my Rad Oncologist. I made the appointment at least 6 months ahead of time, and when I went there, I wasn't in their system. A new Doctor took over the practice. The Doctor who did my Rads left the practice. You were lucky that they took you, I had to reschedule. I'm just glad that he said told me it was nice to meet you, you're doing good, and hope not to meet you again!

But when it comes to your oncologist you have to be comfortible with them, your health is in their hands.

turtle42

Thanks for all the input. I guess what bothers me the most is that my lump didn't show up on the baseline mammo I had. Just three months later I felt a burning sensation that wouldn't go away so I went to my family doctor and that started everything. So I guess I dont have much faith in mammograms for me so what do I do? Everytime there is a new or different lump just go straight for a biopsy? Not to down play mastectomies but I wish I would have had one int h e beginning instead of the lumpectomy. Just for piece of mind. I know I caould still opt for one but the decision is alot harder now than it wold have been then.

Jackie

swimangel72

Jackie - did you ever have a breast MRI? With dense breasts this is almost standard procedure now.......mammo's don't pick up everything. Immediately after I was dx'd with a mammo, my breast surgeon ordered MRI's for both my breasts before surgery - he said he orders them for all patients before lumpectomies or mastectomies. Seems to me with your history your doctor should order you an MRI - there's no need to do a biopsy first. An MRI can be more definitive.

Sounds to me like you need to find a better oncologist - yours sounds like a loser. I'm on my third oncologist - the first one was nice, but I really disliked his nurse practitioner (she had a nasty attitude and always "forgot" things - I'd have to ask for blood work etc, much like you); my second onc had wonderful nurses (they handled all my chemo and Herceptin for a year). When the year was up, I switched because the onc himself was non-communicative........he'd literally just pat my knee and say everything's "fine".......no details........no explanations about what kind of blood work he was doing - never offered me any copies of my reports - and he kept having me return once a month - which was over-kill. I love my new oncologist - he came recommended to me by a friend who had stage 3 endometrial cancer - he's compassionate, a good communicator and follows the normal guidelines for visits and blood work. After every appointment he hands me the results of my latest blood work - and he belongs to the same medical group as all my other doctors so all my records are accessible by everyone on the same computer network. Sure makes my life a LOT easier! So even though you only have another year to go for your five-year mark, I'd recommend switching to a new oncologist - because you really need someone who cares and is using the latest standards.