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Topic: Need your advice

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Aug 1, 2019 03:37AM - edited Aug 1, 2019 03:38AM by Ann_James

Ann_James wrote:

My mother was diagnosed with infiltrating ductal carcinoma in the left breast with possible involvment of axillary lymph nodes . It's multicentric , grade 2 . Positive for both hormone receptors , still waiting for her2 results by FISH . The doctor recommended waiting first for the results of the this test and based on it will start treatment first or surgery first . Got a second opinion which said that surgery is preferred to be first . I'm confused now as what we must do first . Secondly , the other doctor said the treatment might be complete mastectomy with lymph node dissection , chemo , radiation and hormonal , while the first said that if her2 is negative then surgery and hormonal only . The first doctor is making things seem easier but i'm worried and more terrified as treatment is delayed because of that test . Any help will be appreciated .

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Aug 1, 2019 09:14AM DorothyB wrote:

It won't take very many more days to get HER2 results. They are important - HER2 positive will mean that you will most likely need chemo.

Lymph node will definitely need to be checked and the results of that will also impact need for chemo.

I had IDC but HER2 negative and lymph node was fine, so surgeon, 2 radiologist oncologists and 1 med onc didn't think I would need chemo. The other med onc said I might and ordered the oncotype test. Results were just a bit above borderline which caused both med oncs and the 1 rad onc that I was still seeing to all say that I need chemo after all, but I am opting out of chemo.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Aug 1, 2019 09:31AM - edited Aug 1, 2019 09:34AM by Beesie

Ann, I'm sorry that your mother has been diagnosed.

Reading the recommendations you've received from both doctors, it appears that both are wrong, although the first doctor is less wrong.

The first doctor is right that you should wait till the FISH test is back to determine HER2 status and whether surgery should be first or chemo should be first. I don't know large your mother's area of cancer is, but with possible nodal involvement and with the tumor being multicentric, it makes sense that chemo might be done first, particularly if the cancer is HER2+.

The first doctor is wrong in saying that if the cancer is HER2-, then treatment will be surgery and hormonal treatment only. Maybe that turns out to be the case, but it's too early to know that. Since your mother's cancer is multicentric, I am assuming that there is no question that a mastectomy is required. In that case, radiation may or may not be necessary. Rads usually isn't given after a MX, but is given if there are many positive nodes, if the tumor is very large and/or if the surgical margins are close. So until the surgery is done, it's impossible to know if rads will be required after her MX. As for chemo, if there are several positive nodes, or if the Oncotype score is high, then chemo will be recommended. The Oncotype test is 21-gene assessment of the breast tissue which determines the aggressiveness of the tumor and whether chemo would be beneficial or whether endocrine therapy alone (anti-hormone therapy) is recommended. The Oncotype test is used only for ER+/HER2- tumors that are larger than 5mm. It can be used for either node negative or node positive cancers, but if many nodes are positive, most Oncologists will skip the test and recommend chemo.

The second doctor is wrong in saying that the treatment will be mastectomy with lymph node dissection , chemo , radiation and hormonal whether the cancer is HER2+ or HER2-. First, as mentioned earlier, it won't be known if radiation is required after the mastectomy until after surgery. Second, if the cancer is HER2+, one additional treatment will be on the list, which is Herceptin. Third, if the cancer is HER2-, then there are lots of possibilities as to what the treatment might or might not be, as noted in the paragraph above.

Now the most important question. Are these doctors surgeons or medical oncologists? Surgeons operate; medical oncologists recommend the entire treatment plan. A surgeon is out of his league talking about any of these other things, and while many surgeons will be correct in what they say, they are not the experts on radiation or chemo and they aren't the ones who recommend these treatments to patients; it's the Medical Oncologist, and for radiation, the Radiation Oncologist. In many cases, with early stage cancers, the patient may not see the MO until after surgery - because in those cases it's clear that surgery should be the first course of action. But in your mother's case, it's not clear whether surgery should be first, or chemo (if HER2+). Even if her cancer is HER2-, depending on the size of the cancer, it might be recommended to have chemo first to shrink the tumor before surgery. So your mother should be seeing a Medical Oncologist prior to making any decisions about treatment, including surgery.

Hope this helps. And wishing your mother the best possible pathology results!



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 1, 2019 10:26AM DogMomRunner wrote:

Hi Ann - sorry your mom is going through this. DorothyB and Beesie are correct that the HER-2 status is important. My HER-2 was equivocal on the first test but positive with the FISH. I have had lumpectomy, in the process of chemo and will have radiation therapy.They are also both right in that the doctors cannot make a treatment determination until they get all the information. Good luck to her and the family.

You ain't run far enough to say My legs have failed You ain't gone far enough You ain't worked hard enough You ain't run far enough to say It ain't gonna get any better. Nathaniel Rateliff Dx 4/24/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/8 nodes, ER-/PR-, HER2+ (FISH) Surgery 5/16/2019 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 6/5/2019 Herceptin (trastuzumab) Chemotherapy 6/5/2019 Taxol (paclitaxel) Radiation Therapy 9/22/2019 Whole-breast: Breast
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Aug 1, 2019 10:37AM - edited Aug 1, 2019 10:46AM by Ann_James

  1. Firstly , I want to thank you all for your reply .

My mother saw 2 medical oncologists , but no radiologists or surgeons yet . The cancer is as I said earlier multicentric but I asked the second doctor and he said they were small , size couldn't be identified in either the mammogram or the ultrasound only multicentric is written . In my country FISH test takes a month to be done so this waiting time is worrying us . I also had a question if treatment is done first and the tumor did shrink , is it possible to have a much more conservative surgery rather than mastectomy ?

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Aug 1, 2019 11:34AM Beesie wrote:

Yes, it may be possible for your mother to have a lumpectomy rather than a MX if the tumor sizes are small or if they shrink from chemo. With a multi-centric cancer, the issue will be how far apart the tumors are.

What country are you in?

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 1, 2019 11:39AM Ann_James wrote:

I'm in Egypt .

First diagnosis was done 2/7/2019 , and FISH test is supposed to be 14/8/2019 , is this delay time very bad for this stage of cancer ? What can we do ?

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Aug 1, 2019 12:02PM DorothyB wrote:

It was 6 weeks between diagnosis and surgery for me. (surgery was my first treatment) While part of me wishes I had started sooner, I believe that it didn't negatively affect the outcome.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Aug 1, 2019 01:32PM - edited Aug 1, 2019 01:35PM by Ann_James

If mastectomy is done , what are the choices for reconstruction ? One doctor said that if she needed radio and had silicone implant it will sort like dry out causing infection or may hide cancer cells , what is right ?

My mother's main cause of cancer is the prolonged use of oral contraceptives. The hormone receptors are very high . I wish she could have hormonal therapy only and no chemo or radio .

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Aug 1, 2019 08:36PM WC3 wrote:

With HER2 positive IDC, neoadjuvant chemotherapy, that is, chemotherapy before surgery, is preferred at many facilities.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Aug 2, 2019 12:50AM AliceBastable wrote:

Ann_James, please try not to find anything to blame for your mother's cancer, particularly anything she may have (or have not) done. I only took contraceptives for one year, half a century ago. I had estrogen-based endometrial cancer in 2008, which led to a very thorough hysterectomy and NO hormone replacement. Surprise, in 2018 I got hormone-based breast cancer, very high percentages. Some of us crank out estrogen for absolutely no reason. Blame only makes people feel worse.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Aug 2, 2019 05:06AM - edited Aug 2, 2019 05:11AM by Ann_James

I have more questions (sorry)

1. If it turned out to be her2 negative , is there any chance that treatment will be hormonal only ? When can this happen ?

2. If reconstruction with silicone implant was done immediately after mastectomy and then radiation was needed , do they dry out or can hide cancer cells ?

3. One doctor worried my mother saying that taking a biopsy led to spreading of cancer cells and that surgery should be followed immediately , he is wrong , right ?

4. Emotionally , how to take care of my mother during this time ?

5. I'm afraid of lymphedema development , how can we prevent it , she is a housewife and uses both her hands quite often in lots of things , I don't want to see her unable to do what she is used to do .

6. Is it possible that the enlarged lymph nodes that appeared on ultrasound be reactive or any thing else rather than metastatic ? During this time she could feel a swelling after that no swelling under her arm could be felt , she told the doctor he said that was good but didn't comment further than that .

Thank you all for your responses .

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Aug 2, 2019 08:35AM Beesie wrote:

Don't be sorry for having questions. It's much better to be prepared!

1. If it turned out to be her2 negative , is there any chance that treatment will be hormonal only ? When can this happen ?

Yes, absolutely. If HER2-, then after surgery (usually either a MX with or without Rads, or a Lumpectomy with Rads), it is possible that endocrine therapy might be the only additional treatment. This depends in part on the size of the tumor and whether or not there are many positive lymph nodes. This is where the Oncotype test score would come into play. The test is done on a sample of the cancerous tissue removed during the surgery. A low to intermediate score would indicate that there would be little benefit to chemo and hormone therapy alone would be the recommended treatment plan.

2. If reconstruction with silicone implant was done immediately after mastectomy and then radiation was needed , do they dry out or can hide cancer cells ?

I have never heard a concern about an implant or expander (a 2-step implant reconstruction process) hiding cancer cells. It is true however that having rads after an implant or expander has been placed does increase the risk of complications. That said, this is being done more often these days. The following article explains in detail the risks associated with radiation and each type of reconstruction, with the conclusion being that "With growing evidence supporting the benefits of PMRT (post-mastectomy radiation therapy), the optimal integration of postmastectomy reconstruction with PMRT is of utmost importance. The risks and benefits of immediate versus delayed as well as autologous versus implant-based reconstruction must be considered for each individual patient. There is no level 1 evidence indicating an optimal strategy, and this complex decision process involves consideration of quality of life, surgical outcomes, history of radiation therapy, cosmetic outcomes, and life expectancy." Breast Reconstruction and Radiation Therapy

3. One doctor worried my mother saying that taking a biopsy led to spreading of cancer cells and that surgery should be followed immediately , he is wrong , right?

It does rarely happen that some cancer cells might be left in the needle track from the biopsy. That doesn't mean that these rogue cells will start spreading - they are just as likely to just sit there. Most cancers are slow growing, so this very small risk doesn't mean that the patient needs to rush into surgery. A 4-6 week wait between diagnosis and surgery is normal, and often the wait is longer. If the delay is longer because chemo is given prior to surgery, it's the role of the chemo to attack and kill off cancer cells in the breast (and any that might have moved into the body). It's not uncommon that after neoadjuvant chemo, no cancer remains in the breast.

4. Emotionally , how to take care of my mother during this time ?

There is no easy or single answer to this one. We're all different, so the right support for one person might be smothering for someone else. It's often hard for patients to ask for help or to say exactly what we need. My advice is to ask your mother what she needs and how you can help, listen to her, and particularly, read the subtle signs and follow her lead in terms of what seems to make her comfortable and what she seems to want to do. What not to do is push and force on her support that she doesn't want.

5. I'm afraid of lymphedema development , how can we prevent it , she is a housewife and uses both her hands quite often in lots of things , I don't want to see her unable to do what she is used to do .

Here's a place to start: Reducing Risk of Lymphedema

6. Is it possible that the enlarged lymph nodes that appeared on ultrasound be reactive or any thing else rather than metastatic ?

.

Yes, it is possible. The role of the lymph nodes is to catch infection and keep the infection from moving further into the body. Nodes that are swollen are simply doing their job. Even a small infection or cold can make lymph nodes swell.

Hope this helps!

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 4, 2019 02:55PM Ann_James wrote:

Another question popped in my head

If microcalcifications were found does hormonal treatment or chemo heal it ? Someone told me that their only treatment is excision by stereotactic biopsy or VAB , is that right ?

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Aug 6, 2019 10:37AM Beesie wrote:

Microcalcifications aren't cancer. They are very common and most often are caused by something totally benign.

Sometimes however they are the result of an underlying process that occurs in the cells because of the presence of cancer. So microcalcs, if they are found to be in a suspicious formation (clustered or linear), simply alert the Radiologist to look further to discover the cause, and to see if any cancer cells are present.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 6, 2019 01:24PM Ann_James wrote:

In the mammography report it was written that they were suspicious and wire biopsy or something like that was needed , the doctor said he didn't know where to enter as he could come with tissue that had no microcalcifications to be examined , does the treatment either hormonal or chemo affect them in a way or another if they were cancer ?

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Aug 6, 2019 01:58PM Beesie wrote:

Chemo and hormonal treatment are used to attack and kill of cancer cells that might be in the breast. You don't need to worry about the calcifications themselves.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 6, 2019 03:03PM Ann_James wrote:

I know that may sound like a stupid question , in case chemo and radiation killed all cancer cells and no evidence of it was found prior to surgery then what's the use of surgery in that case ? Is it just prophylactic ?

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Aug 6, 2019 03:12PM Beesie wrote:

There is no way to know for sure if all the cancer cells have been killed off until the breast tissue is removed and analyzed under a microscope. A few cells of cancer here or there would never be seen by screening.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 6, 2019 03:13PM Ann_James wrote:

Thank you Beesie .Heart

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