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2017 Diagnosed-- A Place To Share "Whats Next"

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Comments

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited February 2018

    Legomaster: Unfortunately for us bi lateral gals, not much is really known. Only a 1 - 2% chance of this happening. It's interesting that even after Chemo your other breast went on to develop BC. I see a lot of women have mastectomies. I too have bilateral and mine were diagnosed at the same time. I was told by my surgeon that my chances of BC returning were the same whether I had a mastectomy or a lumpectomy. All the best for your future. You seem too young to be going through this.

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

    Ugh, the second breast thing is bugging me a bit. I had a clear mammo on both in June 2017, diagnosed the bc in the left in Nov but nobody has wanted to scan the right again (except me!)

    All I've had were 2 clinical breast exams (1 by the BS and 1 by the MO). They just keep saying the risk of having cancer in the other side is too low to merit a repeat mammo (& all its attendant risks). I think they're saying they'll scan both again in June; or maybe just the right? The left might be in rads at that time...; I might have the right and the left on a different schedule cause there's no way I'm letting the right go more than 12 months...

  • Roaming_Star
    Roaming_Star Member Posts: 66
    edited February 2018

    My apologies moth and pink - I did respond to your details about treatment but my post didn't show up... Thank you for sharing. It seems like the island is not as great as both of your facilities. I really feel for the folks from the top of the island who have to travel so far for treatment. Wishing I had options for another treatment facility as I've really struggled with my treatment plan, MO, and falling through the cracks because I live outside of Victoria. I am hoping that after discussing my concerns with my MO that the last leg of my treatment will be much more attentive and cohesive.


  • Annbee
    Annbee Member Posts: 81
    edited February 2018

    Itsstillme- Congratulations on finishing Chemo.

    Dodger girl l- I knew pretty quickly within days the other wasn’t going to work. It hit like a truck. MO said one or the other works.

    I don’t know why but I feel better not being the only one not to qualify.

  • legomaster225
    legomaster225 Member Posts: 356
    edited February 2018


    ItsStillMe, I only had rads on the side of the known cancer. There were differences of opinion on that too. I had a node that biopsied positive before chemo but was negative after chemo. BS wasn’t convinced I needed radiation but the RO said that because of the previous positive node and a somewhat close margin that we should radiate. They both agreed radiation on “surprise” side. My one regret was that we did not do any sentinel node testing on that side. There was no reason to -or so we thought. I would ask your doctor about that. That would have given me piece of mind if nothing else. Nothing in my mammo, MRI’s or ultrasounds indicated any cancer or swollen nodes on that side. I was very happy I decided to get the BMX though.

  • 53nancy
    53nancy Member Posts: 295
    edited February 2018

    moth, I know how you feel. I wanted my left breast checked again and they just kept saying it would be done onmy next mammo. I have actually now been told I am "cancer-free", but I am skeptical because in November they told me there is always a possibility of recurrence because of circulating cells that are too small to show on a scan. So I have to wonder - cancer free today but recurrence tonorrow?

  • legomaster225
    legomaster225 Member Posts: 356
    edited February 2018

    Pink, amazing how good we are at getting into that elite 1-2%. My doctors said the same regarding lump vs mastectomy. If my cancer was smaller ( and my breast was bigger) I could have gone with a lumpectomy. I'm very tiny though and would have needed implants after lumpectomy anyway or lived with half a boob. I just decided to do skin/nipple sparing mastectomy with immediate pre-pec implants. That part worked out very well.

    I think the reason the cancer was still in my second breast was because that second tumor, while small, was 100 ER/95 PR and did not respond as well to chemo. The cancer we were originally treating was only 23/10 and responded great to chemo.

    Your dogs are really cute!!

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

    I have been reading the recent posts about cording (I used the search function) and I think that's what I might have going on.

    I had lumpectomy and s. node removed April 2017. I had lymphedema in my arm, armpit, side, ribs below my breast and breast itself. With exercises I got all of that mostly under control, except the breast, which is the worst for swelling, and the arm. But that arm has settled down quite a bit.

    Last 3 days my breast and armpit have felt horrible. Really off. Sore. Throbbing and miserable. My arm swelling has flared up.

    Tonight I put my hand into my armpit, but near the very front, where it's almost visible and eeewwww, there is a collection of what feels like rubber bands under my skin. They are slightly lumpy, they pop like guitar strings. If this is cording, why on earth now? It makes no sense. I had full range of motion, there was pretty much nothing I couldn't do. And now this. It feels horrible! Any chance this will go away if I ignore it? (she says hopefully)

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited February 2018

    runor— I can tell you that no one really seems to know what cording is, just that it happens. Sigh

    I do believe cording will go away on its own eventually. Personally, stretching really helps. I stretch out on the end of a bed and hold a 3 lbs bar in both hands and stretch it out over my head and let the weight of the bar stretch out my arms, holding it there for many minutes. Followed by massaging of the corded area which seems to pluck (break) a few of the cords. They do feel like guitar strings and I feel them pop when they break.

    I tell my physical therapist that I feel like the have an octopus living in my arm pit and his tentacles go down my arm and cover my chest to the edge of the rib cage.

    Just like you, my cording is to a place now where I know it’s there but doesn’t limit range of motion too much.... just hurts when I stretch the wrong sa

    Keeps us posted, please, as you find what works for you.

  • legomaster225
    legomaster225 Member Posts: 356
    edited February 2018

    Agree. Cording can happen any time and it can be downright painful on top of limiting movement. Runor, see if you can get in for pt. That helps immensely. Then they can show you techniques for self massage and stretch it out for you.

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited February 2018

    Yes, I've had cording on and off as well since Oct. Recently it was aggravated by shoveling snow. My bad!!! I was told it will go away but then I was told a lot of things through this process that have or haven't happened according to what I was told.

    Legomaster: Yes, you're right about the mastectomy. I was lucky enough that the three small lumps on my left side were all right in a row and within 3 inches start to finish. Surgeon said it would be like taking a piece of pie out of the breast. I'm small breasted as well. Without a bra on the left side does look smaller. Small enough that it looks like I've had a mastectomy. Also for me my right side was DCIS. But, then right up until the time of the surgery all tests (MRI, ultrasound, biopsy) indicated there was no node involvement on the left side but surprise 2 nodes were indeed infected with cancer with the largest being 6 mm which isn't much.

    53nancy: Those stray cancer cells can stay dormant for years. It's really in all of us. It's whether or not those cells decide to get active.

    Moth: If you're not having chemo (not showing in your profile that you are) you should be all done with radiation by June. They get you in pretty quick with all your treatments whether you're ready for them or not. And then, you can get squished in June on both sides. You just have to tell yourself not to go to that dark side.

    I guess for most women a mamo every two years is enough. I know a couple of women who had mamos and then six months later they have BC. Then there's other women who never go. I met a lady in radiation who initially had anal cancer. The way they discovered her BC was by doing a CT scan after she was finished chemo for her primary cancer diagnosis.

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

    Pinkismy, had to chuckle over your snow shoveling oops. I spend a lot of time shovelling snow too, and splitting firewood. Now that you mention it I did do quite a bit of shovelling because the banks on either side of the path to the chicken pen were too high. The water and food buckets kept banging into the bank as I walked, and spilling. So I had to shave down the banks so I could function out there. Then had to spread sand for safety on the ice. Then armpit hurt. Then cords popped up. Winter is dangerous!

    Doger's girl - you stretch until you feel the cords pop?! Oh my god. Is that even a good idea? I am feeling icky just thinking about it. I have done some stretching over the last months that was initially extremely painful, but nothing 'popped'. Harsh.


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


    Change of plans for me -

    My Oncotype came back showing me ER negative (despite biopsy and lumpectomy pathology showing 10% ER staining) so they're going to treat me as a triple neg now.

    Chemo starts next week.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited February 2018

    Runor—. No, I stretch and then massage the area and can feel cords pop. I have no idea how many there are. I know thru physical therapy, I have had at least 10 cords break/pop.

    I have been shoveling snow this winter using my cancer side arm, too. Not as sore as I thought it would be, thankfully!!

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

    Moth, my reaction to reading your post is that I would ask for a second opinion on your initial pathology report. It is absolutely disorienting when you get two reports that are so opposite. How could the initial pathology be so off? If it were me, for my own peace of mind, I'd want another opinion, never mind that someone is going to tell you the Oncotype is the gold standard of testing. Mistakes happen. I am sorry to hear this. You must be shocked too,

  • houmom
    houmom Member Posts: 102
    edited February 2018

    Pink, I had a clear 3D mammo in April, before finding an almost 2cm lump right under the skin in early November, with an additional 1cm lump being found by ultrasound. I was shocked that it could grow so quickly.

  • eastcoastts
    eastcoastts Member Posts: 352
    edited February 2018

    I also had clear mammo -- with lump I was showing them in place (like: it's here!). I had been getting 3D mammos (due to family history) since the age of 39. All clear. US did note the tumor but the radiologist's first words to me were: good catch. Sad MRI saw it but of course we don't usually get US or MRI. Although knowing what I know now about dense breast tissue, I would have likely argued for more.

    Moth: Sorry about your news. Sometimes it seems like two steps forward, one back. Hang in there.

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

    runor - It is actually going to the provincial head pathologist for review - mostly because they want to sort out what to recommend for tamoxifen/AI after treatment & I think all discordant path reports get reviewed by the tumor board automatically. (It's possible that my tumor is just not very homogenous & that both results are correct for the little chunk they tested.)

    But I guess it's not really a change of plans for me - I phrased it wrong. It's just a change of thinking.


    The MO would have been recommending chemo anyway, she just recommended it more strongly. That weak ER, PR- and Grade 3 were always problematic & the fact that it popped up just a few months after a clear mammo. It's acting super aggressive. I went in to the meeting expecting to be choosing chemo and just obsessing about which protocol to go for. This took the deciding out of the equation as the lighter chemo wasn't on the table....

  • peachyjeanne
    peachyjeanne Member Posts: 155
    edited February 2018

    I tell everybody I can (if we're talking about it) to get an ultrasound if they have dense breast tissue. My tumor was mammo occult. I had a "clear" 3D mammo in Dec 2016 and was diagnosed in April 2017. Even knowing it was there, it didn't show on a mammo. After my biopsy they did a mammo to check that the marker was in place and you would think the marker was the only thing there. Like finding a polar bear in the snow is how it was described to me. On the US film it was clear as day.

    If there is one bit of advice I always give to people who are speaking to me about breast cancer it's: "If your mammo comes back saying you have dense tissue, ask your doctor for a follow up ultra sound. Demand it."

    For cording, I found that the at-home stretching helped a lot. I found a small, 3 foot piece of scrap moulding I had in the basement and used that to stretch over my head and side to side. The pain gets less and less as you stretch the cords. Think of it like pulling taffy. It loosens up as you increase the stretch. Also, get your fingers in your armpit and just work at them. I'd knead my armpit as I watched tv. Just keep manipulating them. Then as they thin out, they can snap/pop. For me, when that happened, it wasn't bad. Like a snap that felt like a pin prick. I still have one good sized cord but it is so stretched out it doesn't limit my range of motion nor does it hurt. I don't stretch every morning and night anymore, but do every so often when I think about it.

    moth I'm sorry you had the change of diagnosis. I can relate. For me, and my personality, I like to know the plan and attack it. When the plan suddenly changes, I get frustrated. My mantra has always been "I just want things to do what they're supposed to do" I want the light to turn on when I flip the switch, I want the car to start when I turn the key, the toilet to flush...etc. I don't need anything fancy in my life. The light doesn't need to be a crystal chandelier, the car a Porsche or the toilet a throne - I just want things to do what they are supposed to do. That goes for people, too, I guess. So when I had a treatment plan in place I was checking off all the boxes - doing what I was supposed to do - to get through it. I did the chemo. Check. And I had the surgery. Check. Then, I found out my diagnosis changed from HER2- to HER+ and I now need another year of treatment. Um, say what, now? Argh! I gave myself a good 24 hours of being sad, scared, frustrated and really pissed off. And then I got on with it. At the end of the day, it is better to get the diagnosis right and the appropriate treatment. No matter when it happens. Hang in there.


  • 53nancy
    53nancy Member Posts: 295
    edited February 2018

    Hi everyone, just want to say thanks for all your posts, and I appreciate being able to catch up. Pink_is_my_colour, thank you for your comment. I was aware of it but, personally, I think I would prefer to hear "there is no evidence of disease" than to hear "you are cancer free". To me, saying NED gives a more realistic picture of the actual case. To be told that "you are cancer free" and having it left at that could make some women feel that it means the cancer will NOT return. It may not, but I would rather keep in mind that some day, some time there is a possibility of recurrence, even if it is in the years ahead.


    The RO also told me that my MO will probably sign off on me at the end of April, which makes it a little scary to think of being "left out in the cold", but I am hoping that, even if I will have to deal mainly with our local doctor, that the MO will continue to order the blood work at least on a regular basis. One example is tumor makers, which our local hospital does not check for.

  • houmom
    houmom Member Posts: 102
    edited February 2018

    When I had gone for the mammogram back in April, it was because of pain in the non-cancer breast. My PCP ordered a diag MM and US, but when I went to the imaging center they screwed it up and just did a screening MM and no US. I was just glad to hear that it was clear and forgot about it. I don’t think the outcome would have been different, I still would have had the surgery I had, and thankfully I’m stage 1A still. If I had hadlymph node involvement I probably would have been talking to some people about that screw up.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited February 2018

    Hi ladies, beside mammogram didn’t find my lump, US didn’t find it also. I have to do MRI so it shown up. To me mammogram is a waste of money for dense breast. I told my husband I feel like I’m living in fear, finished radiation for 3 weeks met with my MO, he still wanted me to keep my port for few more months. That really makes me worry am I expecting recurrence. I have to tell myself don’t think about it.


  • Georgia1
    Georgia1 Member Posts: 188
    edited February 2018

    Paulette, I'm sorry you are feeling a bit low. Of course any of us can have a recurrence, but you have certainly done all you can to get the odds as low as possible and you are absolutely right that maintaining your wonderful positive attitude is important. Did your MO explain why he wanted you to keep the port? Is it until you have an MRI at your "anniversary" in April?

    I am going to see my MO for a check-in tomorrow and am grateful I have minimal SEs so far on the Tamoxifen. Wishing you a lovely week, and I hope everyone pulls out their "bracelet flasks" for Mardi Gras tomorrow!

  • mkn86
    mkn86 Member Posts: 129
    edited February 2018

    hi everyone, i’ve been lurking on this thread for a while. i’m from the september and november chemo threads. diagnosed with TNBC at 31, single. finished chemo about 11 days ago and waiting for surgery next. just wanted to chime in for Paulette.

    Paulette, i'm sorry you feel down about the port. here, my MO said it's standard to keep it for one year. and considering my risk i was suprised they also told me that i have to keep it for one year too. i was expecting them to tell me to keep it on longer... because my high risk years are far longer than 1. sending hugs to you. 💕

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited February 2018

    mkn86–. Welcome. Glad you posted. Congrats on finishing chemo!!

  • Georgia1
    Georgia1 Member Posts: 188
    edited February 2018

    Hi mkn86 and welcome! We are so glad you joined us and DodgersGirl was so smart to create a place we can all check in now and then on "what's next." The shared information and emotional support is so helpful.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited February 2018

    paulettek—. All the treatments are physically hard and you got thru them like a trooper. The part after treatment is mentally hard. I don’t know how long the worry of recurrence lasts. I am hoping it lessens each day.

    I have noticed more and more of my old life coming back all the time now, even hours where cancer isn’t my first thought.

    I understand the mental test that keeping your port in can cause but it could simply be standard operating procedure for their cancer office.

    This too shall pass. Sending you good bibe

  • OCDAmy
    OCDAmy Member Posts: 289
    edited February 2018

    Hi mkn. Wishing you best of luck with surgery. You've been through so much, I'm glad chemo is finally over!

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

    PeachyJeanne - oh girl, you totally get me! Like, my most important criteria when I buy a car is reliability. I want things to do what they're supposed to do. I hate surprises lol. Oh well, this whole process is like giant nasty surprise so I guess I'd better get used to dealing with them. I think a lot of my meditations will be on patience and coping with the unexpected :)

  • Roaming_Star
    Roaming_Star Member Posts: 66
    edited February 2018

    moth - lol - I've never meditated so much in my entire life! "Letting go of control" meditation is bookmarked for my goto meditation!

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