Question from a Newbie

sue64

Hi everyone. Thank you all so much for sharing your stories. I've just signed up today, but have been lurking and reading for a couple of days.

My sister had a bilateral mastectomy, followed by chemo and radiation a few years ago. Since then I have had yearly mammograms. On my last mammogram they found a lump. I had a biopsy last Monday. My appointment with the surgeon is this Friday. I have only spoken to my family dr. so I'm not sure what stage the cancer is etc. My dr. told me it was invasive ductal carcinoma, but the lump was less than 1 cm. The radiologist believes that most of the lump was removed during the biopsy. I'm just wondering if anyone who has had something similar can tell me what treatment was recommended. It doesn't sound like it's very far advanced, but I'm worried because of my sister, might they treat it more aggressively? Waiting is very hard. Thanks for listening.

Ingerp

Sue--I'm not sure anyone can tell you until you get the results of the biopsy. Your recommended treatment will be completely dependent on the attributes of the tumor--ER/PR/HER status. The waiting is the worst but there are lots of hand-holding threads here. Try to get your hands on a hardcopy of the pathology report. There are lots of women on bc.org who've had every type of diagnosis. ((Hugs))

Moderators

Hi Sue and welcome to Breastcancer.org,

We're so sorry for the reasons that bring you here, but we're really glad you found us. As you can already see, our Community is full of very helpful, supportive members, always willing to listen and offer some advice.

You may find it helpful to check out the main Breastcancer.org site's page on Questions to Ask Your Doctor About Your Diagnosis, for your meeting this week. Once your biopsy results are in, you'll know a lot more about the diagnosis and plans for treatment.

We hope this helps and we are sending you lots of positive vibes. We're all here for you!

--The Mods

Luckynumber47

Of course all we can do is guess. Your dr will definitely have all the info for you. You're right, it does sound like they caught it early. I suspect they'll recommend a lumpectomy and a sentinel node biopsy, followed by radiation (ask about doing the shorter course). You can choose mastectomy if you prefer. Generally you can skip radiation with a mastectomy. If you choose mastectomy then there's the decision about whether to do reconstruction or not

Many times you can skip chemo with early stage, non aggressive tumors. It just depends on what kind of tumor you have. Ask your dr about the ER/PR/Her2 status and ask about doing the Oncotype or Mammaprint test. Sometimes chemo is done before surgery - usually only if the tumor is large or if it Her2 positive.

Did your sister have genetic testing done? Have you had it done yet? If you are BRCA1 or BRCA2 positive (or some of the other mutations they test for) then it would make sense to do a double mastectomy. Talk to your dr about it. Testing will delay your surgery for a few weeks but it's worth it to have all the info.

Be sure to take someone with you to your appointment. There will be a lot of info to take in. Your dr will probably cover everything but it's a good idea to write down your questions so you don't forget.

Just remember, you will be fine. This is a big hurdle you're facing but we've all be through it and come out fine. It's never as bad as you imagine it will be.

Sending hugs! Lucky

KBeee

I agree with the recommendation for genetic testing. I would request the expanded testing where they test for things like BARD. CHEK2, and many others in addition to BRCA1 and 2. The results of this may alter your surgery recommendations. You do want to find out ER, PR, and HER2 status, as Luckynummber mentioned. This will impact treatment recommendations considerably. These genetic testing results will impact how aggressively they treat the cancer, more than just the fact that your sister had it. That being said, I initially tested negative for BRCA1 and 2, and that's all they tested for. Based on the history of multiple people in my family having cancer, they did recommend more aggressive treatment. One doc said, "you have a genetic component; it just may not be one we can test for yet." So... it may depend on how many other people in your family have been impacted. Do call them and request genetic testing sooner rather than later. If they drag their feet, a company called COLOR Genomics tests for about 20 mutations and you can order it online. It is a slick process, and quick. I did it, even after having later testing nad knowing what I had...I wanted to see if they had the same results. They did. I therefore ordered it for my husband since his family has a cancer history too. I wanted to know the info, and that it was reliable, so that when my kids are adults, they can choose whether or not to get tested.

Sorry you are facing this, but arm yourself with information, a care team that you gel well with and put one foot in front of the other as you move FORWARD.

sue64

Thanks for responding. Honestly, I never thought to ask for a copy of my pathology report, so I called and they sent it right over. There's so much information and it's confusing and overwhelming as I'm sure you all know. No info on Her2/ER/PR. Apparently that will follow later. The radiologist did an addendum to the report indicating that the lump he biopsied was not the one seen on the mammogram originally (they had put in a clip and I had another mammogram following the biopsy). So the recommendation is that I have a further stereotactic biopsy of the original lesion. The lesion that he did biopsy was less than 1 cm and Grade 1. In any event, I see the surgeon Friday so will get some definite answers then I hope.

I will definitely ask about the gene testing. My sister had it and was not positive for BRCA1 or 2.

Thank you again. It's helpful to not feel so alone.

Runrcrb

if you can take a friend to all dr appointments to take notes. Your spouse or significant other may be too close to the situation to take good notes.

If you don’t like the breast surgeon or just don’t get a good vibe, find another one.

If lumpectomy is recommended, ask how disfiguring it might be. Mastectomy- talk to a plastic surgeon before you make any final decisions on surgery.

If radiation and/or chemo is recommended, talk to those doctors before making final decisions.

Grade 1 is typically slower growing so you have time to talk to doctors and read up before making your treatment decisions.

barcelonagirl

Hi Sue,

From all the great responses, it looks like you've already found an amazing support group here. It's a lot to take in, new terms to learn, and the not knowing is hard. Hopefully you'll get more clarity on Friday. Having that list of questions will help you stay focused!

There are a few helpful workbooks/binders out there to help organize your paperwork, results (and thoughts). American Cancer Society makes a "Personal Health Manager" Folder and you can request it by diagnosed area...i.e. Breast. Agendia (MammaPrint test) makes a Personal Breast Cancer Workbook that you can fill out online and print...helps you have your data all in one place. (I now work for Agendia after my diagnosis 5 years ago, having an intermediate Oncotype test RS 21 and then the MammaPrint test which showed that I was High Risk and would benefit from chemo. Would not have gotten that treatment without the MammaPrint test!)

We all wait to hear how your appointment goes!! Deep breaths!

sue64

Thanks everybody! I had first meeting with the surgeon on Friday. The lump that was found in the mammogram couldn't be correlated to the lump they biopsied during ultrasound. She is not sure if I have two small lumps a few centimetres or if they are connected in some way. I have an MRI and a stereotactic biopsy scheduled for tomorrow. Just hoping the results come back fast because Friday is a holiday. The waiting is the worst part. Thanks for all your support