Diagnosed one week ago... Starting to sink in

Matryoshka

Hi everyone, I am 34 this year, recently diagnosed with IDC in my left breast, Stage 2, about 1.3 cm, ER+/PR+. I am still waiting for my HER2 results as the first round was inconclusive. My Doctor has also referred me for a genetics test, as I am, in her words, too young to have BC and have no prior history of BC in my family.

The genetics test will take about two more weeks, since I live in Asia, and my Doctor wants to wait till the results are back before she confirms a recommendation for either a lumpectomy or a mastectomy. Friends have been telling me that it's too long to wait, and the cancer may grow or shift in the meantime. But I find my doctor very efficient and has been pushing forward tests and diagnosis forward for me a small much as she can. Any opinions on whether the wait is really too long?

The other thing that has really been bothering me is that the doctor is quite adamant that I have to remove my nipple completely regardless of whether I go for a lumpectomy or a mastectomy. I was alright with this at first, but seems like it's starting to sink in, and I find myself really sad over this the past two days. Uncontrollable tears whenever I think of having to remove my left nipple. Any advise on this will be really appreciated.

Thank you so much. Knowing someone who truly understands will be reading this makes me feel so much better

BarredOwl

Hi Matryoshka:

I am very sorry to hear of your diagnosis, and at such a young age.

I would tent to trust the advice of a trained medical professional (familiar with the details of my diagnosis and my date of diagnosis) over layperson sentiments about what constitutes timely treatment and what testing is suitable prior to finalizing your initial treatment plan. Waiting for test results and surgery is very stressful, but the test results may be of significant value in selecting an appropriate treatment plan. In the typical timeline, with IDC, a week or two should not be problematic.

I am not sure what suggests "Stage 2" in your case. Given the small tumor size (1.3 cm IDC = "T1" in size), then if there is no evidence of lymph node involvement, under the AJCC criteria used in the USA, that would be estimated as Stage I in my layperson understanding. Please confirm it with your team.

Especially with larger (~ 2 cm or larger) or node-positive invasive disease, HER2-positive status may lead to consideration of "neoadjuvant" therapy (chemotherapy plus HER2-targeted therapy given prior to surgery), rather than a surgery-first treatment plan. As you are also awaiting HER2 test results, the genetic testing would only cause part of the additional wait time in your case.

For those with a surgery-first treatment plan (no neoadjuvant treatment) for invasive disease, the following study provides some insight into the potential impact of longer time to surgery (TTS):

Bleicher (2016): "Time to Surgery and Breast Cancer Survival in the United States:

http://jamanetwork.com/journals/jamaoncology/fullarticle/2474438

Correction: http://jamanetwork.com/journals/jamaoncology/fullarticle/2537188

(Free PDF version available)

"All patients were diagnosed with noninflammatory, nonmetastatic, invasive breast cancer and underwent surgery as initial treatment." In this study, time to surgery was measured from "diagnosis date". "The diagnosis date, used as the preoperative interval start date, was determined by using SEER clinical diagnosis date (which only consists of a month and year) and searching for the first biopsy date during that month or the subsequent month."

Note the conclusion: "Although the effect on both overall and disease-specific survival remains small, consideration should be given to establishing reasonable and attainable goals for the timing of surgical interventions to afford this population a finite, but clinically relevant, survival benefit."

Such observational studies have some limitations. The accompanying editorial (behind a paywall) commented:

Waks (2016): http://jamanetwork.com/journals/jamaoncology/article-abstract/2474434

"The articles published in this issue of JAMA Oncology increase our confidence that avoiding delays in breast cancer care is important to ensuring the best possible outcomes for our patients. Additional querying of this correlation in large, population-based data sets should be undertaken. Thoughtfulness and attention to facilitate timely care is essential, and at this point it seems that some added vigilance is warranted in the TNBC [triple-negative breast cancer] subset. However, we cannot yet be so convinced of where the truth lies as to miss out on important diagnostic opportunities or to create personal hardships for patients as they navigate the ever-growing landscape of modern breast cancer care."

Unnecessary delays should be avoided, but this does not mean that suitable testing or second opinions cannot be pursued within reasonable time-frames. Please do not hesitate to discuss the above with your surgeon if you have any concern about your timeline.

Unfortunately, sparing of the nipple is not always possible, given the location of the disease. Assuming you are comfortable with the basis for this recommendation, if of interest, you may wish to inquire about various options for reconstruction (in case of mastectomy), reconstruction of the nipple, areola tattoos, or prosthetics.

Best,

BarredOwl

Matryoshka

Hi BarredOwl, thank you so much for your reply! Been a little overwhelmed with all the things I need to do before my op, that I did not have time to sit down and read through your links. But really appreciate your advise, did help to calm my anxieties regarding the timeline. Love your SN btw!

I saw my Oncologist today, and have set a date for a lumpectomy, and radiation therapy after I recovered from the op. She will also remove some lymph nodes and the lump removed with clear margins for further tests. If negative, no chemo will be required. Otherwise, she will remove all lymph nodes during the op, and chemo will definitely be required.

Not sure if I missed out anything in the whirlwind of discussions.

Definitely no chance of keeping the nipple. I am not sure I understand why I am feeling so massively depressed over my nipple. I am practical enough to understand that removing the nipple is for the best, but I feel so sad that a part of me is going to end up who-knows-where. :

BarredOwl

Hi Matryoshka:

Re your last sentence, best not to go there, although I confess I did.

The surgical pathology results can sometimes differ somehow from the initial diagnosis, which can sometimes impact understanding of distant recurrence risk and recommendations for "systemic" treatment(s), including (a) chemotherapy; (b) HER2-targeted therapies (for HER2-positive disease); and/or (c) endocrine therapy (for hormone receptor-positive disease).

Of course, chemotherapy is not always recommended to those found to have node-negative, ER+PR+HER2- disease. On the other hand, endocrine therapy (e.g., Tamoxifen) is very likely to be recommended to you. It is important to keep in mind that this is the areas of expertise of medical oncologists (not surgeons), and that a variety of factors will be considered by your medical oncologist in connection with his recommendation(s) to you. For example, pathologic factors including tumor histology (e.g., ductal, lobular, etcetera), lymph node status, tumor size, hormone receptor status, and HER2 status, as well as grade, lymphovascular invasion (if present), and in some countries, the results of an additional prognostic test, such as the OncotypeDX test, MammaPrint test (plus BluePrint test), or Prosigna test, will be considered, as will certain clinical factors of patient presentation and medical history, such as age and any relevant co-morbidities.

Sending you my good wishes for HER2-negative status and negative genetic test results.

🍀

BarredOwl

Matryoshka

Oh yes, the Oncologist did inform me that I am HER2-. Somehow she seemed more relaxed about things now that this result is out. Not sure if I should be relieved? But I forgot to ask about the grade amidst all information about the surgery and nipple removal, and she did not bring it up too. I also realised from my personal readings that mine seems to be Stage 1 rather than 2, so now I am a little more confused than before and wondering if I missed out anything from the consultations. She has recommended Tamoxifen after the op, although we have not discussed the timeline, like will it be immediate or after radiation, etc...

After two days of random emotional outbursts, I am able to think about removing my nipple without bursting into tears, I know I will definitely still cry about it sometime from now until my op, but hopefully it gets more manageable. I am just not sure why I am so emotional about it.

One of my friends seemed to think that I am fixating on this to get my mind off the whole idea of cancer and the decisions I have to make.

And a part of me feels like I need to go for a holiday before my op, like just one more bout of fun while I am still the pre-treatment version of me, before I am changed forever. Yet, I am worried whether pushing back the op to perhaps early May is a bad idea. Kinda feel a little guilty that despite all this, the severity of it all, the worry I have caused, I am still thinking of having fun.

I am usually a decisive and practical person, but this cancer is bringing out all sorts of childish and whimsy in me. I refused to go to work yesterday simply because I couldn't face the thought of having to act like I am strong and ok to my colleagues. I am really lucky though, my bosses have been really understanding and supportive. One of them even encouraged me to go for a short holiday before my op, to get into a more relaxed frame of mine before the surgery and the path to recovery starts. I then spent the day at cafes, catching up on long overdue personal paperwork, filling up forms and preparing to-do lists. It did make me feel better and a bit more in control.

BarredOwl

Hi Matryoshka:

Thank you for the update. Given that the biopsy showed hormone-receptor positive disease, then the HER2-negative status of the biopsied tissue is the best outcome for you (based on what is the picture looks like at this time).

Because the actual "pathologic staging" relies on surgical pathology (including lymph node assessment), it may differ from "clinical staging", which is based on the results of clinical examination, imaging, and biopsy results. So when newly diagnosed patients ask about their "stage" pre-surgery, surgeons often wiffle-waffle about it. If you are wondering what is currently known so far based on the pathology findings from biopsy, I recommend that you request "copies of the complete pathology reports from all biopsies to date (including any addenda or supplements with results of ER, PR and HER2 testing)" for your review and records. This is actually best practice: To confirm what you are told verbally against a written report with your name on it. The same applies to surgical pathology reports and related testing. Trust, but verify.

I do not think you are being overly emotional in feeling or thinking a lot about the impact of such a loss. It seems like you are facing head-on the details of your diagnosis, potential treatment(s), and the decisions you may need to make. I think your friend hears your concerns and probably has only good intentions. But it is not easy for those who are unaffected and are not living in your reality to fully empathize with it, and truly understand the physical impact, or depth of the worries and fears from all of the uncertainty and unknowns.

I think a mini-vacation before your planned surgery date is a nice idea if practicable, or at least indulge yourself with relaxation and favorite activities.

BarredOwl

mustlovepoodles

Matyroska, I did exactly that--a 1 week vacation to Savannah, GA, before I started chemo. They gave my husband and I a much-needed break the intensity the whole cancer issue.

cse70

Matyroska,

Your words stirred memories of how I felt with my first diagnosis. Yes, I was anxious! But I decided I was not going let BC define who I am. Although we can't control cancer, we can control our response to it. I refuse to look at prognosis numbers, because as someone once said, "I looked all over my body and can't find an expiration date stamped anywhere!"

Be strong