Lost & confused...what happens after chemo?

jo jo
jo jo Member Posts: 1,175
edited March 2014 in Breast Cancer #1
This is my first time on this site. I was diagnosed with breast cancer (had mastectomy and lymphnodes removed) I would tell you the medical term for it but i dont remember it (chemo brain). About a month ago i finished my last chemo treatment and up to this point ive been in good spirits and very humorous through the whole thing. Ive had good doctors...very informative...Now im getting frustrated cuz since my last treatment it seems my oncologist couldnt get me out the door fast enough. He basically said take these pills for 5 years (tamoxifen) and see ya in 6 months for a follow up...i was so shocked i didnt say anything.
Im so confused isnt there tests they should be doing to see if the cancer is gone...a PET scan or something...i just dont know what i should be doing at this point (or what my oncologist should be doing at this point)
Needless to say im looking for another oncologist but in the mean time i have alot of questiions and no answers...like all the side affects im having and is it from the chemo or not.
My plastic surgeon and my physical therapist try to answer my questions and they do the best they can but they are not oncologist.
Some of my concerns besides what to expect after chemo are the side effects. I went to the eye doctor last week cuz my vision was blurry, they said it was from the chemo...i had no idea. Nobody told me what to look for or explained any of the side effects. Ive learn more through my other doctors about my cancer than through my oncologist.
Some im still looking for answers like - Im cold most of the time except when i have a hot flash...does anyone else experience this?
Also does anyone have bone pain, like if you move a certain position its like your bone feels like it could break or just very painful?
Another one is after they lower your chemo cuz its making you to sick, what does it mean when you start developing new cyst and growing hair back before chemo is finished?
I have many more questions but i dont want to overload here.

Comments

  • cavediver
    cavediver Member Posts: 607
    #2
    you are at right place
    JoJo, you will get some answers here and lots of information. I have finished 3 rounds chemo, had the mastectomy w/l.nodes removed, and facing 5 more chemo cycles........so it is not yet over for me. The vision issue started for me already, very dry eyes and blurry vision.........like you, went to eye dr and told it was chemo influenced. So many side effects are different for all of us, but you will find some guidence here at this site.
    My oncologist did tell me they would do a PET Scan toward the end of my chemo cycles... so I would think that should happen to give assurance all is well. You are on the right track to get another opinion with a 2nd onc if this one has abandoned you and your concerns at completion of chemo treatments. I will sign off now with good wishes to you...since I know so many sisters will post you with great information to help you understand post chemo life.............just know we are all happy you have completed this part of your journey and wish you well.............
  • chihai
    chihai Member Posts: 8
    #3
    I share your thoughts...
    jo jo,

    I finished my last chemo on March 4, 2010 and ad the same thoughts. Was very relieved to be done, but at the same time, I felt "lost". I felt like the doctors should do more to follow up and should offer more advice, on and on. I did request for a PET/CT scan and some bloodwork. The oncologist was reluctant to agree (don't know why), but he did and so I got my tests. They were all good. That helped me to feel better.

    It also helped me to read some of the messages that other people went through the same thing. We were all wondering "what now" after we were done with chemotherapy/radiation.

    I know you are anxious and wanting the reassurance, but please do not let it consume you. Just keep researching and posting messages. Your questions will be answered.

    Rememeber to RELAX. It's hard, I know. I'm still struggling with doubts too, but it will get easier each day. Hope this helps.
  • tgf
    tgf Member Posts: 950 Member
    #4
    chihai said:

    I share your thoughts...
    jo jo,

    I finished my last chemo on March 4, 2010 and ad the same thoughts. Was very relieved to be done, but at the same time, I felt "lost". I felt like the doctors should do more to follow up and should offer more advice, on and on. I did request for a PET/CT scan and some bloodwork. The oncologist was reluctant to agree (don't know why), but he did and so I got my tests. They were all good. That helped me to feel better.

    It also helped me to read some of the messages that other people went through the same thing. We were all wondering "what now" after we were done with chemotherapy/radiation.

    I know you are anxious and wanting the reassurance, but please do not let it consume you. Just keep researching and posting messages. Your questions will be answered.

    Rememeber to RELAX. It's hard, I know. I'm still struggling with doubts too, but it will get easier each day. Hope this helps.

    I know what you mean ...
    I understand totally. I had a lumpectomy 1/21/09 ... then chemo ... then radiation ... and herceptin until 3/10 ... then ... told I needed to take tamoxifen. I felt completely lost and abandoned. I'd had professional people "taking care of me" for over a year ... constantly monitoring my treatments and side effects ... then all of a sudden I was sent out into the world to take care of myself. I had a very tough time of it for a couple of months. I didn't feel qualified ... and wanted someone else to "keep and eye on me" ... but it was just me ... and all I needed to do was take pills.

    I will admit that it took me a couple of months to feel OK about the situation. I realize I have been "turned loose" because I am in remission ... and that's a good thing. I do see the medical oncologist, radiation oncologist and surgeon at staggered times so I really am being monitored ... but I still feel a bit insecure about my ability to notice any changes in my body. But ... it is what it is ... and I made it through the past year with flying colors and now I'm "on my own" ... and still doing well. It's just hard to adjust to not having so many people take care of me... so I do understand. As time passes you will feel more confident in yourself and your body ... and realize that you've accomplished a great deal with your treatments ... and now ... just take your pills ... and enjoy every day of your "wellness."

    hugs.
    teena
  • Skeezie
    Skeezie Member Posts: 586 Member
    #5
    tgf said:

    I know what you mean ...
    I understand totally. I had a lumpectomy 1/21/09 ... then chemo ... then radiation ... and herceptin until 3/10 ... then ... told I needed to take tamoxifen. I felt completely lost and abandoned. I'd had professional people "taking care of me" for over a year ... constantly monitoring my treatments and side effects ... then all of a sudden I was sent out into the world to take care of myself. I had a very tough time of it for a couple of months. I didn't feel qualified ... and wanted someone else to "keep and eye on me" ... but it was just me ... and all I needed to do was take pills.

    I will admit that it took me a couple of months to feel OK about the situation. I realize I have been "turned loose" because I am in remission ... and that's a good thing. I do see the medical oncologist, radiation oncologist and surgeon at staggered times so I really am being monitored ... but I still feel a bit insecure about my ability to notice any changes in my body. But ... it is what it is ... and I made it through the past year with flying colors and now I'm "on my own" ... and still doing well. It's just hard to adjust to not having so many people take care of me... so I do understand. As time passes you will feel more confident in yourself and your body ... and realize that you've accomplished a great deal with your treatments ... and now ... just take your pills ... and enjoy every day of your "wellness."

    hugs.
    teena

    Welcome JoJo,
    I would definitely seek anothe onc. I finished chemo in Dec 09, did not need rads because when I had a simple, single mastecomy in Sept, no cancer cells were found in the breast tissue and the nodes were clean from the Sentinel Node biopsy done last Aug. 09.

    First, my onc. gave me reems of phamplets and info sheets of my chemo, possible side effects, tons of drugs to take should I need them (would not have to call first). They were and are at my beck and call 24/7. I had patient orientation prior to beginning chemo with everything explained etc. I am never going to be cut loose from my onc. At first I see her every three monhts (with blood tests, various things still go haywire in my blood, like Vitamin D, Calcium etc.) and in a couple of years will drop to to 6 mo and eventually only annually, but that's for life. If I have any concerns or questions, I just call. I still have my port so go every month for a port flush.

    The protocol for me is no MRI's or Pet Scans unless there is a suspected problem. There is a website explaining all of this and I'm sure one of the girls here will give it to us, I looked it up but don't have it anymore. I still get annual mammograms on the remaining breast.

    I am Triple Neg (which means my bc is not hormone related) so I do not have to take the five year anti-hormone treatment so can't say anything about those side effects.

    After I finished chemo (I was extremely sick from chemo and they stopped them after 4 cycles) it took me several weeks to start really feeling better. I kept waiting for a feeling of elation at being finished with treatment but I never got it. Just relief. My hair is growing back and is about 1 and 1/2 inches or so, thinner on the top but coming in like crazy. had my hair colored for the first time last Friday. WhooHoo!

    I push away neg thoughts as best I can. Sometimes tho it just overwhelms me. Little things like the statemtn from BC/BS on my last chemo (came in a few days ago) and it just set me off for a little while. Like you, I kept humor and joked etc. through treatment, but it still gets me sometimes. But basically things are back to my new normal.

    You should have your onc right there by your side, answering all questions, giving info before you ask for it. I would feel totally lost if I were you. My surgeon is great but he certainly couldn't answer indepth questions about what you want to know.

    Many ladies here change onc for the same reason you are considering it. Do it. You need peace of mind and someone who cares for you. Just because we are thru with the actual treatment does not mean we are thru with bc....we still need our team. This isn't like having a case of the flu...

    Keep us posted on your new doc and what's going on. I'm sure there will be lots of good advice from others...

    Hugs, Judy :-)
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #6
    JoJo, you came to the right
    JoJo, you came to the right place and I wanted to welcome you. I finished my chemo and radiation in December 2009. I have seen my onco every 3 months since then but have not had any tests run (MRI or PET). I have my first mammo scheduled for 6/23. I had a lumpectomy and I realize you had a mastectomy. I am taking Arimidex and will for 5 years. If you have questions that need to be answered, I would recommend that you contact your onco and schedule an appointment. Don't let him/her rush you out. You have paid for their services and answering your questions and/or concerns is one of those services. You need to be your own advocate because no one else will. There are many differences with our doctors on everything from what's acceptable to what's unacceptable to do. Good luck and continue to post. There are many ladies, and a couple of men, too on this site that can provide support and knowledge. Take care.
  • Skeezie
    Skeezie Member Posts: 586 Member
    #7
    Skeezie said:

    Welcome JoJo,
    I would definitely seek anothe onc. I finished chemo in Dec 09, did not need rads because when I had a simple, single mastecomy in Sept, no cancer cells were found in the breast tissue and the nodes were clean from the Sentinel Node biopsy done last Aug. 09.

    First, my onc. gave me reems of phamplets and info sheets of my chemo, possible side effects, tons of drugs to take should I need them (would not have to call first). They were and are at my beck and call 24/7. I had patient orientation prior to beginning chemo with everything explained etc. I am never going to be cut loose from my onc. At first I see her every three monhts (with blood tests, various things still go haywire in my blood, like Vitamin D, Calcium etc.) and in a couple of years will drop to to 6 mo and eventually only annually, but that's for life. If I have any concerns or questions, I just call. I still have my port so go every month for a port flush.

    The protocol for me is no MRI's or Pet Scans unless there is a suspected problem. There is a website explaining all of this and I'm sure one of the girls here will give it to us, I looked it up but don't have it anymore. I still get annual mammograms on the remaining breast.

    I am Triple Neg (which means my bc is not hormone related) so I do not have to take the five year anti-hormone treatment so can't say anything about those side effects.

    After I finished chemo (I was extremely sick from chemo and they stopped them after 4 cycles) it took me several weeks to start really feeling better. I kept waiting for a feeling of elation at being finished with treatment but I never got it. Just relief. My hair is growing back and is about 1 and 1/2 inches or so, thinner on the top but coming in like crazy. had my hair colored for the first time last Friday. WhooHoo!

    I push away neg thoughts as best I can. Sometimes tho it just overwhelms me. Little things like the statemtn from BC/BS on my last chemo (came in a few days ago) and it just set me off for a little while. Like you, I kept humor and joked etc. through treatment, but it still gets me sometimes. But basically things are back to my new normal.

    You should have your onc right there by your side, answering all questions, giving info before you ask for it. I would feel totally lost if I were you. My surgeon is great but he certainly couldn't answer indepth questions about what you want to know.

    Many ladies here change onc for the same reason you are considering it. Do it. You need peace of mind and someone who cares for you. Just because we are thru with the actual treatment does not mean we are thru with bc....we still need our team. This isn't like having a case of the flu...

    Keep us posted on your new doc and what's going on. I'm sure there will be lots of good advice from others...

    Hugs, Judy :-)

    P.S. I forgot...
    I waited 5 months to have my eyes checked because chemo can affect the nerves in the eyes. My eye doc said my eyes were back to normal. I was aware of this problem from my patient orientation and though I didn't have any problems I still waited to make sure I would get a normal eye test. These are things your onc should have prepared you for.

    Hugs Again, Judy :-)
  • jo jo
    jo jo Member Posts: 1,175
    #8
    Thanks everyone...I feel a
    Thanks everyone...I feel a little better knowing im not the only one that is experiencing this. So does anyone have any suggestions on a good oncologist in the omaha / Council bluffs area?

Discussion Boards