Fill Out Your Profile to share more about you. Learn more...
Take Our Poll: How well do you feel your family understands your diagnosis?
Share your story: Your reflections about Mother's Day

Response to neoadjuvant chemo?

Options
12467…14

Comments

  • Houston2016
    Houston2016 Member Posts: 248
    edited October 2016
    Options

    Now that you mentioned about imaging, I too have dense breast, just happened I did an ultrasound and mammogram of the right breast after my chemo on 09/09/16. The results said normal with a tiny cyst on the upper part of right breast. When the BS examined me on a visit he mentioned a large mass then later I asked him prior to surgery, he said it was normal. Now my left breast is the one with BC. Now I started to worry that the imaging may fail to detect the right breast too. Should I consider an MRI?

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2016
    Options

    Houston,

    From what little I know, proton therapy is able to very precisely target the areas necessary, moreso than conventional radiation. But it does tend to cause more skin issues, which might interfere with reconstruction. However, photon therapy (conventional) has become very advanced and is also very precise. I was very concerned about cardiac issues, so they did IMRT/RapidArc with inverse planning. And I did the breath hold technique, which pulled heart out of radiation field.

    I would just express your concerns about cardiac exposure. They did a 3D mapping for me to see if the breath hold technique would be successful in sparing my heart. If it wasn't, they were going to refer me for proton.

    And maybe google above because I certainly can't explain it well! It's so complicated!!


  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2016
    Options

    Houston, they often routinely do MRIs after diagnosis. Did they offer you one? If it were me, I would get one. If I could turn back time and knew then what I know now, I would've demanded an MRI years ago because of my dense breasts and my sister's diagnosis. But I ended up deciding to get a bilateral mastectomy so I never got an MRI after diagnosis.

    I'm sure you're fine, but MRI is far superior to any other imaging.

  • reflect
    reflect Member Posts: 280
    edited October 2016
    Options

    Thanks for your concern, Meg and Mom of Twins! I am recovering from my fall just fine. Re: creeping tingling feeling from Arimidex, it comes out of nowhere and moves up or down my side or leg, then goes. Sometimes it makes me shiver. If this is the worst SE I have, I'm thrilled.

    Re: MRI for dense breasts. I am beyond angry that I was never referred for one, or a 3D mammo--at least referred to a breast center that is part of the hospital's network. They had been following a spot since 2006, many follow up u/s (never showed anything), many 6 month call backs, but the "junior" radiologist saw nothing the time he read my images, and when I came back in a year, there it was. Of course it wasn't that easy, and I had to request an MRI myself after researching dense breasts...and oooops, 2 cancers...Multiple attempted biopsies --aka my breast is a pincushion???--failed before I switched to a better hospital. Repeat all biopsies. From 12/15 mammo to 2/2 dx. Hell.

    Women with dense breasts need those MRIs. And we all need to go to the best hospital/cancer center available. I traveled an hour instead of 20 minutes just for my DEXA because I don't trust my local for anything now.

    Sorry for the rant. I need to chill now so I can get to sleep. :)

  • meg2016
    meg2016 Member Posts: 188
    edited October 2016
    Options

    Houston2016- Proton therapy is not offered at many places, and it can be difficult to get outside of a trial at some of them. It also can be difficult to have insurance agree to pay for it. For breast cancer, it is still in the earlier stages although it has been used for a lot of other types of cancer for years. Here is a website that I think does a decent job of explaining the difference (although realize they are trying to get patients to come get proton therapy, so it might not be a balanced representation.) http://www.chicagoprotoncenter.com/cancers-tumors-... Starting soon on finding a place you may be able to do it and talking to them about the process would be my advice unless it happens to be offered where you are going anyway, then it may be offered as an alternative for you.

    Mom_of_twins I completely agree, I had early screenings, I knew my risk and started young. Yet I also had relatively advanced cancer by the time they found it despite a "clear" mammogram the year before. Even after they knew where to look from the ultrasound it was still a struggle to find it on a mammogram. I tell everyone I know to ask whether they have dense breasts and ask about secondary screening if so.

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited October 2016
    Options

    reflect I don't trust anything local now either. I was getting mammograms every 6 months for two years for "calcifications." Next thing you know I'm stage III. I thought of calling a lawyer but I haven't had the energy to dig into it. I still might, but from what I understand all of these scans are subjective. It's funny too, my team at DFCI and BWH insist on all scans, treatments and surgeries down there in Boston. When I first got my second opinion at DFCI they REDID all of the imaging and biopsy samples. When I asked about why they were redoing it all the reasons were vague, that they liked to have their own staff review everything. But it definitely made me wonder at what the local place missed.

    meg - re: PALLAS - I thought that was only HER2- candidates but I could be completely wrong. May want to ask that.

    I'll be in Boston on Oct 20 for Herceptin and Lupron if you happen to have appointments. :)



  • meg2016
    meg2016 Member Posts: 188
    edited October 2016
    Options

    fightergirl711 Yes! I will be there! I have my radiation verification that day, so I will be in that department, but PM me when your appts are and maybe I can run up and say hello. I have my Herceptin and Lupron on the 21st! Too bad, we could have been infusion buddies! :) The website for PALLAS says HER2 + and -, but doesn't give a lot of detail. Sounds like we are on the same infusion schedule, so surely we can end up on the same day! I was on Fridays because my MO was in that day, but I don't have to see her now every time, so planning to move to Thur so I can go home Fridays.

    I had all of my scans redone at DF as well, although they didn't take new biopsy samples they did request the slides to re-review . One of the MRI reports actually referred to "poor MRI technique" used in a previous scan locally (and I live in a decent sized city and this was at a large hospital.) That is scary. My husband says all scans from now on will take place up there, he was so angry about that. Lots of time in Boston for me!

  • ssinuk
    ssinuk Member Posts: 63
    edited October 2016
    Options

    I had an MRI at dx at a top centre with a BC specialist and yet the results were still 'suspicious' and inconclusive rather than clear. For some of us no imaging gives a definitive picture

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2016
    Options

    Wow, SSinUK. You're right...no imaging is fool-proof. I hope imaging improves dramatically in years to come because imaging has seemed to miss it in so many cases....it's scary.

  • bluekoala
    bluekoala Member Posts: 73
    edited October 2016
    Options
    Houston - I was diagnosed at 35, so I was automatically referred to a genetic counsellor. She looked over my family history and said there is nothing obvious, but could be gene she involved but we don't know which ones yet.
    I can get free genetic testing if my family history suggests it is likely, otherwise I have to pay. I still could be BRCA positive, because it could have been passed down from my dad from his dad, and never shown up in any of the women in the family, but I'm not prepared to spend $900 to find out at this stage.
    I don't know what happens in other countries, but in australia, the BreastScreen programme is available and recommended for all women aged over fifty (it's either annual or every two years, I don't know). My sisters now are also eligible for the programme, starting from about ten years earlier than the age of my diagnosis.
  • meg2016
    meg2016 Member Posts: 188
    edited October 2016
    Options

    Just wondering if this group also received a Residual Cancer Burden (RCB) score along with your pathology? It seems from what I've read that it is a better predictor than CPR of long-term recurrence, but its hard to find a lot of actual data on that. I would love any information anyone has on this.

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited October 2016
    Options

    Good morning - I think someone on this thread (but not entirely certain) mentioned something about their OB GYN not recommending an oophorectomy, is that right? I've scanned my favorites but can't find the post. Anyway I'm hearing mixed messages about it. I've spoken to my midwife about an oophorectomy vs. OS (she has also been my annual lady doctor for the past 16 years.) She told me at this stage in my life it's six of one, half dozen of the other, it's more about what I'm comfortable with. My MO said the same. So I'm interested in the reasons why to definitely keep the ovaries if they are going to be suppressed through menopause anyway.

    If it wasn't this thread, please pardon my post. :)

  • meg2016
    meg2016 Member Posts: 188
    edited October 2016
    Options

    fightergirl711 I read it also, I don't think it was on this thread but I cannot remember what thread it was. I do think SpecialK (not sure of that spelling) user was one of the people who posted that she got that advice from her OB. So maybe if you search for her posts you can find that thread. Its interesting, because my MO agrees with your doctors- my ovaries are done either way, so if I wanted to keep them "just in case" (I am not sure in case of what? New drug options? New information that keeping them is the way to go?) then the Lupron is fine. But I am strongly leaning toward Ooph. I have not yet talked to my Midwife or an OB about it, which seems to be who are advising women to hang onto them. I plan to talk to a good friend of mine who is a great OB and surgeon who performs a lot of Oopherectomies and Hysterectomies "off the record" about this and see what she says. I will definitely let you know what I find out.

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited October 2016
    Options

    Thanks meg2016 - one of my good friend's husband is an OB GYN too, so I plan to ask him. I'll let you know what he says, I might see him later. My midwife and her practice are usually pretty conservative, so for her to say it was really my call made me lean toward getting my ovaries removed and reducing at least one drug for the next 5-10 years.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2016
    Options

    Hi Meg!! I had a RCB score on my pathology report--I ended up a high RCB-2. I really was surprised to be high in that scoring, because I appeared to have such a dramatic response to chemo based on manual exams and imaging. Like we all know too well, the truth lies in the pathology slides.

    My oncologist provided me a graph regarding RCB scores, which showed that 90% of ER+ patients with a RCB-2 are alive and well at 5 years. Triple negative, the risk level is so much higher as a RCB-2. All I know is that being an RCB-1 is an equivalent prognosis as having a PCR, and the prognosis becomes incrementally worse along the continuum of the RCB index

    As far as the oophorectomy, I'm also trying to understand if one is superior to the other (it's much more clear if you have a BRCA mutation). I tried to get the ooph, but my surgery went seriously awry. We'll see if I'm brave enough to try it again someday.

    But I have gotten the impression from some that keeping your ovaries has benefits; but don't understand that because they're making them non-functional with Zoladex or Lupron. I'd personally prefer to just get rid of them.

    Glad this thread is still going!! Hoping that we hear from others who had residual cancer after chemo and will share their stories!!

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited October 2016
    Options

    Hi Mom and Meg - I just spoke to our friend the OB GYN at a local teaching hospital, he said at least for me, what matters is that I stay in menopause, whether the ovaries stay or go. There really isn't any advantage for them to stay, unless I really don't want surgery. My ER level was also 90% according to my path report, so I'm not really low risk for any stray estrogen floating around.

    I'm sorry Mom that the surgery wasn't easy for you. I've had my first surgeon appointment planned for Nov. 1, now I feel better about going that route.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2016
    Options

    fightergirl, thanks for the information. And thank you--I just had a really rare complication happen, so even though I got the incision that goes along with the surgery, I still have my ovaries. From what I know (minus me), this is a fairly straight-forward and low-risk outpatient procedure. Most people I've talked to did just fine and said it wasn't bad at all. I might give it another try next year. I definitely think it's a good decision, especially for the very high ER+ ladies

  • reflect
    reflect Member Posts: 280
    edited October 2016
    Options

    Hi Mom and Meg, I looked up RCB also, after seeing it on my path report. Mine is III, which isn't good but better than a IV I suppose. Well, I'm doing everything I can, and the anastrozole hasn't proven difficult for me so I'm grateful for that. Other days, I'm less philosophical and more freaked out. (Me freaked out=madly googling and not talking to anyone. Not good, but not throwing things either)

    Started rads today. On ward.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2016
    Options

    reflect, we are doing all we can!! Did it give a number value, aside from the category III? Mine was close to 3..like 2.96 or something, which is a RCB-II (barely). I hope the radiation goes quickly for you; even though it feels like Groundhog Day, it goes by pretty fast. And we have the same "freaked out" version of ourselves. That's exactly what I do...madly google and don't talk to anyone!!

  • reflect
    reflect Member Posts: 280
    edited October 2016
    Options

    Hi Mom, yes, it was 3.3 something. It did freak me out at first but today I'm thinking, well, it is what it is. Although I do have a very different vision of what I want my life to be now, and not waiting for "someday". Travel with my kids? Quit my job and move to Bali? (SS would go a loooong way there, although I'm still too young to collect) Finally give that art life a real chance?

  • sbelizabeth
    sbelizabeth Member Posts: 955
    edited October 2016
    Options

    "Groundhog Day"....that's about it. Day 1, get it done. Day 2, get it done again. Day 3....until it's over. It did go by pretty fast, though.

    I'd never heard of RCB until just now. Interesting information, thanks!

  • meg2016
    meg2016 Member Posts: 188
    edited October 2016
    Options

    reflect- your freak out sounds like mine. And when Google fails me, I sometimes I like to organize a closet or dresser, just to feel like I have control over something. My house has never been more organized. The kids and husband have learned to just leave me alone and let me sort stuff, its my form of therapy. Hope rads go well for you- I start this Thursday. Something new at least to focus on.

    My RCB is 3.69- they call that a 3, but to me thats looking a lot like a 4. I could feel dramatic shrinkage in the cancer bed in my breast during chemo, and MRI scans showed shrinkage, so that makes me think things were quite bad when I began treatment. So I probably should just clean out the 401K and start traveling now. Bali, here we come! Actually, I am kind of doing that, have two bucket list trips planned for next year, one just after radiation and planning one for summer.

    I will say, being on the more extreme end of this disease makes some things easier for me than others with a less advanced diagnosis. For example, maybe I am having side effects on Aromasin/Lupron, I do have some joint pain but I am just not too focused on it. And long-term there are side effects. But I have to be around for years before I can worry too much about osteoporosis or damage from radiation, etc. The longer term side effects just don't keep me up at night. Its the shorter term recurrence or spread that take up all my worry energy.

    I am also really struggling with what truly is evidence-based best diet for us. I have read Mediterranean, low sugar, carb, etc. Low inflammation diet makes logical sense. But also very interesting in the data on Ketogneic. I have a friend with a different cancer in a study on Ketogenic- its a hard diet to maintain. But if it works... if anyone has any studies they have stumbled across in their time with Dr. Google, would love to read more.

  • Houston2016
    Houston2016 Member Posts: 248
    edited October 2016
    Options

    Hi everyone, I recently had UMX on 10/5/16 and saw the PS office and the PA told me the pathology test came back with positive margin😢. She said to talk to the BS to be sure what they recommend to do next. Basically, PA told me the cancer cells were positive because it may went to skin. I'm devastated, does this mean the cancer is spreading during my neoadjuvant chemo and the four weeks between the chemo and surgery. How could this have happened? I never heard of RE-excision after a mastectomy before! I also blamed the BS for not cutting enough skin, thus leaving some cancer behind. Please let me know if anyone have similar situations. Thank You.

  • Houston2016
    Houston2016 Member Posts: 248
    edited October 2016
    Options

    Momoftwins, did you have clear pathology test after your mastectomy?. Mine came back positive bc the tumor was close to the skin. Is it possible the cancer was spreading during the neoadjuvant chemo?

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2016
    Options

    Oh Houston, I'm so sorry to hear this! My final pathology showed clear margins (smallest margin of 0.6 cm) so I was fortunate in that regard. And there was no evidence of spread to the skin, as I think mine was deeper.

    I'm not sure...it seems unlikely that it would spread during chemo (although I'm sure it does rarely happen). How were they monitoring your chemo response? Manual exams, imaging, both?

    I actually have heard of a few girls having to do a re-excision after their mastectomy for the same reason, but I don't know all of their details (but I do know they're doing well now!!)

    What are your docs saying? I know it's hard not to freak out, but this is going to be a surmountable (but sucky) bump in the road. Wish I could be of more help.

    Anyone out there who has had a similar experience as Houston that could chime in??

    Houston, hang in there. I hate cancer. I'm sorry you're so sad/scared right now. I'm always here if you ever need to talk.

  • ssinuk
    ssinuk Member Posts: 63
    edited October 2016
    Options

    The RCB score article is devastating. I must score a 4 with a 5x3cm tumour and 5 - 7 nodes after chemo. Doesn't look like I stand a chance by those stats. Ugh.

    Houston I'm so sorry for your trouble that's gutting. But 'just a geographical miss' as I heard one surgeon say - Ie not necessarily progression on chemo. Hope someone with a similar experience comes along to share some support. Thinking of you.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2016
    Options

    SSinUK,

    I'm so sorry the article I posted scared you!! Frankly, reading anything about cancer scares me. Ugh. I feel so bad; I just added it for Meg because she wanted more information on it and it was the most comprehensive article that explained it well. I only think there are 4 categories of RCB: 0, 1, 2 and 3. Anyway, I don't think it's the end all be all and there are so many other factors!

    And you do stand a chance!! There's so much more to this than a RCB score. I'm sorry again for posting it--was hoping to help, but maybe I should just delete it! Hang in there.

  • reflect
    reflect Member Posts: 280
    edited October 2016
    Options

    Meg, I wish I had your response to anxiety. I would love a tidy house! Let us know what you discover about diet. Is the ketogenic diet the one of Atkins fame? High protein low carbs? Mediterranean diet sounds good. Re: RCB, the formula they use is obnoxious (to me, I'm an word and picture person, not a number person). And Mom of twins, I'm confused as the chart looks like 0-4 but the text of the article says 0-3. Whatever. In any case I agree with you, Meg, completely, about being at the "extreme" end ...it does give a certain freedom and I am really reflecting on what's truly important now.

    SSinUK, we are not statistics. I found the article upsetting too (I found it on my own). I've spoken with the oncology social worker a couple of times since then and it's been really helpful. My perspective is changing. Why not go do something meaningful and joyous?

    Houston, I've heard of unclear margins with mx too. I would talk to your BS or MO about your concerns. I often have a million anxieties and concerns after getting news, can't process it when I'm in the office.

    Second rads this afternoon. So sleepy on the long drive home. Hope I can continue on my own. Starting back at work next week, whoo hoo!

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2016
    Options

    reflect, it is confusing. I could be wrong, but I think where you're seeing 0-4, it is showing the numerical value of the RCB index, which is on a continuum. But to my understanding, the categories are I-III, based on the numerical value.

    With that being said, I deleted my link above with that educational and frightening article, as I worry it upset some of you. I'm terribly sorry -- not my intention. We're all in the same boat, so none of us like reading it. It's easy enough to find if anyone wants to learn more through google.

    I try to remind myself that's it's arbitrary. So many women have surgery first, and they have no idea how their cancer would actually respond to chemo. Clearly, most wouldn't have had PCRs and so many are doing fine years later.

    It is hard to be in an intermediate or poor prognosis category, and it's hard not to envy those who have "cleaner" cancer, so to speak. All cancer sucks, but it just feels like mine and others is just messier....I'm sure some of you feel the same. There's always worse and there's always better, I suppose. The hardest part for me is having 4 little girls and praying so hard that I'll see them grow up. We all so desperately just want to be here.

    Anyway, I'm off to bed. Have to get up early tomorrow. Another day...one day at a time. 😊


  • Houston2016
    Houston2016 Member Posts: 248
    edited October 2016
    Options

    Thank you ladies for helping me stay positive. As I said, I got the news from the physician assistant of my PS. I supposed to follow up with the BS on Thursday. But honestly I'm not really interested in what he has to say, I had bad vibes from him in beginning, I'm sure he may be a good person. He doesn't seem to be attentive. How could he missed scaling all cancer cells when he already have me left breast ultrasound?I had consulted for second opinion with a surgical oncologist from MD Anderson back in July, she was detail in describing her surgery. For some reason I went ahead with this general surgeon and regretted my decision. I'm thinking of meeting up with the SO from MD Anderson and bring her all my uptodate records. As well as see the RO there, some how they're more proactive. What do you think about this?

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.