New to Breast Cancer

[FloridaMouse]

Dazed, lost and confused.   Diagnosed with DCIS on 7/11/11, scheduled for lumpectomy on July 29 with radiation to follow.  However, there is a chance I may not be a candidate for radiation due to auto immune disorder (rheumatoid arthritis) meeting with radiology oncologist on July 27.  So lost, don't know what to ask or look for.  I'm pretty medical savvy as I've already beat Leukemia and Hepatits C.

[ncmichigan]

I'm SO sorry to hear your disease is multicentric and bilateral mastectomy is being recommended. It's not recommended loosely and your doctors have your best interests at heart. Hopefully, you trust in their skill and care and will be able to come through everything. You're in excellent hands with Sue to help you along--she has an extensive amount of knowledge along with her personal experience and her caring heart. I'm sure it's all everwhelming right now, but just take one step at a time and try to stay positive, OK?
My thoughts and best wishes are with you as you take this journey one more time.
Sending you a big hug from Michigan (    ),
nc

[FloridaMouse]

Thank you again.  :-)

[SueYoung55]

It looks like you're getting answers. Feel free to call in the evenings if you need to talk or yell or cry or laugh. You're going to be fine, ok? :)

[FloridaMouse]

I've had my MRI and have seen the oncologist.   It appears that I have multicentric disease per the MRI.  The oncologist also felt that due to my past history of Leukemia that I am not a candidate for radiation as I may be setting myself up for myelodysplastic syndrome later on down the road.  He has recommended mastectomy as opposed to BCT.  I will be having them both removed.

[SueYoung55]

It was my pleasure. I've sent you a private message with some info. And as I get more I'll send that as well.

Best wishes :)

[FloridaMouse]

Thank you for taking the time to talk to me last night.  You taught me a lot ... this is a lot to take in.

[SueYoung55]

I'm going to private message you.

[FloridaMouse]

I'm actually supposed to call the oncologist tomorrow to get in with him before surgery.  I was fortunate that I already had established with an oncologist when I moved to this area 13 years ago because of my history of Leukemia.

O.k. so this HER2 thing has me a little spooked.  I've had a hard enough time trying to decided between lumpectomy and double mastectomy (if they are gonna take one I want them to take both).  Is it normal for them to move so quick to the operating room after diagnosis?  I just got my results 6 days ago.  And of course, as insignificant as this sounds... my husband and I have airline tickets to fly to Ohio on 8/11 for a family reunion.

Sigh.

[SueYoung55]

You're positive all the way around the board I see!

I was hoping you would say negative on the HER2 status.

This is from the Mayo Clinic website:

HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. In about 1 of every 5 breast cancers, the cancer cells make an excess of HER2 due to a gene mutation. This gene mutation and the elevated levels of HER2 that it causes can occur in many types of cancer — not only breast cancer.

HER2-positive breast cancers tend to be more aggressive than other types of breast cancer. They're also less responsive to hormone treatment. However, treatments that specifically target HER2 are very effective. They include:
Trastuzumab (Herceptin). Trastuzumab, which specifically targets HER2, kills these cancer cells and decreases the risk of recurrence. Trastuzumab is often used with chemotherapy. But it may also be used alone or in combination with hormone-blocking medications, such as an aromatase inhibitor or tamoxifen. Trastuzumab is usually well tolerated, but it does have some potential side effects, such as congestive heart failure and allergic reaction.
Lapatinib (Tykerb). Like trastuzumab, lapatinib is a HER2-specific drug. Lapatinib may be effective for HER2-positive breast cancer that doesn't respond to trastuzumab. Lapatinib is used in combination with the chemotherapy drug capecitabine (Xeloda) and the aromatase inhibitor letrozole (Femara). Lapatinib is also being studied in combination with trastuzumab.

In addition, standard chemotherapy agents such as doxorubicin (Adriamycin) can be effective in treating HER2-positive breast cancers, although these drugs don't specifically target the HER2 protein.

Routine testing for HER2 is recommended for most women diagnosed with breast cancer because the results may affect treatment recommendations and decisions. Whenever breast cancer recurs or spreads, the cancer cells should be retested for HER2 as well as for hormone receptor status, as these can change from the original cancer in up to 20 to 30 percent of cases.
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Please discuss this with your oncologist. You mention that you're scheduled for a lumpectomy but not that you've met with an oncologist. I'd do that ASAP before any other treatment/surgery and along with all doctors at once if possible to formulate a plan of action. One that will work for you and one that you can tolerate considering your autoimmune system. When a cancer is HER2 positive it's really REALLY worth considering chemo along with Herceptin. Really. I wish you all the best in whatever choices you make. Please let us know what you decide along with your oncologist. We're here to help in any way we can even if it's just to offer support. :)

[FloridaMouse]

Just looked at the path report and it says  HER2 (HER2 by IHC with quantatattive image analysis) Positive (3+).  When I had my hysterectomy the did indeed remove my ovaries.  I took Estadiol vaginal cream for approximately 4 weeks (right before the mammo of all times), and about 6 months of Premarin 11 years ago right after the hysterectomy. That is the extent of my HRT.  I'm 51.

[Tinabudde]

Hi Florida, Between now and your appointment I would really research your options, 5mm is generally pretty small most likely a stage 1, but the liver problems you really need to talk to the oncologist about chemo.  From looking at your stats estrogen is more than likely causing trouble, they may put you on some sort of hormonal treatment.  I take lupron, my mother takes anastrazole, it just depends on your age as well.  Was the hysterectomy including ovary removal?  Sometimes the surgeons don't take them because they feel the risk for osteopororis could be a problem.  Let us know how you make out.

[SueYoung55]

Yes, absolutely it is fueling this disease. Estrogen is produced by ovaries, adrenals and also sadly, body fat seems to be a problem. They will most likely have you go on an aromatase inhibitor to block estrogen. You haven't been on HRT have you?

Was there any comment about HER2 being positive or negative?

Best wishes :)

[FloridaMouse]

I do see on the path were it says Estrogen 99% and Progesteron 77%.  I'm assuming that these to hormones are influencing the growth?  I had a hysterectomy 11 years ago.

[SueYoung55]

Sorry.. meant the specific parts of your path report. ER, PR and Her2 status :)

[SueYoung55]

I don't know anything about cirrhosis of the liver so I'll not comment on that part of your post.

5mm is indeed a very small mass and if the MRI shows that this is the extent of your issue then you are extremely fortunate that this was caught that early. Have you received the pathology report yet? Please let us know how your appointments go.

Best wishes.

[FloridaMouse]

If I'm reading the pathology report correct it looks like the area is about 5mm.  My PCP sent me some stuff to look at that is a little more informative than the generic brochures they give you for this stuff.  I'm pretty gifted in the bust are (D cup) so I'm assuming that 5mm for my breast size isn't all that bad?  I have a bilateral breast MRI coming up on the 21st, meeting with the radiology oncologist on the 27th and have yet to get the appointment with the oncologist set up.  The other issue I'm dealing with is that my Hep C left me with cirrhosis of the liver and should this breast cancer come back when all is said in done, if I wind up on chemo I have fears that it may do in what's left of my liver.


Thanks

[ncmichigan]

You've been through a lot already and it seems like you're a very strong and positive woman. My hope is you'll be able to get through this, too, as many women have. You didn't say how large your area of DCIS is but the lumpectomy shouldn't be too bad. I've had three excisional biopsies, two that included two areas, and none was as bad as I thought it would be. I even went dancing the evening after one, so I hope yours is smooth and uncomplicated. Your surgeon should be able to answer any questions you have about the procedure and the radiation oncologist should explain everything regarding that. I would recommend you write down questions as they come to you, because it's easy to be overwhelmed at your appointments. It's also best if you can take someone close to you with you because it's easy to not hear all the information when the discussion is cancer and its treatment.
I know it's easier said than done, but please try to stay positive and take one step at a time. I'll be thinking of you and wishing you all the best.
Hugs,
nc

[SueYoung55]

Best wishes!

[japdip]

It isn't common to NOT have Radiation with RA. Some will recommend that you stop your RA meds during treatment but even that is NOT always the case. I'm sure your Radiation Oncologist will clear this up for you when you meet. In days past that was true about Radiation & RA but not much now. Everything of course depends on your individual case and the Radiation would not be done until healing has taken place after your lumpectomy. Regards...