Just diagnosed and terrified

Ladyc2020

I am so afraid. Afraid it is everywhere. Need to compile questions for dr tomorrow.

DATNY

It is normal to be afraid, all of us were. Don't forget there are millions of us doing well, getting back to normal. You will be fine.

If there is something I would recommend at this stage is to repeat the pathology. I went for second opinion at a large cancer center, they did pathology on new slides, and the original one was wrong. I went for the third pathology which confirmed the second opinion. In my case, the wrong biopsy result would have put me for 10 years on unnecessary treatment. And I have heard stories of women going through the whole cancer thing, to find out after years, when the pathology was redone for whatever reasons, that it wasn't't cancer.

AliceBastable

DATNY

"I have heard stories" is the worst possible anecdotal non-evidence. Unless you can provide citations, it is irresponsible to make statements like that.

DATNY

Here:

https://www.google.com/amp/s/www.newsweek.com/avoiding-breast-cancer-mistakes-222952%3famp=1

or here:

https://www.google.com/amp/s/www.cbsnews.com/amp/news/breast-biopsies-often-get-it-wrong/

Peregrinelady

It sounds like both these articles are talking about DCIS.

mtspacekace

@ladyc2020

It is perfectly normal to be afraid, there are so many what ifs and questions and things floating through your mind. Once you meet with your dr and find out details, it all gets easier. Breast cancer is not a death sentence, modern medicine is amazing...you will get through this, one step at a time! Praying your meeting with your dr goes well!

Ladyc2020

thank you. I hope i feelLess terrifeid once I know all the details .

Rah2464

Lady sending you warm hugs. These first few steps are truly the hardest. Once you have all the information and a treatment plan, things do settle down a bit and you feel better knowing that you are going to work fighting the disease.

Beesie

Ladyc,

So sorry that you've joined us. Yes, it will get better once you get the details. Be sure to ask for a copy of the pathology report from the biopsy. That way, if there is something you don't understand or miss during the discussion with the doctor, you will have the report and can ask questions - either back to the doctor or here to us.

To DATNY's point about misdiagnosis of pathology, at this point there is a biopsy pathology. After surgery there will be a second pathology from the surgery. So that should be sufficient to confirm that the diagnosis is correct. Note however that sometimes the surgery pathology finds more and different things that the biopsy pathology, simply because the pathologist is analyzing the entire area of cancer rather than just a small sample. In my case the only difference was that my surgical pathology included a long list of high risk and fibrocystic conditions that had not been found in the biopsy sample - my pathology report had so much stuff listed that it read like a pathology textbook. And while my biopsy only found grade 3 DCIS, my final pathology found mostly grade 3 DCIS but some grade 2 too. My biopsy pathology had found a microinvasion of IDC but there was no additional IDC in my surgical pathology. Our final diagnoses are based on a combination of what's been found in both the biopsy sample and the surgical pathology, so although I only had IDC in my biopsy, that was still part of my final diagnosis and staging.

If the final pathology is significantly different from the biopsy to the point where it would change treatment plans, at that point a second analysis of the pathology might be important. But otherwise it shouldn't be necessary.

DATNY

In my case I had chemo before surgery and pcr, so nothing was found at surgery despite the 3 or 4 tumors plus the positive node I started with. I think going for a second opinion on the pathology report at the beginning is highly beneficial.

In my case, I sent for a second opinion immediately after I received the biopsy results. Not knowing much, I used John Hopkins services. They were cheap, $200 to look at the original slides (same used as in the original diagnosis) and confirmed the diagnosis.

However, then I went for a second opinion on treatment at Dana Farber in Boston. My original pathology report was 40% progesterone, which put me in the category to receive tamoxifen as per my local doctor recommendation. However the doctor at Dana Farber wanted the hospital to do its own pathological analysis. So they asked my hospital to prepare new slides for each tumor and to send them to Dana Farber. The results came back as less than 1% of any hormone.

Finally, at this point I contacted an independent pathologist and asked for the fourth pathological report. This was done on new slides, prepared again by my local hospital, from the same tissue collected at biopsy. The fourth diagnosis confirmed the one found at Dana Farber.

It is not easy to be a pathologist and look at slides under microscope all day long. We all make mistakes, I would not expect these people to be perfect in their job.

Ladyc2020

thank you. I spoke to my dr and he told me it is invasive ductile carcinoma. He didn’t have any other information for me and said they will know more after the surgery.

Beesie

Ladyc, get a copy of the pathology report from the biopsy. There will be more information in there. ER status. PR status. Grade. HER2 status. And from the imaging, there should be an estimate of the size. This is important information to have before surgery.

Was it the surgeon that you saw today? Depending on the diagnosis details, it may be appropriate to see a Medical Oncologist (MO) prior to surgery - sometimes this is important and sometimes patients don't see the MO until after surgery. With some diagnoses, chemo is done prior to surgery, and this is managed by the MO - this is why the diagnosis details are important.

Were the surgical options discussed? Based on the estimated size, is a lumpectomy feasible? After a lumpectomy, radiation is standard of care. Or is a mastectomy (MX) recommended? Radiation may or may not be recommended after a MX - it depends on several factors that usually aren't known until after surgery. Even if a lumpectomy + rads is recommended, you could choose a MX if you prefer.

These are all things that need to be discussed prior to surgery.

DATNY

Ladyc2020, if it is her2+ cancer chemo is recommended first. I am not sure about her2- cancer. But for her2+, surgery follows chemo and then the standard treatment is treatment with Herceptin and Perjeta for one year if there is pathological complete response at surgery (pcr; or all cancer gone). However, if there is any residual cancer the treatment changes, it is more aggressive.

I am very surprised you are rushed into surgery. Not sure if were you are is this possible, but I think that you should speak with an oncologist prior to any surgery. All treatment decisions are made after the full pathology is known. Moreover, many doctor groups will give a full body scan (bone scan +trunk MRI) to get a baseline and check for metastasis. The treatment would change if any other site is affected.

These are the key moment in this process, and is important to make sure you get the best care possible and the most effective treatment plan. Doctors make mistakes too, so second opinions are always welcome in this stage. In fact my local doctor encouraged me to get a second opinion for the peace of mind. I was relatively young at the diagnosis, 44.

Because I went through all these steps, I started chemo six weeks after the cancer diagnosis. I had surgery six weeks after the end of chemo. And I had radiation + the one year of herceptin and chemo.

Ladyc2020

1. it was the OB dr who ordered the inital mammogram . He said there wasn’t other information to give me u til after surgery. I meet with the surgeon on Thursday. I’m scared the dr didn’t tell me because it’s super bad. He said to expect surgery for a few days after the appointment on Thursday

Ladyc2020

it was the ordering dr who spoke to me today, he said he didn’t have other info for me. I’m freaking out that it means really bad. Scared out of my mind. I meet the surgeon on Thursday and have no idea what to expect at this point.

Beesie

If it was super bad it's likely that chemo would be planned before surgery.

The information I mentioned is standard information in a biopsy pathology report. Get the report. It's your right to have it. Trust me, there has to be more information in the report. I've been hanging around here for a long time. I have never heard of a biopsy report that says "invasive ductal carcinoma" and nothing more.

And remember that this is about you. You get to make the decisions. Your doctors inform, advise and recommend. You decide. Don't be rushed into surgery without knowing more and making your own decisions about what you want to do. This is too important to be rushed and to make decisions without having all the information.

Beesie

Ladyc and DATNY,

The NCCN Treatment Guidelines recommend chemo prior to surgery for HER2+ or TNBC (triple negative breast cancer, ER-/PR-/HER2-) cancers that are larger than 2cm in size and/or node positive.

Ladyc2020

thank you. I feel like my dr ( he is my ob) was holding back. He said remember this was just a small amount of tissue that was taken and and you will know more after surgery. He talked about the dr injecting dye into the lymph nodes during surgery. I asked about hormone and size and he didn’t give it to me, I mentioned what the midwife told me after my mammogram report some number she gave me and I thought she said mm but the dr told me he thinks I was mistaken and it’s cm. That terrifies me.

MinusTwo

Please listen to what Beesie is saying. Get copies of ALL your reports - mammograms, biopsies, etc. Ask questions. It's your body and the doctor is your "employee".

Ladyc2020

ok yes. It’s the weekend now so will have to wait until Monday. I’m afraid to know honestly.

Georgia1

Ladyc20, I don't want you to feel ganged up on, but I need to add my opinion that you should get all of the reports for the tests that have been done, and also request them going forward. The mm versus cm thing is super scary but if you convert the number into inches it is much easier to understand. I also suggest ordering "Navigating Breast Cancer, " a short book by a nurse named Lillie Shockney. It is excellent, clear, and can put all of the new information you get into perspective.

Wishing you the best and keep us posted.

AliceBastable

Ladyc20, do you have an online patient portal? Your biopsy results (and any other tests you've had done) should be available there. If your doctor is keeping information from you, get a new doctor!

Ladyc2020

thank you. There is an online portal and thank you so much for bringing that up. I tried to login but need some sort of code to do so. I will definitely do this on Monday.

You are all very helpful. Also looking into that book mentioned.

DATNY

You should look up the surgeon and see what kind of reviews he has. Must be specialized in breast surgery, of course. Also, I would highly recommend to talk to an oncologist before any surgery. They know the best the treatment protocols in case your surgeon is not very familiar with the process.

The report with the type of cancer it came several days later in my case, but I had all information by the time I talked to the surgeon. He was the one who sent me to the oncologist, telling me that, based on cancer pathology he could not operate, and I needed chemo first.

When I first heard the diagnosis, I looked up all breast surgeons in my area and I chose him after a careful evaluation. He is trained as both breast and plastic surgeon, and he was the only one to do nipple sparing mastectomy, which I initially considered, but later adandoned the idea.

He did a great job -I had a double mastectomy and wanted a nice closing, because I did not want reconstruction. I was worried because my surgery was the last one that day, after several others. But he did a great job with excellent aesthetic results in my opinion.

Loveyou64

I am so scared. I don’t what I’m going to do. I am just diagnosed with stage 4 Invasive lobular Carcinoma but my Dr is still waiting for my HER 2 result

moth

loveyou64, sorry you find yourself in this position. It's scary but it gets better. Where are your metastases? You can get more info and support on specific threads in the stage 4 forum. https://community.breastcancer.org/forum/8

Ladyc2020

thank you. I now have an oncologist appointment and also found out all other tests are still pending results, just the actual type was confirmed. I am feeling stronger and turning to faith and prayer and those who love me to lift me up.

Ladyc2020

loveyou64 I am so sorry. Sending you love and hugs and hope your fear will diminish as you know more and have a treatment plan. Sending you prayers.

msphil

hello sweetie i remember as do others here feeling those same feelings i was planning our 2nd marriages at 42yrs old pretty young at that time thought that was it for me so scared also. But my faith family and most of all my fiance at time got me thru. I haf my cry then decided to fight with Hope Positive thoughts that i would get thru this to marry the man i prayed for. Praise God i am this yr a 26yr Survivor now married to that man.Hold on sweetie. msphil idc stage2 0/3 nodes 3mo chemo before and after chemo then got married then 7wks rads and 5yrs on tamoxifen. Also we celebrated 26 wedding anniversary.

Ladyc2020

So glad to hear you are so well!! I am definitely praying and so grateful for everyone who is praying with me and for me. My mother has been cancer free 7 years now and I suppose I didn’t expect this to happen to me, at least not still with children at home - I have 3 and my youngest is 3. She was 60 when diagnosed.

Ladyc2020

my oncologist appointment has been ch ages from next week to tomorrow. I am nervous to hear what he says. I will get some answers though. I still have no info bout how grading. Or hormones. Is it true I wont know the stageuntil after surgery?