Questions for onc at 1st follow-up?

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charmd
charmd Member Posts: 118

Hi Ladies,

Tomorrow I go for my first 3 month follow-up since finishing rads and starting Tamox.  I'm pretty freaked out because I've been having pain in my ribs and sternum as well as up around my collar bone.  I'm not thinking the worst, but I am prepared for the doc to order tests, etc.  Aside from this issue, I always blank when the doc asks if "Do you have any questions?"  and then 3 hours later I think of something, etc.  So, to my sisters who are a little further down this road, if there are any questions you could suggest that I ask at my appointment tomorrow, I would be grateful.

Thanks

Charmaine 

Comments

  • Pure
    Pure Member Posts: 1,796
    edited January 2010

    I am not there yet but I am sorry to hear of your pain. I wonder if other girls have had similar pain leftover from the rads.?

  • Pure
    Pure Member Posts: 1,796
    edited January 2010

    Ask about Zometa if you haven't had it as well as the tamoxofin metabolizing test.

  • don23
    don23 Member Posts: 512
    edited January 2010

    I would ask about the tamoxifen metabolizing test too. What helps me keep track of my questions is that I keep a notebook and write questions as I think of them. This way when the time comes I don't have to try to remember them all.

  • Beverly11
    Beverly11 Member Posts: 443
    edited January 2010

    Charmaine - Ask him what you should watch out for?  I have not had that question answered properly yet...  Ask for your vitamin D level to be tested if you haven't yet.  Good Luck.

    Hi Pure - glad to see you posting some more.  Missed you.

  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2010

    I have a "Cancer Book" (a notebook with all my cancer stuff in it) and if I think of anything during the Dr free interval I make a note.

    I always ask if there is anything else I should/could be doing.

    I would imagine the rib pain is from Rads?? Anyhow, let us know how you get on.

  • diana50
    diana50 Member Posts: 2,134
    edited January 2010

    the rib and sterum pain may just be from rads. remember, even though the rads beam is within tatoo marks; the radiation still filters through to your bones in the general area.

    questions to ask:

    1. will your onc use tumor markers? if so, which ones and within how many months apart

    2. which tests will he use every 3 months...why...and when will you switch to every 6 month appts

    3. how does your oncologist feel about scans? which ones , how often.? ie..PET (some get one 1x a year..others only when something is a concern) same with bone scan...1x ayear or only when a concern

    4. how fast can you get in for an appointment if you need to come in before next scheduled appt? how long do you wait before contacting if you are concerned about something?  the 2 week rule..or 4 week rule?

    5. Ask for the Vit D test; very important to find out your level in your body.

    6. how to coordinate with other physicans? surgeon, rads oncologist...primary care doc.

    that is all i can think of right now. hang in there

    diana50

  • charmd
    charmd Member Posts: 118
    edited January 2010

    Thanks for all the great input.  I do have a note book to take with me -- I just wasn't sure about what exactly to ask this time.  Like I didn't know about the Vitamin D, etc.  I keep telling myself that the rib pain is just from the rads -- but as you all probably know, every thing that feels out of the normal range sends a squirrly thought through my brain that something is wrong.  This actually makes me laugh, because I before my dx, I was always so stoic about being sick.  One time I actually had the flu and it turned into pneumonia, but I kept insisting to everyone that I just had a little cold.  When I finally saw the doc, he read me the riot act.  I just didn't realize how serious it was at the time.  Now, I start to freak over every little bump or pain. Go figure 

  • paml
    paml Member Posts: 81
    edited January 2010

    Hi Charmd,

    Just wanted to let you know that I had a bi-lateral, chemo, and radiation like you. This was a year ago and  I still hurt occasionally from all that torture. I do remember my ribs hurting on occasion but it turned out to be nothing. I have to take Femara now which makes me ache all over. I am not sure if Tamoxifen does the same thing. Hope this helps.

  • karen1956
    karen1956 Member Posts: 6,503
    edited January 2010

    Charmd...I have a "composition" notebook that I take to all my doctor appts....before each onc visit, I write down any meds I am taking (Rx and supplements), any side effects, aches/pains, then any info I have seen here that I may ask my onc about....my onc does blood draws before my appt, he does a phyiscal exam and gets good history at each visit...he does not do any routine scans...but will if there is a concern or I guess if I asked for it.  Since I am on AI's, I have bone density every year.  DH goes to all my appts with me and he generally asks onc general "start of the art" questions.  My last visit was right after the San Antonio BC conference in December so of course we had lots of questions about that and AI's.  I haven't had my D levels tested, but my onc said to take 1000IU/day....he also does not do Zometa, but since I am on Actonel I have not pushed, but a lot of this is because I don't want to be in the infusion room.  Good luck at your appt.  Hugs, Karen

  • karen_in_nj
    karen_in_nj Member Posts: 59
    edited January 2010

    You're ahead of me - I have that three month follow up appointment in two weeks. I always bring a list of questions because once I walk into that room my mind goes blank and without the list I'd be lost. In addition to the wonderful suggestions already given here I'm going to ask my onc what she thinks of ovarian suppression (either shots or removal). Also, I feel like I am so hyperaware of my body since diagnosis - every ache or pain sends my blood pressure through the roof - I'm going to ask her at what point does an ache or pain need checking between appointments. 

  • charmd
    charmd Member Posts: 118
    edited January 2010

    Pam, Karen, and Karen,  Thanks for the words of support and encouragement.  I'm a little nervous this morning, but it helps to know that others have experienced similar pains without it being a recurrence.   

    Hugs to all .  

    Charmaine 

  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2010

    Good luck today - I am sure all will be fine. Let us know how you get on.

  • don23
    don23 Member Posts: 512
    edited January 2010

    charmd-Good luck today. Everything will be OK! Hugs to you.

  • charmd
    charmd Member Posts: 118
    edited January 2010

    Good morning Ladies:

    Well, yesterday wasn't so good.  I spent most of the morning in doc offices.  I saw both my reg onc and my rad onc.  I have to get pet scan, but before that I need to have a biopsy done of the skin on my chest wall where I had the rads.  I still have blisters that have not healed since my last rads in Sept.  I am trying to not give in to catastrophic thinking.  However, I will admit that I'm feeling pretty discouraged at the moment.  I am suppose to have the biopsy and pet scan within the next week.  Hopefully the results will be ok.

    Thank you for your support and well wishes.

    HUGS to each of you.

    Charmaine 

  • Pure
    Pure Member Posts: 1,796
    edited January 2010

    I am sorry to hear that. I am sure there are other women who had blissters 3 months later. Why the pet scan? Did you not have one when first diagnoses? They are just being careful I am sure.

  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2010

    Oh, I am so sorry. I can totally imagine how you are feeling. Hang in there though - I am sure they are just being overly cautious.

    I hope they can get these procedures done as quickly as possible, so you don't spend too much time worrying.

    Keep us posted.

  • Let-It-Be
    Let-It-Be Member Posts: 325
    edited January 2010

    Charmaine, everyone's skin reacts differently to the rads.  Did you have 25 or 33? 

    I'll keep good b9 positive thoughts for you.  And, yes "catastrophe thinking" does nothing for you.  Sending you calm, quiet vibes!  Like Kerry says, they are crazy cautious and really this is good even though it scares the SugarHoneyIceTea out of us! 

  • NancyD
    NancyD Member Posts: 3,562
    edited January 2010

    Charmaine, I finished my rads in Ocotber 2008, and I still have a little area that peels. Not really a blister, but just an area that is a bit pink and has a peeling edge. If you have active blisters that are still developing, I can see that might be some concern for the docs.

    I had a CT/PET scan when I had finished chemo for a year in August 2009. I still see my onc every three months, and my bs every six months. My onc does bloodwork but I don't think he ever did a Vitamin D test, because I just had a bunch of tests in prep for my recon surgery at the end of the month, and my PCP told me I was D deficient. I'm now taking 2000 IU a day.

    Since I was post-menopause, I went right on an AI (Arimidex), so there was no talk of Tamoxifen or a Tamox-metabolizing test. But I just had a bone scan because I've been on Arimidex for 15 months, and they're cheching to see if there's been any degeneration. If so, I will be on something else to combat that ...Zometa, or maybe just one of the oral meds. If you've never had a bone scan, I would suggest you have a baseline one done so they can compare as you go further along in your treatment.

  • hope2
    hope2 Member Posts: 73
    edited January 2010

    Hi i just wanted to give my halfpenny worth, i also had that pain in my ribs on the left side a good few weeks after rads, they asked me if i had it all along and i said i really dont know as when my skin was fallin off me literally, blistered and red i really was not lying on that side or poking it with my fingers or anything, it is below the radiation area by a good bit and stretches until below my rib cage. The good news was it was an after effect of radiation and has nearly gone now, thank god as my right side is giving me trouble since i started chemo and avastin (think it is my gallbladder acting up, no gallstones but it is going into spasm), scanned twice and both clear.

    i also have neck and shoulder pain and this is quite common after breast surgery, the neck muscles are too tight and stretching and hot wraps are helping. i used aqueaus bp cream on the radiation area from day 1 and it cleared very quickly after finishing treatment, now you would never know i had radiation but it takes a few weeks. i had great healing before this so long may it continue. Best of luck

  • apple
    apple Member Posts: 7,799
    edited January 2010

    rib pain too.

    i still have it occasionally.  (ouch)

  • Bold
    Bold Member Posts: 692
    edited January 2010

    Hi all. I just wanted to say I had a Lumpectomy. TCH and 33 rads. I have what seems to be chronic costochondritis. Its an inflammation of the muscle that connect the breast to the rib. I too need to be checked to make sure of this self diagnosis..I so understand the fear factor. I have to constantly redirect my stinkin thinkin. I will say a prayer that it is just the healing process you are experiencing.

    I am stage 2 hope its OK to have posted here. My tumor was 3.5cm. Pretty big. I hate cancer!!!!

    In solidarity

  • weesa
    weesa Member Posts: 707
    edited January 2010

    Me, too, seven years later. The whole area, ribs, sternum etc. underneath my mastectomy and to the side are very tender. Especially have discomfort by evening and have to remove my bra and rub the area, seems to help. I was concerned a while ago and had a bone scan because I was sure it was rib mets, but my onc didn't think so. Did the bone scan to humor me. The soreness actually comes from the spaces between my ribs, and that soreness has a name which I forget.

    It's apparently very common to have this soreness which comes from rads and surgeries.

  • weesa
    weesa Member Posts: 707
    edited January 2010

    Oh, yeah, Bold was posting the same time I was--chronic costochondritis--that is what I have.

  • karen1956
    karen1956 Member Posts: 6,503
    edited January 2010

    Nancy...did you have a bone density or bone scan.....bone density is what checks for osteoporosis/bone loss....I have them annual since starting AI's.  Bone scan is what would check for mets (I think)....I had PET/CT scan at time of Dx, but none since finishing Tx.  My onc does not do any routine scans which is good for me as one less thing to worry about.  If I reach too far, my BC side hurts and it often feels irritated under the impant....I don't wear a bra....only wear cami (no shelf bra either) so there really isn't anything rubbing under the implant.  No rib pain, but chronic cough and sinus stuff....I blame it on the chemo, never thought of blaming the rads!!!! 

  • charmd
    charmd Member Posts: 118
    edited January 2010

    Hi Ladies:  Thanks again for sharing your experience, strength and hope.  I did have a pet scan when first diagnosed.  I go in this Wed. for the next one and the the biopsy at the end of the week.  My blisters are pretty large and can not seem to form a solid scab -- tmi I know.  Anyways, I too do not wear a bra -- only cami's w/no shelf, and I do notice that the pain seems to increase more after exertion or by the end of the evening. I really hate that any person has to go through all the bs.  I just want to feel like I'm not falling apart anymore -- physically, mentally and emotionally.  

    Thanks again for all your support.  This has been a pretty rough couple of weeks with very little support on the home front.  I am catching the "aren't you done with this yet attitude?" from dh.  Your encouragement and advice has been a life line.  

    Hugs.

    Charmaine 

  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2010

    Charmaine - I have been thinking about you all week. Glad to hear you are getting things rolling next week. Once your PET shows up clear so you can have some peace of mind.

    I am so sorry you are having to deal with this so soon after finishing treatment - you'd think you would get some time just to regroup a bit! Anyhow, just try and distract yourself any way you can until you know something.

  • Fidelia
    Fidelia Member Posts: 397
    edited January 2010

    Charmd - sadly no such thing as tmi here. Please let us know how you go - has anyone told you how much radiation you had? The blistering really sounds like a very bad burn - sometimes everyone is so busy looking for cancer they miss the obvious - radiation burns are serious and everyone's skin density and tolerance is unique - I know they know what they are doing - but sometimes you just gotta double check.

    Fidelia

  • hope2
    hope2 Member Posts: 73
    edited January 2010

    charmd,

    i am sorry to hear that you are not getting the support you need, my dh is the opposite, i am trying to get back to normal and he thinks even my sinus infection is somthing to be checked out. i have to answer the same questions every day, any new lumps and bumps etc, swear to god, then i have to promise that i have told him everything at every visit. i know he is worried but sometimes i think they can do no right, if he did'nt ask i would think he does not care and when he does it wrecks my head.

    fingers crossed that everything you are worried about will be resolved for the better soon and you will get the all clear.

  • NancyD
    NancyD Member Posts: 3,562
    edited January 2010

    Karen, the recent scan was a bone density scan. I've had a few since starting menopause nine years ago, but this was the first since starting Arimidex. I feel it will show some further degeneration from the Arimidex than was already noted at the last one two years ago (pre bc) that was attributed to arthritis. We'll see what my onc has to say about it next month.

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