Wife Recently Diagnosed - Thoughts on Treatment

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wifeismyhero
wifeismyhero Member Posts: 2
edited April 2016 in Just Diagnosed

Hello,

My wife was recently diagnosed with IDC in right breast and node, stage 2, grade 2-3, ER+, PR+, HER2 pending. She is 38 years old and very healthy otherwise. Met with surgeon who would like to use neoadjuvant treatment. She will undergo chemo immediately, followed by surgery and then radiation. Curios to hear thoughts from others who had chemo first and how this process has worked for them. Thanks



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

    Hi wifeismyhero, and welcome to Breastcancer.org!

    We're so sorry for the reason that brings you here, but really happy you found us. Our Community is an amazing and supportive resource, and you're sure to get lots of great help here.

    While you wait for the responses of our many incredible members, you may want to also check out the For Caregivers, Family, Friends and Supporters forum, especially The Husband's Corner thread, where you can get support as the loved one of a patient.

    We hope this helps and look forward to hearing more from you soon!

    --The Mods

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

    Has she met with her Chemo Dr (MO) and Rads Dr (RO) yet? TX is a Team effort - not all 3 'working' totally 'alone'. Has she asked about a port for infusions? What Scans/tests (MRI/CT, PET, Bone, MUGA/EKG, etc.) are scheduled before Chemo?

    Neoadjuvant chemo has been SOP for IBC (Inflammatory Breast Cancer) but is becoming more common for other types. The idea is that it will 'atttack' the cancer to get it to shrink and form 'good' margins for better surgical outcome.

    My experience with neoadjuvant Chemo was for IBC, not IDC. IBC developes differently as it forms in 'nests' or 'bands' so neoadjuvant is needed to get 'it' to form into a 'lump with margins. Most who do neoadjuvant Chemo will do 2 different types of Chemo before surgery but not all - some of us do both neoadjuvant and adjuvant.

    For me, my surgeon flattly stated that he would not do surgery without neoadjuvant Chemo first. I started getting response with DD A/C (Dense Dose Adriamycin/Cytoxan done every other week) almost immediately. When I had finished my 4 A/C, my Drs wanted to do surgery - so 2 weeks after last A/C I had a UMX and 3 weeks after UMX, I started 12/weekly Taxol. That was 6 1/2+ years ago and I'm still NED (No Evidence of Disease). I can speak about the experiences of those who are IDC and do neoadjuvant Chemo but there will be those who come and can.

    There is no way to know how she will react to Chemo - rather it is neoadjuvant or adjuvant. We are each so unique and our bodies react differently. For me, A/C did not slow me down at all but Taxol completely EXHAUSTED me. But that is all in the past, I do it again in a heartbeat IF needed. For others, it is the other way around, A/C nasty and Taxol not nasty. There are other Chemo that I do not know anything about other than what I have read.

    Just my experiences - others will have their experiences to pass on.

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

    She should also ask about genetic testing.

  • CJSharma
    CJSharma Member Posts: 464
    edited April 2016

    I'm IDC ER/PR + Her2 - and strictly due to the size of my tumor my oncologist and surgeon suggest neoadjuvant chemo. The idea is to shrink the tumor so that we have a shot at a lumpectomy. It seems to be working. I am a week out from my second treatment.

    That being said, don't be afraid to get a second and third opinion. This is her life and your wife (you are very sweet - I'm so happy she has you!) She has the right to as many opinions as she wants and to go with the team that makes her and you the most comfortable.

    Best of luck to her and to you. I swear this phase is one of the hardest - up until the decision is made, then it seems to get easier as you have a plan of attack.

  • Jacklin
    Jacklin Member Posts: 162
    edited April 2016

    Hello, my triple negative tumour grew from a small pea to larger than a baseball in less than 3 weeks so I was prescribed neo-adjuvant chemo first and had a good tumour response to the chemo. I will be having surgery next week followed by radiation. I won't know the exact result of the chemo until the pathology report is ready. things seem to move much slower here in Canada, I have to wait 2 - 3 weeks to get those results.

    Waiting is very difficult - get as much information as you can from the right sources, this forum has been wonderfully supportive and a wealth of information. We found it was very helpful to take a tape recorder into our meetings so that we didn't have to take notes and could listen to what was said as many times as we needed to.

    Wishing you all the best and good for you for finding us and for posting. She is a blessed woman to have you as her husband.

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

    Hi!

    I had chemo first. What was nice about neoadjuvant chemo was watching the lump shrink and knowing that the chemo was killing the cancer. After five months of chemo, all of my active cancer was gone and I was able to have a lumpectomy instead of a mastectomy.

    Chemo works best on cancer that is replicating quickly. (Mine was Grade 3.) You say that your wife's cancer is Grade 2-3. That means it would probably respond better than cancer which is Grade 1.

    You also say that one node tested positive for cancer. My advice there would be to make sure that her doctors mark that node BEFORE neoadjuvant chemo. Maybe, they can insert a tumor marker (?). My surgeon didn't, and since the post-chemo MRI and PET scan indicated that my nodes were clear of active cancer, no one knew which node had been compromised prior to chemo. So my idiot surgeon ended up taking out ALL 20 of my Levels 1 and 2 lymph nodes. (Ugh. I am lucky that I didn't get lymphedema.) If my surgeon had inserted a tumor marker, he could have taken out ONLY the previously-compromised node and a few of its neighbors. Your wife should want to minimize the number of nodes removed. So, before she agrees to neoadjuvant chemo, she should make sure that her doctors have "marked" the compromised node.

    Best wishes, and insist on a second opinion if you don't feel comfortable with your wife's doctor's opinion.

  • wifeismyhero
    wifeismyhero Member Posts: 2
    edited April 2016

    Wow! Thank you all so much for the information. Surgeon did not even want to order scans other than a breast MRI, but we talked him into a scan. They put in for a PET but insurance rejected so she will have a CT instead.

    We just met with the MO today and the RO is Monday. They are cramming everything in as there is a multi-disciplinary conference on Wednesdys where our three primary docs meet with a number of other docs and discuss all of their active cases. So we will be getting a number of opinions. She is HER - and they will begin with AC followed by T. She will also have genetic testing done during chemo.

    Elaine - interesting thought on the marker. I know they inserted markers on the tumors and the node when they biopsied them. I assume that serves the same purpose?

    Again, thanks all for your feedback and I'm glad to hear that the responses all seem rather positive in regards to this treatment! Best of luck to all of you in your battle!!


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

    wifeismyhero,

    It is common to place markers in the breast to alert the surgeon to the location of the tumor; it sounds like they did the same for the compromised node. My radiologist didn't mark my node because he used a fine needle biopsy to check it out. Sounds like you guys are all set! Yeah, insurance companies are not too thrilled about paying for PETs. A CT scan should do the trick. Best of luck with the tumor board! Hope they create the appropriate plan for your wife.

  • windingshores
    windingshores Member Posts: 704
    edited April 2016

    I am assuming your wife is using a really good cancer center, since there is a tumor board. That is great that the board is meeting.

    I don't know how large your wife's tumor is or how responsive to estrogen and progesterone.

    In recent years not everyone with a positive node has chemo so there must be a reason they are going with neoadjuvant in this case. Size of tumor and desire for lumpectomy? Others know more about this.

    There is a test called an Oncotype test that often determines treatment but it is usually done after surgery. It is done for HER2- and ER+ PR+ tumors. A low score means no chemo, a high score means chemo, and medium scores are murky. I was told that 30% of grade 3's have low Oncotype scores and don't need (or won't benefit from) chemo.

    If your wife wants a lumpectomy the plan you described is probably the best way to go. It will certainly be reassuring if it shrinks the tumor. Then surgery, radiation, and most likely hormonal treatment such as Tamoxifen over the longer term.

    Sounds like she is in good hands. So sorry you are dealing with this. But things can work out, as many on here will tell you. This period really is the worst.

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

    The Facility she is going to should also have a BC Nurse Navigator who will be there to help along the journey and can be talked to about all sorts of concerns. There should also be a Nuititionalist to talk with.

    Before starting Chemo, she should get a 'class' (individualized one on one, not a group) with one of the Chemo RNs for education. Mine were immediately before first neoadjuvant A/C was an hour long. The one before first adjuvant Taxol was about a 1/2 hour. A lot of great info is given then and I was given a notebook that had so much 'general' Chemo info but also info on each of the drugs used during Chemo. There will be more than just the Chemo.

    It would probably be a good idea to ask the Nurse Navigator about the "Look Good - Feel Better" class if they have it at the facility or at the local ACS. It is a class (through ACS) designed for those going through Chemo to give info on dealing with makeup, skin care, wigs, etc. There are a lot of 'things' that are taught (one thing comes to mind is how to use an eyebrow pencil to make eyebrows appear 'usual' once hair 'leaves' after starting Chemo.

    I don't know your situtation , but if needed her facility may have wigs available. My Nurse Navigator gave me a really cute wig but when Hub y and Son (adult) saw it on me, they broke out laughing - I have to agree - as cute as it was it wasn't 'me' at all. So I took it back to the Look Good Feel Better class and there was a lady there who it was perfect for so she went home with it. At that class, I still had my hair but the Hairdresser who was doing it told me that she had a wig that a name manufacturer had sent to her that she thought would be great for me and to come to her salon the next day. She was right - I went home with with it. I also got another wig that VA got for me - so I could go with my longer wig or my short wig depending on my mood at the time.

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