Coping After Treatment - Summer 2013

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  • melody46
    melody46 Member Posts: 279
    edited November 2013


    Well the BS said it could be nerves, a little lymphedema, sore muscles so no real answer. I posted wrong about the pain, it did not show up until after surgery but before chemo so I attribute it to surgery. It is on the side where the lumpectomy/node stuff was. I guess theres nothing to do but wait like you said Lenn and hope it goes away. My mammogram was good though and today I have a follow up with MO. Its been one year today that the mammogram found "the lump"

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited November 2013


    Melody - I year ... What do you say? You made it through! Glad you had a clear mammogram. Yeah!!!!

  • patriciahurtado
    patriciahurtado Member Posts: 489
    edited December 2013


    hello my ladies hope everyone is doing good!!! Getting ready for the holidays?!! Well I been doing great just wanted to let you guys know that I had my hysterectomy on December 5 and was very quick and I'm recovering well... I just wanted to know if all you ladies are still seen your MO after your year has past and also my MO said no more scans since it dosent reassure recurrence... So my last scan was my first scan.... When radiation chemo and surgeries were done that was it for me... I have an appt coming up for survival meeting but that's it...my MO said less I have some type of discomfort THEN will focus on scans... But what if nothing hurts for awhile... Then what??? I had requested mammograms before I was 40 ...do to my aunts having breast cancer..then one day a found a lump... Yeah if I would of had that mammogram when I was 35 then things maybe different today.... I'm ok now but why didn't they listen then ...and now I'm scare... Well maybe i need to request pet scan every year??? Don't know what to do any advise my ladies?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    I had a colonoscopy last Tuesday. My 4th. My mother, her mother, her brother & sister, all had colon cancer so I get them every 3 years. No polyps this time. (Huge sigh of relief.)


    I get another full body bone scan on Dec. 30. to rule out mets to the left shoulder area. I've had arthritis there for years and I'm believing that's all they'll find.


    Cancer sure puts a new spin on our hopes. One would never pray to have arthritis until they already been through what we've been through.


    Blessings


    Paula

  • IamNancy
    IamNancy Member Posts: 1,158
    edited December 2013

    my mammogram last week was the first since last year when they saw the cancer..and I am happy t report all is clear...  still have doctors appointments for the next year - with the MO and the BS and even the RO...  guess that's the norm for now.

  • melody46
    melody46 Member Posts: 279
    edited December 2013

    Hi Gals,  Glad to see some new posts.  I have had scans, colonoscopy,endoscopy,blood work etc and I'm 90% convinced theres nothing going on here.  I am having a pulmonary test on the 30th and then I'm going to "leave it alone" for a while.  My next test will be a MRI in May with a follow up with MO.  Don't you feel like you got picked up by a tornado and spit out one year later? Trying to pick up the pieces and move on aint easy. Yay Nancy, Glad to hear your one year was great.  Soteria I was told by my MO that chemo unmasks joint/arthritis problems so says my shoulder too

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited December 2013


    Good to hear from everyone. I just came back from a 11 day vacation I treated myself to. I had a BS visit in November and have my first diagnostic mammogram in January followed by an MO visit. No blood work, scans but I a seeing a Naturalpathic Dr. Who does blood work. I get the results on Thursday. Should be interesting. Looking forward to hearing what he says.


    Other than that, doing ok. Hope everyone stays healthy. Enjoy the holidays!

  • erinm216
    erinm216 Member Posts: 126
    edited December 2013

    Great topic.

    I'm 156 days out from my Double MX and 4 weeks from my final exchange and am trying to get back into the swing of things.

    I saw my PS the other day and he said that I don't need to come back until Feb. and honestly I wanted to cry.  I started out hating him and now we are friends and I think I will miss him.  I feel like others when I think who is going to watch out for me now.

  • CassDugan
    CassDugan Member Posts: 100
    edited March 2014

    It's been a while - checking in to say hi and to see how everyone is doing.  I went through a rough period this past fall.  I'm finally feeling like I'm getting centered again.  All of you wonderful, strong, supportive women helped keep me sane through the madness of diagnosis, surgery, and rads.  Thank you!

  • IamNancy
    IamNancy Member Posts: 1,158
    edited March 2014

    CassDugan - glad to hear from you and that you are doing well.. its nice for all to check in once in awhile.. we all shared so much.

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    Hi Cass  and Nancy!

    Good to hear from both of you! I am with you Cass. November was the worst for me but doing great now. I am trying to exercise, eat healthy and just get on with life. Days go by and I don't even think of BC. Still wish they would come up with a cure. I sort of feel like it is there lurking in the background. My one year mark is coming up this month!

    Healthy vibes to all!

  • CassDugan
    CassDugan Member Posts: 100
    edited March 2014

    My one year mark for the Paget's dx is this month too.  For me, starting the tamoxifen was hard.  I haven't had any noticeable side effects, but just the fact of taking it every night made me think about having breast cancer every night, and I got into a whole depressive spiral.  Then, while volunteering at a hospital one day, I was talking with a breast cancer patient.  She mentioned that every time she took her tamo, she told herself it was her magical cancer-zapping pill.  It was corny, but I used her idea.  It helped, I think. 

    I'm supposed to have my first post-surgery mammogram this month.  I'm not so sure I want to go through with it.  The mammograms I had when going through the process of getting diagnosed last year were all clean, which leaves me wondering - what's the point of doing one now?  I'm thinking I might do this one and then talk with my MO about it afterward since I'm scheduled to see her later the same day.  

    Speaking of hoping for a cure, I saw recently that BCAction has planned a screening of "Seeing Red: The Truth About Pink Ribbons" along with a panel discussion at Northeastern in Boston in early April.  I've been contemplating attending.  

  • Bounce
    Bounce Member Posts: 574
    edited March 2014

    Hi CassDugan

    My cancer did not show on Mammogram either - even when they knew where to look.

    I have had bad experiences with pain during mammograms before and I told my BS and MO that I -

    WOULD NOT DO A MAMMOGRAM AGAIN!!!!!!!!!!!!!!

    To my suprise they both agreed I could do UltraSound and and MRI after my first year is up.

    Maybe you can ask for the same and get a bit hysterical if needs be.Smile

    I have never raised my voice to a doctor before my cancer diagnosis but this year I find I both want to and am able to when necessary!

     

  • CassDugan
    CassDugan Member Posts: 100
    edited March 2014

    My ultrasound was clean too.  I had an MRI that showed a mass but the core biopsy of that area was clean.  Dana Farber wanted to do an MRI guided biopsy of the area but the mass was no longer visible in the second MRI.  So, I'm skeptical about the efficacy of these tests.

    This brings me around to another topic.  Does anyone have experience with switching MO's?  I liked both my surgeon & RO.  I felt like they listened and took my concerns and questions seriously.  For instance, I'd like to call to discuss the mammogram issue before the appointment (the mammo and the follow up with the MO are on the same day, with the MO after the mammo), but I'm not comfortable doing it because I don't think she'll provide an informative answer.  I don't know what it is about the MO but I'm not exactly comfortable with her.  I don't feel like she listens, and she certainly doesn't bother to check my chart before walking into the room.  I've had several appointments with her and she still asks about my periods.  Each time, I explain that I had a hysterectomy in 2008.  It's not reassuring.  Thing is, I'm not sure how to go about finding a different one.  I'm also not sure it's worth the effort.  

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited March 2014

    Cass - it is SO worth finding a new MO!!  I switched a few months back.  I wish I would have switched sooner!  My first MO I was never totally sure of - little bed side manner.  As time wore on, she dismissed my concerns about side effects, and began telling me WRONG information about being BRCA+ ( I quickly educated myself at diagnosis, and knew instantly when she was leading me astray.). The last straw for me was when I was questioning staying on an AI due to EXTREME side effects, she told me "well, your cancer will return then and you could possibly die.  I think you need to see our psychologist to learn some coping skills."  I ran from that office and never returned.  I am still in PT from the side effects, even though months have gone by.  Ugh!  Should have listened to my gut sooner.  Ask at a support group for MOs people are happy with.  Ask your GP for another referral.  Ask anyone and everyone until you find someone!  You deserve to have an MO who knows you had a hysterectomy after saying so numerous times - what other things is he/she missing when you speak or from your file.  Good luck; I so hope you begin looking elsewhere! 

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    Cass - I have 2 MO's . I have one from Mass General - who I love and one from Dana Farber - who is great as welI. I keep both because every time I go to either one there is always something different in the approach of the two institutions. I like to hear both and then  decide. 

    I feel the same way about my surgeon that you feel about you MO- absolutely no faith and he Never answers my questions. My mo says to go and just get my breast exams from him and that is what I do. I don't ask him anything. I really don't like going to him.

    I consider my MGH doc as the one I would go to with any problems. She is very compassionate and knows where I am coming from in being very hands on.  PM me if you want either of their names. I am not sure what part of MA you are from. 

    Bayou- glad you have found a new MO. Good to hear from you!

    Bounce - I love your spirit. We have to fight for ourselves as we all know there are just so many unknowns with this stupid disease! 

  • CassDugan
    CassDugan Member Posts: 100
    edited March 2014

    PM sent, and thank you.  I'm in north central MA but I traveled to DF in Boston for rads.  Both surgeries were with a DF surgical oncologist at Brigham & Womens.  I'm not sure if my insurance would cover seeing two of them.  That's an interesting idea.

  • LiLi-RI
    LiLi-RI Member Posts: 291
    edited March 2014

    I am also at DF. I LOVE my BS, but I am done with my MO. I would love a name of a good MO. I have only met with MO three times. I actually called her office for the 1st time last week. I spoke to NP and provided her a list of current issues. The NP called me back and advised me that only symptoms related to Arimidex were the joint and trigger fingers. NP advised me to get blood work, and if normal, take a break from Arimidex for a couple of weeks (and no need to send results to MO).....I am not a needy patient, but this is cancer....

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    LIli - definitely sounds like time for a new MO!

    Cass- streamed Pink RIbbon, Inc on Netflix. WOW and to think I knew nothing about any of this stuff a year ago or anything about Breast Cancer, for that matter. Very thought provoking movie.

    How much money has been wasted with no cure in sight!! It is depressing.

  • patriciahurtado
    patriciahurtado Member Posts: 489
    edited March 2014

    I'm so tired of all these PS not finding the right one.. Fired my PS because of bad bed manners... And giving me the run around about my non TE radiated skin!!!

  • CassDugan
    CassDugan Member Posts: 100
    edited March 2014

    Patricia - what is a PS?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Cass...PS is plastic surgeon.

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    Patricia - Sorry you are having a hard time finding a good Plastic Surgeon. Good Luck with that. I would think Miami would have some good ones.

     How are you feeling otherwise?

    How are you doing Soteria?

  • CassDugan
    CassDugan Member Posts: 100
    edited March 2014

    Ah, that makes sense.  Patricia, I'm sorry you're having trouble finding a surgeon who you feel you can trust.  I realize it's probably a big issue for you, but aside from that, how are you?

    Soteria - did your skin finally heal from rads?

    Lenn - my partner surprised me by buying tickets to the BCA screening & panel discussion in Boston on 4/3.  

    As for me, I have a follow up scheduled next Friday, along with my first post-diagnosis mammo.  I plan to try to see another MO after that.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Yes, it took about a month, but it healed very well. I did find a lump in the MX area several weeks ago. I already had a check up scheduled with my MO. When she examined it, she found a second one. She got me right in for an ultra sound (within minutes). Thank God it was scar tissue.

    My hair is back, and it's curly for the first time in 60 years. I had curls when I was a toddler.

    How are all of you doing?

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited March 2014

    My hair is curly too!  It's been stick-straight all my life so this is a bit of a shock.  Ha ha!   It's been growing for a little over a year now and is almost touching my collar in back. But crazy curls sticking out all over.  Too funny.  I'm thankful to have it back, don't care what it looks like!

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    Cass- fill me in on the BCA screening afterwards. Good luck with your new MO. Pm me and let me know who you choose. 

     I have a one year visit on April 1 with my MO. Still hard to believe it was a year ago!

    My PCP 's office mailed and changed my yearly physical for April 1 as well. I am a little freaked out. Last year my physical was in the morning and I went for my call back mammo in the afternoon... Never imagined how that day would end! Thought it was just a routine call back.

    Good to hear from everybody. What are people doing to get on with life and move past this whole thing?

  • Johnetta
    Johnetta Member Posts: 56
    edited March 2014

    Anyone here EP+ but opted out of taking tamoxifen? During this past year's journey I have followed my gut on my choices and am at peace with each of them thus far. I can't help but feel taking this pill for 5 years is not worth the benefit...

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited March 2014

    Johnetta, I did agree to try the tamoxifen at my MO's insistence, but after 10 months I find the SEs are just too much. I have an appt with MO in a few weeks and I'm going to tell her I want off of it. The docs are all about quantity - how many patients are still alive after however long. But I choose quality over quantity. This stuff is interfering with my ability to do my daily work and the pain is getting worse all the time. I'd rather take my chances with the cancer than suffer like this for 4 more years.  

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    Jennie- what kind of pain do you have?

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