Just diagnosed this morning - can anyone advise please.

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Nonkyboy
Nonkyboy Member Posts: 8
edited June 2017 in Just Diagnosed

Hi ladies, I have been hovering around these pages for a few days while waiting for my biopsy results to come in and hoping I could leave as quietly as I came. Unfortunately I am joining the group. My pathology report reads as follows:

The core biopsies of breast tissue show invasive ductile carcinoma NOS with foci of intermediate and high grade ductal carcinoma in situ. Invasive carcinoma comprises moderately pleomorphic cells with focal tubal formation associated with desmoplastic stroma. Mitotic figures are infrequently identified. Grading is suboptimal on core biopsies; however, the appearances are of a grade 2 carcinoma ( tubules 3/3, nuclei 2/3, mitosis 1/3). There is lobular involvement. Myoepithelial markers (p63,SMMHC) confirm the presence of myoepithelial cells around the lobules and areas of of carcinoma in situ. Carcinoma in situ shows cribriform and solid patterns. There is no vascular invasion in these section.

HORMONE RECEPTOR STUDIES

OESTROGEN RECEPTOR - Positve

% positive nuclear staining - >95%

Intensity of nuclear staining - 3+(strong)


PROGESTERONE RECEPTOR - Positive

% positive nuclear staining - >95%

Intensity of nuclear staining - 3+ (strong)


HER2 OVEREXPRESSION

HER2 ( Vantana 4B5 ) - Equivocal

Membrane staining score 2+ (>10% weak/moderate incomplete membrane staining)


Comment - INVASIVE DUCTAL CARCINOMA AND DUCTAL CARCINOMA IN SITU


I SEE THE BREAST SURGEON IN 6 days and was wondering if any of you ladies would have ideas on what she may suggest as treatment and also what questions I should have ready to ask her. I'm 53yo and perimenopausal. I have beaten thyroid cancer and I will tackle this too. I am raising my three young grandchildren who are aged 16/12, 2yrs and 2 months and the eldest justturned 3years.

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  • 2westies4me
    2westies4me Member Posts: 5
    edited June 2017

    I was diagnosed in December of last year and am triple positive.

    My surgeon recommended a lumpectomy which I chose and then had 6 rounds of TCHP (last one is next monday....yay!) I will continue Herceptin and Perjeta for a full year.

    You've got this!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    NonkyBoy - sorry you find yourself here. There are forums for DCIS and for IDC and for hormone positive and for HER2+ and for ILC. The treatment could be anything from LX w/radiation on up. Since you're HER2+, you'll likely have neo-adjuvant chemo before surgery. Just dive in with your reading, but stay away from Google. This is a safe site, as is NCI or a large teaching hospital like Mayo Clinic.

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  • Nonkyboy
    Nonkyboy Member Posts: 8
    edited June 2017

    Thanks 2westies4me and MinusTwo. I have no idea what some of those abbreviations mean. Is there a link to find out please?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    Yes ma'm. Go to active topics on the left and when you scroll down, the first section is for new members.

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  • KathyL624
    KathyL624 Member Posts: 217
    edited June 2017

    Are they doing a FISH test for the HER2? A score of 2 is equivocal and warrants further testing

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  • Nonkyboy
    Nonkyboy Member Posts: 8
    edited June 2017

    hi kathy, I only saw my GP today and will see the breast surgeon on Wednesday so I'm assuming she will irganise further testing. The GP faxed the results to her so hopefully she has a plan in mind when I see her

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  • Nonkyboy
    Nonkyboy Member Posts: 8
    edited June 2017

    Thankyou x

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    Because you are HER2+, you should also meet with a medical oncologist at this time. Often chemo before surgery is the best way to go to treat that.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited June 2017

    Nonkyboy, typically, when women have both IDC (invasive ductal carcinoma) and DCIS (ductal carcinoma in situ) the treatment options are focused on the IDC. Anything that will address the IDC portion of your tissue will also address the DCIS portion, so don't worry as much about finding information solely on DCIS and how it's treated. Your treatment will be tailored to you, your specific bc characteristics (grade, stage, er/pr/her2 status etc) as well as genetics, age, other medical conditions/history as well as your preferences. The information on these boards can help you think through which options appeal to you, as well as help you form a good list of questions for your providers.

    You will want a team of providers, and you may seek more than one opinion to be sure you have a good fit. In addition to a surgeon, you'll want to meet with an MO (medical oncologist) who will be making recommendations about neo adjuvant or adjuvant chemo (before or after surgery), targeted treatment (for example Herceptin and/or Perjeta for HER2 overexpression) and/or hormone therapy (like Tamoxifen or an AI) as well as an RO (radiation oncologist) who will make recommendations about rads. You may or may not also want a PS (plastic surgeon) on your team depending on your initial surgery (lx vs mx) and if there is any reconstruction. You may start to think about whether you have good local access to specialized providers or whether you'll want to travel for some of your treatment. It is a lot to think about. Take your time and make sure that you're understanding the information given to you and that you feel good about your treatment plan.

    You can do this! You have great support here. Warm wishes and gentle ((hugs))

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  • Nonkyboy
    Nonkyboy Member Posts: 8
    edited June 2017

    Thankyou for your reply MTwoman. That all makes good sense to me. I do have a lot of other medical problems so it does complicate things a bit as they can't be compromised either. I am making an appointment with my cardiologist today as I'm sure they are going to want updated testing prior to surgery. He will do all those for me. I will also make an appointment with my Thyroid cancer specialist to see what her thoughts are. I feel a bit better today about things and I think I'm over the initial shock. I am a fighter an have been through many surgeries and illnesses so I can do this too. I appreciate you taking the time to address my concerns. The waiting game is definitely the hardest. Once I have a plan in place I will be fine. Blessings x

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  • Nonkyboy
    Nonkyboy Member Posts: 8
    edited June 2017

    Thankyou MinusTwo, I have no idea how to go about doing this. There is a cancer centre attached to my local hospital but I'm sure I would need a referral. My problem is that my GP is away until the middle of August having a hip replacement so I'm seeing random Drs that I don't know and that don't know me to get these referrals. I will see what this breast surgeon suggests on a Wednesday and ask her about an oncologist. Seem like I will be needing even mor specialists in my life than I have now.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Nonkyboy your cardiologist will be extremely important. If you are HER+ the he/she will need to be involved with that treatment.

    As far as your thyroid cancer specialist absolutely needs to be aware. I don't have thyroid cancer but I have an under active thyroid and my doctor has been monitoring and adjusting meds as needed.

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  • Nonkyboy
    Nonkyboy Member Posts: 8
    edited June 2017

    Ohthanks Kira, I wasn't sure if I was going over the top with checking in with them all but I have so many specialists and they all treat differently so I think they should be aware. The other thing I have is a compromised system already as I had a hip replacement 15 months ago that resulted in a major infection and three further surgeries. I am still on antibiotics and no sign of coming off them any time soon. So infection control will probably need a call too as well as my orthopaedic surgeon. They all cost money unfortunately and I don't have much of that!

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Hugs nonkyboy so much going on. You definitely need all involved. Your health is very important. I don't know your age but that's something to consider as well. I'm 64 now I'm not going to be as aggressive as I'd be if I was younger with children still at home.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    Nonky - I'm not sure a GP is appropriate at this stage. You can probably get a referral to an oncologist from the breast surgeon. Also since you already have relationships, talk to you cardiologist & thyroid doc. And last but not least - make sure all of these docs know that you are still on antibiotics after 15 months. That certainly has made changes in your immune system.

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  • Nonkyboy
    Nonkyboy Member Posts: 8
    edited June 2017

    Thsnks for the info minusTwo. I will be seeing the surgeon on Wednesday so I will ask about the oncologist and give her a full outline of my history. I am 53yo but raising three of my grandbabies aged 1,2 and 3 so I need to beat this. My immune system is definitely compromised as I pick up everything going which I never did before. I'll be making appts with cardiologist and thyroid doc tomorrow and filling them in. Enjoy your day

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  • Auntmad
    Auntmad Member Posts: 10
    edited June 2017

    your diagnosis sounds similar to mine. I have had a lumpectomy and a sentinel node biopsy. I am2 1/2 weeks into radiation . I will have 6 1/2 weeks in total. It's not fun, but it's not the worst thing I've endured in my 66 yrs. Talk to others around you. They are there. Join a group if you have one available. Take naps if you need one. Eat healthy food. Use the creams. Wear soft clothes and no bra ( hard for me as I'm very busty). Do nice things for yourself when you can. Do stretches, walk, laugh, meditate..

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