Coping After Treatment - Summer 2013

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

    Joint pain.  Mostly shoulders, elbows, hips, knees.  Making life difficult.  :-(

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  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    Jennie- have you had it the entire time you have been on Tamoxifen? That is a bummer. Keep us posted what your MO says. Good luck with that.

    I have a pain in my spine that I am wondering is caused by Tam. I have had it a few months. ice/heat/ aleve does nothing. Will talk to my MO about it the week after next. 

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  • CassDugan
    CassDugan Member Posts: 100
    edited March 2014

    I don't think I've experienced pain as an SE with Tamo, though it's tough to say.  I do have a few areas of chronic pain, related to osteoarthritis, but it's difficult to judge whether they are worse or not.  What I can say is that my shoulder, axilla, and breast on the treatment side all have chronic pain now and did not before surgery & rads.  But, I would guess that's due to surgery and rads rather than the Tamo.

    I was at Dana Farber today for a follow-up with my MO and my first mammo since beginning the journey of diagnosis & treatment.  Mammos didn't much bother me before this, but wow did it ever hurt on the surgical side.  I was nervous because I had to go back in for 2nd images, including a spot exam on the right.  However, the radiologist judged my images clear just in time for me to get up to my MO appointment on time.  The MO was about the best she's been.  I think I'll still look for another.  It was nice to feel that my questions were answered today, but that's not been my past experience with her.  

    Unfortunately, the lymphedema study in which I was a participant is defunct due to lost funding.  I am concerned that I might be experiencing some, and so was especially disappointed not to be measured for the study today.  I notice that when I wear a bra, which is only when exercising because it's still not comfortable, that the seams leave deep impressions on the surgical side.  I've been feeling some tingly pains in my left arm and hand too.  The MO said that there's not much that can be done if it's just the breast but failed to address my concerns about how do we know if I have LE.  I'm doing my senior project (a review of literature) on lymphedema (though I haven't quite settled on an answerable question yet), and have recently been learning a lot about treatments and the benefits to catching it early.

    I can't believe I forgot to ask about an MRI.  Good news was, mammo was clean, no detectable lumps.  Bad news is that was the case before treatment too, and yet DCIS and IDC were found underlying the Paget's.  The MRI was the only imaging that found anything prior to surgery.  It's reassuring that today's mammo was clean, but only somewhat.  After all, it was clean a year ago too, and that turned out not to be the case.

    I'm also wondering - my MO said that some women find that, after rads, their breast becomes smaller and firmer and others find that it increases size.  Mine has gone from smaller to now bigger.  Has anyone else experienced this?  

    On the way home we stopped at an animal shelter to visit with the animals.  We petted the cats, walked a dog, and visited with some hamsters.  One little orange tabby boy would have charmed his way into my life if I didn't already have 3 cats and a dog.  It was a very nice and smiley break during an otherwise long day.

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  • melody46
    melody46 Member Posts: 279
    edited March 2014

    I have had all kinds of issues with joint pain since starting tamoxifen and also just recently started having pain/tenderness in the breast I had lumpectomy in.  Dr sent me in for ultrasound and breast center radiologist said its very common to have pain in the breast for some time after surgery etc.  Going in for a cortisone injection for right shoulder which has been killing me since last Sept. :(

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  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    Cass - glad your appointments went OK today.

    I had my PCP refer me to a great LE therapist. I ended up spending 3 months with her. I had Stage I lymphodema which neither my RO or MO picked up on. Numbness and swelling (plus cords) were the symptoms. The bra area was always swollen.

    She was with Spaulding. It was great as she really helped me get through the physical part of my job . She also taught me so much about the lymph system, compression and moving lymph fluid. Like you, my radiated breast is bigger. The pain in that area has really gotten better with all the Yoga I have been doing this winter. 

    I am starting to freak  about the new pain on my spine. It is now pretty bad and I am having to use pain meds left over from my surgery last year. I have eased up on exercise and will see if rest helps it. Trying to make it to my scheduled visit on April 1 , but won't if this amount of pain keeps up. Icing it right now! This is part of BC that totally sucks! Worrying like this. ( not that any of it is good - except all of you women)

    Melody- good to hear  from you. What is wrong with your right shoulder? Is this from surgery?

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  • melody46
    melody46 Member Posts: 279
    edited March 2014

    No, oddly its the opposite side.  Rotator cuff area is really angry, I think tamoxifen is causing me joint issues but MO says chemo can sometimes unmask issues you may have already had.  I had surgery in that area 20 years ago. 

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

    Hello to all of you! I've been a "visitor" here for quite some time as well as other boards.  While I'm close to my 2 year "Cancerversary", I still feel as if I'm in the middle of the fight.  Recently, I've started experiencing a great deal of anxiety fearing a recurrence.  I have a strong family history...Great-grandmother, grandmother, and even lost my own mother at the age of 49.  I am 43 now and while I know God's plan is perfect....and my head tells me that faith has no place for fear....My heart argues.
    Throughout all the tests, surgeries, and chemo....I had a HUGE support system of family and friends.  And while I could still call upon them for virtually anything....I feel stupid doing so now.  I should be celebrating my cancer freedom, instead of questioning it.  Survivorship is a lonely place....which is why I've decided to join in here.  I've maintained a blog of my journey from the very beginning....working through each of my feelings. I've received much comfort from that....but I guess its nice to come here and know I'm not alone.  Thank you for the site and look forward to joining in with you all.
    Blessings.... 

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

    Hello to all of you! I've been a "visitor" here for quite some time as well as other boards.  While I'm close to my 2 year "Cancerversary", I still feel as if I'm in the middle of the fight.  Recently, I've started experiencing a great deal of anxiety fearing a recurrence.  I have a strong family history...Great-grandmother, grandmother, and even lost my own mother at the age of 49.  I am 43 now and while I know God's plan is perfect....and my head tells me that faith has no place for fear....My heart argues.
    Throughout all the tests, surgeries, and chemo....I had a HUGE support system of family and friends.  And while I could still call upon them for virtually anything....I feel stupid doing so now.  I should be celebrating my cancer freedom, instead of questioning it.  Survivorship is a lonely place....which is why I've decided to join in here.  I've maintained a blog of my journey from the very beginning....working through each of my feelings. I've received much comfort from that....but I guess its nice to come here and know I'm not alone.  Thank you for the site and look forward to joining in with you all.
    Blessings.... 

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  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    Welcome SportsMomma- glad you chimed in.  I hear you on "survivorship". I have tried to move on with my life and like you, I don't bother friends an family with any of this and frankly, I don't think they want to hear any of it anymore. 

    I am thankful for the information and sharing that get do here. It really is a touchstone to come to this site and check in every so often.

    Melody- good luck with the rotator cuff! Hope the cortisone works.

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

    Sportsmomma -welcome.. I  still come  to this board daily and take comfort in hearing from the same gals that went through treatment when I did.. I know its often in the back of our minds - and even when we pass the 5 yr mark, I know the thoughts will still be there.

    Melody - hope for the best with the injection.. I recently had injections into my thumbs for the arthritis in the joints - the pain has been intense and the shots for the first time really hurt and it took a week before the shots finally worked.. and my right hand still gets painful but not as bad as before the shot. I know the meds I am on is aggravating the joint.. my radiated breast is now smaller than the other -and even though its been more than a year after surgery, there is still a pinhole opened where the incision is..it still leaks a tiny bit everyday.. I think the radiation damaged the skin so it cannot heal.. I go back to my RO and MO next month so I can make sure its really ok.

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  • CassDugan
    CassDugan Member Posts: 100
    edited March 2014

    I had an appointment for a physical this past Monday, 4 days after the follow up with my MO.  My physician picked up on the possibility of lymphedema.  Despite the MO saying that there wasn't much to be done about LE that seemed to be only in the breast/chest, my physician offered to write me a referral for an LE specialist.  In the meantime, I'd begun doing some exercises & self-massage therapy that I learned about through my school sources.  The swelling and puffiness is definitely down some and I haven't had any numbness or tingling in the past few days.  It's one more vote for visiting another MO.  I don't understand why she would say that there was nothing that could be done when, clearly, there were things I could do (and have done, with good results) and also she could have referred me to a specialist.  I was also surprised that my physician went into the Tamoxifen SE's in *much* greater detail than did my MO.  I'd done my research before starting it, but still, it's kinda ridiculous to be getting better info from my physician about it than my MO.

    The LE self-care has been great incentive to get back into my exercise routine.  After only a few days, I've noticed how that positively impacts not just my breast, but also my attitude & energy level.  Shame on me for not getting back to it sooner!

    As for the MO, my partner dealt with the insurance company to learn that I can indeed see another MO at will, and has left a message to get an appointment made.

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  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited March 2014

    Cass - good for you ( and you PCP) for taking care of the lymphedema. Going to the LE therapist made all the difference for me. I still can't believe how ignorant our cancer treatment providers are about lymphedema and we go to pretty prestigious places! Scary.

    Recently , I was part of an initial study about when and how to get exercise introduced into treatment to help prevent lymphedema, since we really don't get much info on that in the beginning. I also think that some providers think we will all settle for some of the problems we inherit from treatment.

    I have my MO and PCP on April 1. One good thing with my new healthy lifestyle.....My cholesterol went down 60 points since I was diagnosed. I was always super active but I have pretty much given up meat and high fat dairy. Also taking some supplements recommended by my naturopath.  Just hope I get some help with the weird spine pain/numbness when I see the Dr.s this week. 

    Cass...Good Luck with you new MO. Keep us posted.

    Hope everyone else is doing OK. I had my one year " cancerversary " yesterday.  Tried to ignore it. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2014

    Cass, just wanted to drop in and say I'm sorry your MO didn't take your truncal lymphedema seriously. And of course as you've discovered yourself, there really is help for it. Here's more information:

    http://www.stepup-speakout.org/breast_chest_trunck...

    And here's information about lymphedema, written especially for healthcare providers by a doctor with lymphedema. Maybe he's teachable?:

    http://www.stepup-speakout.org/essential%20informa...

    There are many of us dealing with truncal lymphedema on the Lymphedema board here at bc.org. Please do feel free to come join us "swell" Sistahs.

    Be well!
    Binney

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  • CassDugan
    CassDugan Member Posts: 100
    edited April 2014

    Thank you, everyone, for all the information.  I'm learning this and so much more because lymphedema is the topic of my senior thesis.  I've been busy gathering sources for my research but I think I've tossed just as many articles into the "review for personal interest" as I have into the "possible sources" area.

    We did indeed go into Boston for the BCA event last night.  It's the first time either of us has been to anything like that (me, 'cause I'm a country mouse) and we felt some social anxiety as we drew nearer.  We met many interesting and friendly people.  The evening started off with local notable Callie Crossley introducing the event and playing the first 15 minutes or so of Pink Ribbons.  For those of you who have seen it, I'm sure you can understand when there was a collective groan as the clip stopped just shy of introducing the group of women with Stage 4 breast cancer.  Ms. Crossley kicked the panel discussion off with a question about where all the money raised by Pink Ribbon campaigns goes, and related that when she contacted the sources of recent articles for data, that none had been funded with any so-called Pink Ribbon monies.  It's an interesting and infuriating question.  On the one hand, it's good that awareness regarding breast cancer has been raised.  On the other, I'm saddened that the anger around breast cancer movements has been dissipated.  As one audience member asked, "Why is breast cancer an acceptable epidemic?"  There was also talk about cause marketing, cooptation of movements, accountability of charitable organizations, accountability for research monies raised by corporations for pink-ribbon items, and pink-washing.

    There were two topics that did not sit well with me.  First, there was a comparison between the breast cancer movement and the autism movement.  This involved a question about why couldn't breast cancer activists drive the direction of research in the same way as autism activists.  I would hate to see breast cancer activism move in that direction.  Autism activists have pushed research into some spurious directions, spending a lot of money to demonstrate the unlikelihood of some of their claims.  I realize that skepticism, even of science, is good; however, forcing an research to disprove an anecdotal claim based on spurious correlation is not a useful investment.  Second was the disparaging of science and the scientific method.  Again, I can understand skepticism.  That, in and of itself, is healthy and necessary.  Too, I realize that research is sometimes funded by the very companies who stand to profit from it and that influence sways results.  To condemn all research because of that association is just as reprehensible as to claim that all science is good.  

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  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited April 2014

    Cass ,

    Thanks for the report on the BCA event. After seeing Pink Ribbons, Inc. I too wonder where all the money goes. Was there an answer from the panel for the question, " Why is breast cancer an acceptable epidemic?"

    Your thesis sounds great ( you are in PT, right?) I think you might be interested in the PCORI-Pilot study I was in. The objective of the study was knowing that exercise and physical therapy are beneficial to women with a diagnosis of breast cancer and how to best determine women's needs and get them the appropriate services and information. If you want a copy I can pm it to you. When do you have to present your thesis? I will be interested to hear what you are discovering with your research.

    I had my MO appointment this week. She ordered a bone scan for the pain in my thoracic spine area. My PCP thought a few vertebrae might be rotated and pressing on a nerve. My PCP is an osteopath. She took X-rays, but didn't see anything. I am glad my MO suggested the scan. Honestly, you just want to know! If it comes back nothing, which I think it will,  I will actively see a physiatrist and take care of it.

    Blood work was all normal. I feel really good about my MO. She is working really hard to earn my trust. I really didn't trust anyone in the beginning of this BC thing.

    Hello to all and hope everyone is doing well.

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