Wife was just diagnosed, pathlolgy comes tomorrow

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  • yeuker
    yeuker Member Posts: 24
    edited January 2016

    Hey BarredOwl,

    Asking if there is a board which reviews cases where she is being treated is a great idea. It may get us farther than just asking to see an oncologist in the next few days. I'll start right away with our PCP in the morning and go from there.

    Thanks,

    Cory

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  • downdog
    downdog Member Posts: 1,432
    edited January 2016

    Cory, asking lots of questions and being your own advocate/having an informed advocate will help ensure an optimal outcome for your wife. It sounds like she is at a downtown Winnipeg research hospital, which is great, as opposed to a smaller regional hospital. Neoadjuvant systemic treatment (chemo/targeted therapy/endocrine) is routinely employed in Ontario (I am in Toronto). CancerCare Manitoba will have clinical practice guidelines, so ask her PCP about these, as this info is not accessible to the public from their website (which is very incomplete and has poor usability). I would hope that they disseminate this info through restricted access to physicians. By all means ask the question about the tumour board at her hospital, but I would be surprised if they would discuss and review her case at this stage in time. Right now her care is being managed by the breast surgeon. I would suggest requesting a referral to a medical oncologist, optimally for a pre-surgical consultation. I had a very small, unaggressive cancer and am not considered young in cancerland (your wife is), but was assertive in requesting a referral to a MO and had a consultation 4 days after receiving my diagnosis. The Canadian healthcare system is overburdened, but you can receive timely, phenomenal care, especially when you advocate for yourself. Do your research, ask questions, speak up and choose great docs.

    There are lots of suggestions here for amassing and organizing files. We don't get deluged with paper, since we don't have to submit requests and evidence to insurance companies for our treatment. By all means request as much of her medical record files as you want, and use paper, digital (audio and images) storage - whatever meets your needs. In Canada our PCP acts as the central repository of our medical records. To my knowledge, PCPs do not send electronic records to patients, only to other providers within the healthcare system. Your PCP or specialist can print a copy of any files you wish to have. Digital copies of imaging are generally obtained through the imaging centre on digital media. As far as I know, patient portals at our hospitals are only for paying invoices for charges not covered by private insurance plans (many people have these paid by their employers), such as the surcharge for a private room. We do not see invoices for surgery, chemo, rads, Dr appointments etc, as this is all covered by the provincial health care plan.

    An MO could request HER2 testing of the biopsy sample. Clinically, her tumour is 2 cm and node negative. For IDC, there is less variability in the post-surgical pathological findings in tumour size than for lobular cancers. In the event that she is triple negative (TN), if she were treated with neoadjuvant chemo, it would be possible to assess whether she had a pathological complete response (pCR) from the surgical specimens, which is associated with superior disease free survival and overall survival, and most strongly so for TN, to a lesser degree for HER2+, and has the lowest correlation for ER+. One of the reasons for utilizing neoadjuvant chemo/treatment is to shrink the tumour, so that is operable or to derive a better cosmetic outcome. A 2cm tumour is not large. Since tumours are often histologically heterogenic, some docs wish to evaluate HER2 status post-surgically, since the biopsy sample may not be representative of the tumour.

    One week is a short timeframe for making a decision on lumpectomy vs mastectomy. She may already know what she wants, but I think it is a good idea to take more time to reflect on such a significant decision. Another possibility is to go for a lumpectomy and then make the decision about mastectomy or bilateral mastectomy at a later date, including reconstruction options – immediate and delayed. With rads as part of her treatment plan, that adds an additional complication, but with the right reconstructive surgeon, she can achieve great results. Ask for a referral to Dr Avi Islur for a consultation re reconstructive options, if reconstruction is something she wants to consider.

    Best of luck. She will be fine with you by her side!
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  • yeuker
    yeuker Member Posts: 24
    edited January 2016

    Downdog (and others),

    Thank you again for taking the time to provide such a thorough response. I spoke with the surgeons nurse today and was told that things vary greatly by location as you had mentioned. The nurse mentioned that in US and places like Ontario that preaduvent chemo is done more often. In Manitoba:

    - A HER2 test is not done on a biopsy, it is always preformed on the surgical sample (by always she means 99% of the time). The exception to this rule is if the surgeon thinks cancer must be dealt with by an oncologist prior to surgery (usually due to its size). She echoed what downdog said that the tumor is not large and the docs wish to evaluate HER2 status post surgically as it will be more representative of the original tumor.

    - An oncologist is not contacted, ever prior to surgery unless being referred to by the surgeon. I.e. Oncologists do not review biopsy samples in Manitoba. They are only ever referred to after surgery or in very rare cases when the surgeon elects to consult with them pre-surgery.

    You are correct the 1 week for mastectomy vs lumpectomy is very short. It is likely she will elect for lumpectomy and possible mastectomy with reconstruction at a later date. We have read that recurrence is the same with mastectomy vs lumpectomy? Thanks for the referral name on reconstruction.

    I am waiting to hear back from both our PCP and surgeon to discuss these things again. Hopefully they can help us have confidence in the treatment plan that has been suggested.

    I will strongly advocate to have us speak to a MO. Thanks again everyone!

    Cory

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2016

    Perhaps Canada is different but HER 2 status is usually done before surgery when ER/PR status is done.

    • A biopsy (no matter the type of biopsy) is a "surgical sample". Nothing is going to 'majikly' change on ER/PR or HER status. The 'original tumor' is what it is.
    • BC TX is a team effect! Basically, the Surgeon cuts, the Chemo Dr does Chemo and Rads Dr does rads. The plastic surgeon (if doing recon) also comes into play. They all have their specialities but all need to work together with the first and foremost - US. It is not just one more of them individually but working as a team for the best outcome for US.

    What other tests/scans have been done that do enter into the best TX plan? Oncotype, tumor markers, genetic tests which play into the best overall TX plan. Neoadjuvant (Chemo before surgery) Chemo has long been the SOP for IBC but for a while it has become more common with other types of BC, to shrink it and get better margins for better surgical results. Surgery is not always the best first option.

    Added: Her age and family history also comes into play.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Cory:

    If you are wondering about some of that additional information, please note that Oncotype DX for invasive disease is used in patients who are hormone-receptor positive and HER2-negative. HER2 status is unknown at the moment, but since your wife is ER negative and PR negative, she is not eligible for the OncotypeDX test and it would not be informative. (When eligible, it is typically performed on surgical samples.)

    http://breast-cancer.oncotypedx.com/en-US/Patient-...

    For information about genetic testing, a first step in the US would be to discuss family history and patient history with your team, and inquire about a referral to Genetics Counselor for a formal assessment. If testing is recommended, results may indeed affect ultimate surgical treatment choices.

    BarredOwl

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  • DeeRatz
    DeeRatz Member Posts: 350
    edited January 2016

    Cory-things here in Canada are a bit different. I have had all my treatments and surgery in Saskatoon. I was DX in May, had my surgery in June and had my first consult with the MO at the beginning of August. We don't generally meet with the MO before our surgery. I did have my Her2 status on my initial biopsy though. If I would have been triple -, they would have done chemo before surgery. I'm not understanding why they don't give you that result from your biopsy. This is a test that they would do in the Histology dept right at the hospital.

    My surgeons and treatment have been excellent here in Canada. It is nice not having to worry about the financial burden that many people on these boards have to worry about. I have had to pay $13 for my treatment for 1 antibiotic that wasn't covered. I did opt for the BMX as I didn't want to have to deal with another surgery later on. It is a personal decision, and I was able to have immediate reconstruction which made things less traumatic for me. I was 44 at DX and am just finishing up with my treatments. My husband has been super supportive as well as the community in which I live. These boards are a great source of information and support. I wish the best care for your wife as well.

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  • yeuker
    yeuker Member Posts: 24
    edited January 2016

    Again, thanks everyone. I spoke with the surgeon today and she will work to get us to see an oncologist pre-surgery and the HER2 done pre surgery. That being said, she said the HER2 status will not be complete before surgery next Wednesday which is odd because I am pretty sure they do them in Winnipeg.

    My dillemas are as follows:

    - If we speak with an oncologist, according to the surgeon, they will not know the whole picture pre-surgery (HER2 status) so will not be able to advocate for or against pre-surgery chemo.

    - If we push back surgery to find out HER2 status, it may need to be by up to 3 weeks which worries us because her cancer is aggressive and we want to start treatment as soon as possible. What would you do?

    - Is it really up to us to make the decision on neoadjuvent chemo or not? I'm half decent at research and understanding medicine but don't feel I'm prepared to make a decision on stakes this high.

    - Does anyone have actual survival stats for neoadjuvent chemo vs adjuvent chemo for tripple negative or HER2+ disease? Were it to be tripple negative or HER2+ what advice would you suggest we advocate for? (I know this is a very tough question but its the one we are faced with).

    We are in line for genetic testing but it could be 6-8 months before we speak with the team (yes, months). They say that usually only women under 35 get genetic testing but 'may' make an exception for us. In any case, we could be waiting on genetics for a long time.

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  • Kathy044
    Kathy044 Member Posts: 433
    edited January 2016
    yeuker you might like to read this BCO story posted on Jan 5th in Breaking News about timely treatment and survival. I think your wife has made a good decision about beginning surgical treatment with lumpectomy based on this study.

    http://www.breastcancer.org/research-news/timely-treatment-improves-survival

    Kathy (in British Columbia)
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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Cory:

    Here are some thoughts on your questions. The first two seem related:

    (1)- If we speak with an oncologist, according to the surgeon, they will not know the whole picture pre-surgery (HER2 status) so will not be able to advocate for or against pre-surgery chemo.

    (2)- If we push back surgery to find out HER2 status, it may need to be by up to 3 weeks which worries us because her cancer is aggressive and we want to start treatment as soon as possible. What would you do?

    Item (1) seems to imply that you could indeed consult with an oncologist before surgery.

    HER2 testing cannot be completed before the currently scheduled surgery date. True, but you do not need the oncologist to actually advocate for you by that date. You only want to ask if hypothetically they would so advocate, if the results were either status (a) ER-PR-HER2+ OR status (b) triple negative, in light of age, estimated tumor size, etc.

    If the oncologist would NOT so advocate in either (a) or (b), then such consultation would be confirmatory of surgery first, provide added confidence in your current treatment plan, and your wife may choose to go forward with surgery first as initially recommended by the surgeon. This is still valuable input, and limits second-guessing later.

    If they would so advocate: Would you feel comfortable waiting for results if the opinion was that only one of the possible HER2 statuses favored neoadjuvant treatment, meaning a [EDIT: reasonable] chance the test result would not change the current plan? Is the magnitude of the possible benefit or other value (see item (4)) enough for you to want to wait? Would the oncologist support or strongly urge you to wait for the test results? Does the oncologist think surgery first and neoadjuvant treatment are both reasonable options?

    (3)- Is it really up to us to make the decision on neoadjuvent chemo or not? I'm half decent at research and understanding medicine but don't feel I'm prepared to make a decision on stakes this high.

    Yes, but with expert advice to guide your decision-making. See above and below. You are doing a good job.

    (4)- Does anyone have actual survival stats for neoadjuvent chemo vs adjuvent chemo for tripple negative or HER2+ disease? Were it to be tripple negative or HER2+ what advice would you suggest we advocate for? (I know this is a very tough question but its the one we are faced with).

    I don't have substantive information for you, but you have received and will receive more valuable information from members here.

    There are only two hypothetical statuses for the oncologist to consider (positive or negative). In this situation, if it were possible as implied by item (1), I would personally wish to meet with the oncologist now to obtain case-specific, current, expert professional advice on these matters, in light of the available treatment options in Canada. In their professional opinion, in your wife's particular case, if they would advocate for neoadjuvant treatment for either HER2-positive or triple negative disease, then what is the potential survival advantage IF ANY of the particular suitable/recommended neoadjuvant therapy regimen(s)? Would potential information about tumor shrinkage of a ~ 2cm tumor with neoadjuvant therapy provide independent value for HER2-positive or triple negative disease? What is the quality of the data on these questions?

    This case-specific information could narrow the options to consider. You would have more expert information to help you decide your next step (test or proceed to surgery).

    These are just thoughts/ideas.

    BarredOwl

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited January 2016

    Adjuvant or neoadjuvant? I would be more strongly for neoadjuvant chemo if your wife were triple negative. With triple negative, chemo is THE systemic treatment, and neoadjuvant chemo can let you know whether the chemo is working for your wife. Your MO could monitor the changing size of the lump, and could change chemos if one regimen weren't working. If your wife were HER2+, I would worry less about chemo cleaning out her system because she has a few other helpful options (like Herceptin and Perjeta).

    Either way, because your wife's cancer is Grade 3, she would be a good candidate for chemo because chemo works best against rapidly dividing cells. Just my thoughts....

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  • yeuker
    yeuker Member Posts: 24
    edited January 2016

    I am very thankful for all the objective, intelligent advice on this board. Thank you.

    Her biopsy has been sent for HER2 testing and with some luck the MO may be able to expedite it. I will call him tomorrow if he does not call us first. I hope the results are in 'pre-tuesday' but not holding my breath.

    We are to meet with the MO Tuesday (day before proposed surgery). MO seems pretty highly recommended so we are happy to meet with him and looking for decent advice on course of treatment. Also, thanks for the 'you are doing a good job' comment. The best part of my day by a long shot is when I read that.

    C

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  • momof2doxies
    momof2doxies Member Posts: 342
    edited January 2016

    I have triple neg IDC and chose a mastectomy over lumpectomy. My first tumor was in the left breast and I had a lumpectomy followed by radiation. But 1 year later, I had a new cancer on the right side(trip neg). I did not want to expose myself to more radiation. Also if you have radiation before you elect a mastectomy , your reconstruction is more complicated due to the poor quality of the tissue that has been irradiated.


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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited January 2016

    I just wanted to add that when analyzing statistics, make sure you keep it clear in your head the difference between recurrence rates and survival rates. Providers often jump back and forth when quoting studies, and it's confusing.

    They are often different. In the case of mx vs LX + rads for example, survival rates are often the same, while there are some advantages, statistically, with mx, in recurrence rates. It's not usually a huge difference. But there are other things to consider, such as follow up care. More scans and potential biopsies, the more breast tissue is left. Certainly the option, if neoadjuvant is not chosen, to do an LX now for a quick surgical intervention, followed by the option to UMX or BMX, is a valid consideration.

    Best of luck, you are doing a great job advocating for your wife. I'm sure all of us here recognize the extent of your involvement is somewhat rare, and very comforting

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  • Paxton29
    Paxton29 Member Posts: 221
    edited January 2016

    Yeuker, I can't help with the medical part but I am sure your wife is so grateful for everything you're doing. I'm a lawyer, not a scientist, and when I was first diagnosed it was all a blur and a totally new language. Thank God my husband actually is a scientist (and the son of an oncologist), so he was able to read pathology reports and studies and explain things to me in a way I simply couldn't understand from anyone else. When I was frozen in fear he could get through. So keep doing what you're doing--your support will mean so much

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi Cory:

    I just edited my last post above, under question (2) to delete "50%" which could be totally wrong (see [EDIT: reasonable]). If only one status favored neoadjuvant therapy, the chance of having that status depends on the likelihood of HER2+ vs HER2- based on their relative frequencies among ER- PR- patients, which I do not know. If it becomes pertinent, you can ask the expert. Sorry for any confusion.

    Hoping for a productive session and clarity for you and your wife.

    BarredOwl

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  • yeuker
    yeuker Member Posts: 24
    edited January 2016

    Great point BarredOwl. Thanks for clairification.

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  • shorfi
    shorfi Member Posts: 791
    edited January 2016

    Like Momof2...I had ER/PR positive IDC back in 2004 and a new primary in my right breast in 2013 which was triple negative. In 2004 I had radiation also. I elected to have bilateral mastectomies when diagnosed the second time. I have beautiful results even though I had radiation so many years ago.

    I applaud you advocating for your wife. My PS said that my husband...who was always there for me...should teach a class on how to encourage and comfort their wives during such a scary time. I wish you both the absolute very best!!!

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  • yeuker
    yeuker Member Posts: 24
    edited January 2016

    Hey Everyone, figured I would provide an update. I'm sure I posted it this morning but somehow its not here :-(.

    So we got into see a MO on Tuesday and they did rush her HER2 test which was in for the time of our meeting. She is ER-, PR-, HER2+. We were told this is a good thing because it allows them more avenues of treatment. Because of the HER2+ pathology, we did not discuss what we would have done, had she been ---.

    The MO said that there is no compelling evidence that would lend her to suggest support for neoadjuvent vs adjuvent chemo. Preadjuvent chemo would require more chemotherapy and would have higher risk of permanent heart complications. Given the similarity in outcomes between the two treatment options, our surgery date scheduled for yesterday and the 'more chemo' and possible complications, we chose surgery before chemo. Surgery was yesterday (lumpectomy), went well and 3 nodes were removed. Chemo starts in 4 1/2 weeks.

    They will retest the surgical samples for ER, PR and HER2, test the nodes, and also do a CT of chest, abdomen, pelvis and bone scan (regardless of node results). Additional testing is in 2 weeks and we will have the results of surgery and CT/Bone scan prior to chemo. Thanks again for being such a great sounding board and fountain of information.

    Cory



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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2016

    Is an Oncotype being done and genetic tests?

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi Cory:

    I am very glad you were able to get the test results back and get the expert consult with the MO to inform and guide your decisions.

    Btw, I agree with kayb re Oncotype eligibility for invasive disease (done in invasive disease that is hormone-receptor positive and HER2-negative). At this point, your wife meets neither (ER- PR- and HER2+).

    I will be keeping you both in my thoughts for the best possible pathology and test results!

    BarredOwl

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited January 2016

    Hi Cory: I was diagnosed with ER-,PR-,Her2+ breast cancer 8 years ago. I had a single mastectomy (after 2 lumpectomies did not achieve clear margins), 6 treatments of Taxol/Carboplatin/Herceptin, and then Herceptin infusions every 3 weeks for a total of 18 (U.S. standard of care in 2008). I have had no lasting side effects and am doing well after all this time.

    Wishing you and your wife all the best, Sue

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  • yeuker
    yeuker Member Posts: 24
    edited January 2016

    Thanks everyone. As suggested earlier, oncotype would probably not benefit us given her pathology. We are in line for genetic testing given that my wifes grandmother, her grandmothers daughter (aunt), and my wife all have had breast cancer (3 generations, direct blood lines). This combined with her early age of diagnosis (37) make her a good candidate for genetic testing. We were told to not hold our breath and that we would likely need to wait for up to a year (yes, a year). Also we were told that they normally don't see any people over 35 but will likely see my wife. It would really help her sister who is clearly concerned as well... and our two daughters (5 and 7).

    Sue, thanks for your encouraging story. This stuff clearly pretty worrisome and I am lucky to have a wife that is so strong as it allows me to be stronger too. Stories like yours are encouraging for people like us. I do have a question, we are waiting for her to heal from surgery before chemo. If the margins are not clear, would they operate again and then wait again for chemo? I'm not sure how all that would work. Also worth noting that the MO said 12 months of herceptin not 18. One more question to ask next meeting.

    Good call on joining the treatment forum when she starts chemo. I'll suggest it :-)

    We are all really looking forward to some time away with friends and getting in some sun and relaxation. Only two days since surgery and my wife is going stir crazy. Its -23C here today (-9F) which is actually pretty nice for this time of year (no kidding)! Might get out for a walk.

    Cheers,


    Cory


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  • JGF
    JGF Member Posts: 1
    edited January 2016

    I was diagnosed with breast cancer in Feb of 2009. Mine was 6 cm, rather large. Anyway, my husband and I met with my surgeon who went over the test results and recommended a mastectomy of the right breast. Everything was happening so fast, I went through the surgery and recovery in sort of a daze. During the surgery they discovered some of my lymph nodes were involved, so they removed 17 lymph nodes, as well. When the surgery healed, I went on chemo, which lasted for about 8 months for me, as well as radiation for 33 days. Everything has since healed. I was put on Femara to suppress any estrogen. I have since had reconstruction and I am in very good health. I am 68 years old. Life will be good again for your wife. Don't fret over all this, just take one day at a time. Don't worry about tomorrow. I wish her and you all the luck!

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    DearJGF, Thanks so much for sharing your story. It means a lot to hear from you. Please stay connected to the community and keep posting. The Mods

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited January 2016

    Hi Cory -

    Regarding re-excision for inability to get clear margins: I had a lumpectomy which showed DCIS close to the margin. The re-excision again showed DCIS close to the margin, so I had another re-excision with the same DCIS results plus a 7 mm invasive tumor that had formerly not shown up on mammogram, sonogram, or MRI. My surgeon and oncologist both agreed that that is a very rare occurrence, and I was scared of any other cancer "lurking" unseen in that breast, so I chose a mastectomy with implant reconstruction at that point. Thankfully, the post-mastectomy pathology report showed "only residual cancer cells near the original lumpectomy cavity." Yes, I did have to wait to begin chemo until the mastectomy had healed - it was about 3 months from diagnosis to chemo.

    As for Herceptin - I meant 18 total infusions (counting those 6 given with chemo), so 12 months of Herceptin is correct.

    The 8 years since diagnosis have included retirement from 36 years of teaching, several family graduations, two daughters' weddings, two granddaughters, and much, much joy. Life is good!

    Sue

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