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  • stellamaris
    stellamaris Member Posts: 313
    edited September 2018

    i would also love to meet up.

  • Pots
    Pots Member Posts: 189
    edited September 2018

    I too love the idea of meeting up this fall. For any of you thinking about going back to work after chemo and radiation, my advice is to give yourself lots of time to recover. I thought I would bounce back quickly and was surprised at how little energy I had. I finished chemo and rads in April 2014 and thought I would be ready to got back to work in the fall. Nope. I went back in March 2015 and should have waited until May. Also if you can do a return transition and a work hardening program, do it. What you think you can do and what you actually can do are two different things. When you go back to work, people will expect you to be back to “normal”....they won’t see how much effort and energy it takes for you to get through the day.

  • moth
    moth Member Posts: 3,293
    edited September 2018

    Hello my west coast peeps!

    Just popping in quickly to say hi!

    Yes, I'd love to meet up - I just need notice to shoehorn it into my schedule.

    I started nursing school Sep 4th, finished rads on the 11th. Had my follow up with the MO today and found out I have osteoporosis ---- booooo :( ----so I'm being referred to an endocrinologist who will probably want to start me on Prolia or Zometa. And I'm putting the gym membership/weight training item higher up on my 'to organize' list. I wasn't expecting it as I've been active, fit and outdoors a lot all my life but I guess the "small, pale north european woman" genes are working against me..

    School has been good so far, super busy, already had lots of assignments, already behind on my reading lol. First midterm is on Monday - eeek. I feel ancient some days - no surprise since I am ancient compared to all the young ones in my class! But I'm enjoying it and it definitely means there is very little opportunity to obsess about being sick because I literally just don't have the time!

    My energy levels are fine but I need to tinker a bit with my schedule as I'm not sleeping enough and I still haven't got all our family & dog routines down into a comfortable pattern. Breast is still burned and itchy post rads so I'm still dealing with lotion several times daily and trying to avoid scratching it like a mad woman - especially in public!

    hugs for everyone

    m



  • NVDobie
    NVDobie Member Posts: 122
    edited September 2018

    Hi, pots

    Thanks for the insight on returning to work. I finished chemo in March, rads in Aug. insurance company had me pencilled down for returning to work in Nov. 6, I assume they picked the date because it’s about 6 months mark for LTD.

    Was thinking skipping the gradual return by returning in Dec instead of Nov. hard to do my job part time. But I can probably work from home if needed, which will be helpful.

    Moth

    Sorry about the osteoporosis. Good to hear you finished rads, my breast is almost back to normal now. 4 weeks after my last treatment. Itching goes away after a week or so, skin peeling didn’t hurt but made some areas tender.

    Will you be taking Tamoxifen? Supposed to be better for our bones vs. other options.

    How did your MO decide to check for oste? I am curious as my MO didn’t ask any questions nor ordered any test for baseline prior to tamoxifen.


  • moth
    moth Member Posts: 3,293
    edited September 2018

    NVDobie - I'm not going to be taking tamoxifen; I'm so weakly ER+ that most of the consensus is that there is no evidence it would do any good so in consult with the MO, we decided against it.

    BUT, while we were considering it my MO said we'd need a baseline bone scan. It's called a DEXA scan, super easy, fast, and very low xray radiation. So low that the tech doesn't leave the room and you don't get garbed in lead aprons.

    Honestly, I'd get your MO or GP to order it. Chemo can cause osteoporosis - cyclophosphamide for sure, not certain about the other ones. For sure you qualify for it as a breast cancer patient and esp if taking hormonal therapy.

  • dearlife
    dearlife Member Posts: 634
    edited September 2018

    Moth so sorry about your osteoporosis but it can be managed and sometimes reversed. The surgeon told my husband his spine was “like eggshells” when osteo was discovered after a fall. He had Aclasta infusions and had 23% improvement after one year, then 26% improvement the second year. He is now off all meds except Tums. Which we need since we are travelling in France right now😃.

    (Trying to stay on a somewhat healthy diet but hard with the fabulous local cheeses and crusty baguettes. Oh, and good wine!)

    I am happy to hear you are living your dream and have gone back to school!

    Hope we can all meet up in November.

    Best wishes to all ❤️.

  • NVDobie
    NVDobie Member Posts: 122
    edited September 2018

    Hi, moth

    Thanks for the tip. Will ask my MO at next appointment. Tamoxifen is said to be bone friendly, MO actually said it may make my chemo induced rheumatism better.

    I am on the alert for other more serious side effect from Tamoxifen tho. So will do ultrasound every 6 months to check on Uterus and ovary.

    A friend of mine is taking Prolia to treat the bone loss from AI. it is not covered by MSP, some insurance coveres 50%. its an injection every 6 months. But Prolia does have its own risk, although rare, some side effect is severe. And once you stop, the bone declines again.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2018

    I have been on Prolia for 2 years and got 4.5% bone growth back in first year~~have not had a bone density test this year as way too much other medical stuff going on. No S/E of note and my dentist is aware. Costco is the cheapest by $100 usually.

  • NVDobie
    NVDobie Member Posts: 122
    edited October 2018

    https://community.breastcancer.org/forum/120/topic...

    here is an thread on Prolia.

  • moth
    moth Member Posts: 3,293
    edited October 2018

    thx for that NVDobie.

    I just had my bloodwork and my wbc's are still so low :( They've not really budged since I finished chemo on July 20. Now I'm scared of being out and about at the school. I called my MO and left a msg asking if they could give me more grastofil shots.

  • NVDobie
    NVDobie Member Posts: 122
    edited October 2018

    moth

    Are you open to complementary therapy? Have you heard of Moxibustion ? One of the benefits is boost WBC. Less invasive than Acupuncture

    I do it at home myself throughout the treatments, still doing it now as part of maintence routine.

    Also maybe check out dry Logan fruit and dry Chinese dates both are food items you can find at Chinese supermarket but also widely used as Medicinal purposes.Both help in boosting blood creation.

    I am an student of Chinese medicine at night. :-)


  • NVDobie
    NVDobie Member Posts: 122
    edited October 2018

    looks like this. Smell is strong but there are also smoke /smell free ones.

    image


  • van2018
    van2018 Member Posts: 15
    edited October 2018

    Hello everyone, I went to see my PS today. I'm getting a BMX with reconstruction later this month. PS wants me to make a decision on tissue expander vs direct to implant by Friday! I'm doing some research now but thought I'd see if anyone local has had to make that decision and can offer any insights. Thank you!

  • akmom
    akmom Member Posts: 98
    edited October 2018

    Hi van2018 and welcome to the club. I had BMX without reconstruction so can't help you there, but no doubt others will chime in. Who is your PS?

    [Edit - just saw from your previous post that it is Dr. Van Laeken]

  • bluesky1969
    bluesky1969 Member Posts: 80
    edited October 2018

    Hi Van2018;

    I had a R MX with a TE placement on May 1st at MSJ. I've been waiting for a second surgery date, none yet. (My original PS moved in Aug to the Maritimes because he couldn't afford to buy a house!).

    I am pleased with the team I had, my healing has been great - just waiting on a 2nd stage surgery date. I guess that's the drawback: it extends the process physically and psychologically. The TE is fine, some discomfort.

    Please feel free to PM me with any questions.

  • NVDobie
    NVDobie Member Posts: 122
    edited October 2018

    How is everyone doing? We are getting some great sunny days lately. So nice

    Does anyone here have experience or the knowledge on use of the clips during lumpectomy? I had a re-excision done by Doc Davis following a lumpectomy 6 months prior due to close margin.

    Reading her operative report, it was mentioned she did not see any clips from previous surgery, and she also mentioned she placed the clips after she completed the dissection.

    What is this clip the surgeon referring to?


    Thanks in advance for any insights


  • moth
    moth Member Posts: 3,293
    edited October 2018

    NVDobie - I have clips. They're just little markers left to indicate the edges of where the surgeon operated. I don't think all surgeons do it but mine did. I have clips on the lumpectomy site and in my R breast, after they did the stereotactic biopsy, they placed a clip in as a marker as well so in future we know where they were looking at wonky tissue. They're non reactive, safe to have MRI after etc.

    hth!

  • runor
    runor Member Posts: 1,615
    edited October 2018

    NVDobie, I had clips placed after my lumpectomy. Then things bled badly, the clips got messed up when the surgeon went back in to re-stitch everything and placed more clips. I have clips where she removed the lymph node. On a mammogram, it looks like I got shot in the boob during duck hunting season. I counted 13 clips, like a gunshot wound. That's the story I'm going with. Gunshot injury to boob. Someone mistook it for a mallard.

  • NVDobie
    NVDobie Member Posts: 122
    edited October 2018

    Hi, moth, runor

    Thanks for sharing the info on clips. Surgeon didnt mention anything. Maybe she should given she did put some foreign body in to my boobs. Well. Not much i could now.

    I read up on line, it sounds like a old school approach and supposedly can be useful for guiding radiation locations.

    Hope everyone is doing well.

  • NVDobie
    NVDobie Member Posts: 122
    edited October 2018

    Hello, ladies

    Hope you all doing well.

    Has anyone used tomosynthesis (3D mammography) for your follow up Mammograms?


  • moth
    moth Member Posts: 3,293
    edited October 2018

    NVDobie, is anyone here doing it? My surgeon (who did his surgical oncology fellowship in the US) told me about it and said he thought it was great technology but that it wasn't available here yet. This was around June, I think....

    I'm thinking of doing MRIs on top of the gov't paid mammos. My gp said she'd refer me for an mri but I'm guessing msp won't pay for it so I'll pay out of pocket. Worth it for peace of mind. But if the tomosynthesis was available I'd want that as well...

  • NVDobie
    NVDobie Member Posts: 122
    edited November 2018

    moth

    My research shows Women’s Hospital in vancouver has one since 2017. My radiation oncologist said BC cancer in Vancouver also has one. The way she explained it is that the radiologist will order it if they consider the breast tissue is dense.

    https://www.bcwomensfoundation.org/about/the-hospital/programs/bc-womens-first-in-province-to-offer-3d-breast-screening-with-tomosynthesis

    One of things the two radiation oncologists I may have said is to go to the same center for breast imaging so they could have comparison. I am debating about that as my original mammogram was done at a private lab who made some mistake so I don’t want to return. Only option would be the Lion’s gate where I had my biopsy, but they will only have ultrasound image history.

    What you ladies think?

  • moth
    moth Member Posts: 3,293
    edited November 2018

    That's interesting NVDobie. I'm going to RCH now (though some of my previous mammos were done at MedRay in Coquitlam). I was told that my tissue is dense and the techs there all recommended I ask for MRIs. Nobody mentioned tomo as an option - except my bs who said it's a shame it's not here yet. I'll ask about this next time I see my doctors.

    Oh & yes, I was told to keep going to one place as much of the diagnostic benefit comes in being able to compare new & historic scans and when they're done on the same equipment it's easier (plus I think not all the places are sharing the scans with each other).


  • Walden1
    Walden1 Member Posts: 110
    edited November 2018

    Count me in if you are still planning to meet up in Nov

  • bluesky1969
    bluesky1969 Member Posts: 80
    edited November 2018

    Same!

  • NVDobie
    NVDobie Member Posts: 122
    edited November 2018

    on tomosynthesis, my MO was the one mentioned it when I asked him about imaging on Dense breast tissues. I was inquiring about MRI at the time of discussion, he said MRI produce too many false positives.

    Only after hearing from him, I started looking into it.

    I wonder it is possible that some doc doesn’t mentioned it because the hospital or center they belong to doesn’t have this machine.

    Unfortunately some times the medical practitioners are not always the most informed.

    BCCA Vancouver pharmacist is still giving out files that was created in 2008. So many patients walk away fearful of soy and phytoestrogens

  • GoAway
    GoAway Member Posts: 1
    edited November 2018

    Hi girls,

    Just discovered this forum. Diagnosis came last Friday, Nov 2, as a bomb.

    Would love to meet others who have been through this.

    All the best to everyone,


  • moth
    moth Member Posts: 3,293
    edited November 2018

    Hi GoAway. Welcome to this club - the reason we're all here sucks but the people are lovely so there's that....

    The early days are really hard so be gentle with yourself. It gets better. Hang in there. Ask any questions or just vent

  • akmom
    akmom Member Posts: 98
    edited November 2018

    Hi GoAway and welcome to the club nobody wants to join... You will find lots of information and support here. Warm (virtual) hugs x

  • BluGene
    BluGene Member Posts: 10
    edited November 2018

    Hi ladies,


    The whirlwind has begun as I start to balance life before and after diagnosis. So far, so good, but I’m feeling the pressure a bit as some work trips, and my husband doing night courses has just begun. But...we’ve got this!

    I just got a call from the Jim Pattinson hospital. Have any of you been there? I’m going in to discuss treatment, and I have already done a lot of thinking and research and have already chosen double mastectomy, prophylactic on the left.

    Anyone who’s been there...advice? Comments? I’m going on Tuesday. Just had partial mastectomy last Monday - margins close on one side

    Thank you!

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