Mom recently diagnosed, feeling lost

emg86

Hi, I'm so glad to have found this forum and hope to get some help from you all. Sorry for the long post, but I'm trying to get all the info that I have down.

My mom 50 years old, Spanish speaking only, found a lump in her right breast at the end of May. She's been diagnosed as stage 2, grade 3 invasive ductal carcinoma, lump measured 2.5cm. She finally went in to a mammogram in June. She had further testing and biopsy in August. Her primary care doctor receives the lab results that she has a malignant tumor and needs to see a surgeon. This doctor tells my mother that she does NOT have cancer but she needs to see a surgeon. At this point I'm confused as to why she has to see a surgeon. The doc tells mom that it's because she will need cells removed. He refers her to a general surgeon who sees cancer patients. Mom goes in for her appointment early September. The surgeon tells mom that she has a tumor that is cancer (we are all shocked and confused at this point). His nurse sends me a copy of her path report where in big black letters it states that my mother has cancer, not sure why her doc originally told her she did not have cancer. The surgeon wants to go in and remove the tumor in her right breast ASAP. She had surgery Sept 27th and is told everything went well and he tells her that he "got everything and it was a success." I ask about margins and she tells me she was told that everything is clear. She sees the surgeon for a follow up and she asks him if she's supposed to see an oncologist. The surgeon told her she probably did not (!!!) and that she was probably just going to possibly need some radiation. He refers her to an oncologist because she asked and tells her she doesn't need to follow up with him again. Mom goes in to see her new oncologist towards the end of October. He tells her that the margins were not clear, she was completely unaware of this and he requests a ton of lab work, mama print and pet scan. He also sends her to a radiation doctor. Once I realized that there was confusion and things lost in translation, I decided to go with mom to her second appt with her oncologist on Thurs. He had received mama print results, it's a high risk aggressive cancer and she needs chemo and radiation. I was in such shock that I didn't even write anything down and my mom was even more lost than I was by the end of everything. I have a copy of her original pathology report and mama print...I want to take the time to research things but don't even know how to read this report or what to look for. She has her pet scan on Tuesday and her oncologist feels confident that it will be clear because testing on the lymph nodes came back negative. He has suggested the standard form of chemo for bc patients based on her mama print results. She is scheduled to have her port put it in on Friday and he wants to get started on chemo as soon as the instance approves it. We met the radiation doc on Friday. She placed a call to the surgeon and oncologist about the positive margins. She wants the surgeon to go back in and remove what's left. The oncologist thinks that the surgeon probably went as deep as he could go, but they were supposed to discuss and call back this week. Would it be worth to get a second opinion from another surgeon? This is where we keep going back and forth. I plan to discuss it with her docs some more. My mom is depressed, overwhelmed and in shock (so am I). I want to research things and prepare her and do all I can for her, any advice from anyone would be greatly appreciated.

Thank you.

WinningSoFar

Wow, what a complete screwup. Yes, I'd definitely go to a different surgeon. And I'd change the primary care doctor too. I would never go back to a doctor who is either lying to me or too incompetent to read the report. Truth is important and we don't have time to waste chasing our tails.

It sounds like your mom is now on the right track for treatment and that's what's really important. I don't blame you for being mad, but treatment is more important than anger. I'd focus on the future, not the past, were I you. I wish your mom good health and good treatment.

BayouBabe

emg86 - where are you located? Can you ask the hospital to provide a translator? My relatives are non-English speaking, and rather than have family translate, it is much easier to have the hospital provide one that is fluent in both languages AND in medical terminology. Is this an option?

Moderators

We are sorry your mother is having such confusing diagnosiS.

We wanted to let you know there is a Spanish part of this Forum that your mother may gain insight from Foros de discusión en español.

For a Spanish version of the main site, so please take a look at our Spanish site clicking on "En Español", at the top right side of the main English Breastcancer.org site.

Also, many of our technical articles on www.breastcancer.org have Spanish versions and there are technical articles to be founds by searching there such as http://www.breastcancer.org/search?utf8=%E2%9C%93&...

We are very proud of the efforts to make a Spanish part of BCO and we hope it helps you and your mother.

Our thoughts are with you.

The Mods

Morwenna

Trying to make sense of your mom's story:

Possibly the tumour was originally thought to be ductal carcinoma in situ (DCIS). This happened to me, and my GP reading the report told me dcis was "stage 0", non-invasive, and said that some doctors describe it as "pre-cancerous" rather than a truly malignant tumour. Not really cancer at all. Maybe that's what was meant?

In my case I did in fact turn out to have invasive cancer that the biopsy didn't show .... it simply was not in the sample taken.

The next shocker for me was that my cancer was negative for Estrogen, Progesterone and HER_2 receptors, i.e. "triple negative", and grade 3 (aggressive). Also at my lumpectomy, I was found to have one node affected. The final blow was dirty margins at 8cm lumpectomy!, so I went on to have a mastectomy, 6 months of chemo then radiation treatment!

My understanding is that a low grade dcis, or even a small low grade (slow growing) invasive tumour might be effectively treated by lumpectomy followed by radiation, and possibly hormone therapy if estrogen/progesterone positive., .... but "triple negative" and/or high grade (aggressive) cancer is likely an indication for chemotherapy. If the cancer is HER_2 Positive, the treatment is Herceptin, but this is given in conjunction with chemotherapy as well.

So I'm thinking that her picture possibly changed, as mine did, as the diagnosis gradually became clearer with the path results.

May not make it much easier, but perhaps easier to understand? I know, it's like watching a train-wreck in slow motion; a painful and scary process, but eventually the pieces stop moving, and once you get started on a regular plan of treatment things will settle down, and she will get through this, especially with your support.

I wish I would have had a daughter, or anyone really, who was really interested in supporting me the way you are for her! xxx

jc254

I thought the same thing- that your mom was originally diagnosed with DCIS ( non-invasive and considered by some to be "pre-cancerous") based on the biopsy and the post-surgery pathology also disclosed an invasive component.  Same thing happened to me and it's not that unusual.  However, I would strongly suggest your mom get a second opinion with a breast surgeon before beginning chemo and/or radiation.  A second opinion oncology consultation is not unusual either. 

emg86

I'm in Houston, TX, her doctors have all actually used translators. I think the medical terms and the overwhelming amount of information is just too much for her and she just isn't getting it all :-(

emg86

BayouBabe-We are in Houston, TX. All of her doctors have used translators but I think the medical terms and amount of information is just overwhelming for her.

Morwenna & jc254- Thanks for sharing this information with me. I've done some research and things are finally starting to add up and make some sense.

Moderators- Thank you so much, I will check out the boards and let my mom know as well.

Morwenna

The amount of information and medical terms are overwhelming to many, many people, quite apart from it being in a second language!!

You will get it sorted out.