IDC at 34. Devastated

Are you working with the breast surgeon as well? Have they suggested a mastectomy? I would want to know, from a surgical standpoint, what is the best way to target this area. Is he a well known and good onc? You have to find a way to get this out of your mind, until you start treatment. Hobbies, walking, sunshine, all of the above are good ways to help "get your mind around" this situation. What is for sure, is that you have to have a plan. Plan for your treatment, plan for your children returning to pre-school, find a daycare if needed for the 1 year old. Start making meals and freezing them, have your friends help you put a schedule together of things that they can do to help you. Schedule a deep cleaning of your house, because you probably won't want to do it later. Try to enjoy what is left of the summer. The good news is that the area is hormone receptive, which means Tamoxifen for you. I take that, and it is very easy for me.

I would hold off on looking for another oncologist, find out what the diagnosis is first. You may want to consider a facility like MD Anderson, or similar, because you are very young and need to get the best care available to you. You will need to find out a stage, grade, is it in the lymph nodes. I don't understand how the chemo topic is even discussed without knowing if it has gone to lymph nodes. What else do you know?

(((Kiki))). Most women don't even get screened before 40—it truly sucks that you've been diagnosed so young.

Doing a mastectomy first—though the size of the tumor might logically dictate that a lumpectomy would excise too much tissue to be practical—forecloses the ability to assess the effectiveness of a chemo regimen and tweak it if necessary. Neoadjuvant chemo not only would allow investigating “pathological response" but also possibly shrink the tumor enough to make breast-conserving surgery possible.

And I, too, was blown away by how wrong I was about oncologists. When my husband was doing his internal medicine residency, he couldn't understand how so many of his colleagues would want to choose hematology/oncology as their eventual subspecialty, because it was (so he thought) depressing and fraught with frustration and despair. He chose cardiology. (Of course, he sees a lot of chronic cardiovascular disease and congestive heart failure patients, so the CCU ain't exactly The Happiest Place On Earth, either).

So when friends told me how nice my prospective MO was, I naturally assumed they meant that she had a comfy shoulder to cry on, a warm embrace, sympathetic gaze, and an endless supply of Kleenex. She turned out to be cheerful, with a wicked sense of humor—and when I began to explain (at our first appointment, before getting my Oncotype results back) why I simply could not do chemo, she cut me off and replied, “Whoa—back up. Who said anything about chemo? Tell me about yourself: who you are, what you do, who you live with, what you love to do, what pisses you off, and what you simply could never do without."

Two years in, I would walk barefoot through broken glass for her.

yes. I'm working with a breast surgeon. He talked to me about a lumpectomy. But that's down the road as me want to shrink it first. Chemo is the first step. I'm sorry I don't have a lot of information just yet. My mother is moving in with me for a while. Thank god for her she's my angel she called me and told me this morning. That was great news

I know I need to change him. But I wouldn't even know where to start right now. I haven't even had any scans done yet. Once they come in And depending on what they show I'll be able to make More decisions. Thank u for respondin

university of Michigan cancer center is about 1 hour from where I am so it's def accesible. My husband wants to go check it out. Maybe with all the scans and bloodworm in hand that will be out next step. Thank you for respondin

I'm sorry for you diagnosis. I was 35 when I had my first round of breast cancer, and I had 3 kids, so I totally get it.

I adore my med onc, but there have been times when I *wished* he would be more up front with me. He sometimes hedged a bit too much and erred on the overly careful side in terms of laying things out for me. My husband would get frustrated when we would ask a straight forward question, and he would skirt the answer, then pay my knee with compassion. So, there are no perfect docs, although he is pretty close, imo.

That said, I think you may be better off waiting til your scans are complete, you have a definite stage, and the med onc gives you his recommendation for treatment. If you still don't feel good with him, or you question his recommendations, then by all means, get a second opinion. Start asking around for names now, maybe from your breast surgeon. You may even want to schedule an appointment with one that will take place a week after your scan. That way you have something on the books, but you can cancel it if you choose to stay with your current MO.

Hi Kiki,

So sorry to hear about your diagnosis. My wife 35 years old was diagnosed late June IDC grade 3 triple negative left breast stage 2A. We are in Michigan too currently in the Beaumont system. She is going to do neoadjuvent chemo first starting Tuesday. All of our docs have been great if you want to check them out PM me. Our life has been consumed with cancer and we wonder if normal will ever come again.

I would definitely suggest getting a second opinion - sooner rather than later. If you wait too long then it seems like you're put on this road that's hard to get off of. A second opinion is good for just peace of mind if nothing else. And pretty much any doctor who's worth anything recognizes the need to hear someone else's opinion. You'll be seeing this MO for a long time - and sometimes super frequently during chemo. There were weeks when I was in the office three times due to problems!

Also - they pretty much knew my stage with the results from mammo, US, and MRI. The doctors that I'm with only do PET or CT scans if there are symptoms that would suggest mets. Have they already checked nodes with US or MRI?

ive only had the mammo and us. And a biopsy to confirm the diagnosis. I was never told about the nodes. My MRI of both breasts is in a couple of weeks. Is that what decides stage? The med onco said that was for the surgeon only and that he goes by the pet scan results for staging. I really really don't know. I have a grade 2 , estrogen+ progesterone +, 3.5-4cm mass. IDC left breast. Thank you for posti

An MRI will confirm if there is only one tumor so it's kind of for the BS since it will help to determine which surgeries are options for you. But a PET scan is not necessary to determine stage. My MO gave me the reasons to not do more testing as: false positives requiring more follow up, increase anxiety, increased radiation, and cost.

That being said - if the scans are needed, then you should have them. Every diagnostic modality has it's strengths and weaknesses.

I particularly like a PET/CT because it shows hot spots anywhere in your body. That said, I am aware that false positives are certainly more likely than with some other modalities. My BS wanted both a CT and an MRI before surgery to pinpoint the areas under consideration. Each shows a different picture.

Note - staging can change after the path results from your surgery. But if you're HER2 positive, you'll likely have neo-adjuvant chemo.

Colorful - welcome to you too since you are brand new to BCO.

It is a good suggestion to get and keep copies of all your records & tests & scans.

Hi Kiki,

First off, I'm so sorry you are here. I was diagnosed with an aggressive breast cancer in Feb of this year. I was only 31 and I have 2 little boys (1 & 4) and it was soo scary in the beginning. I decided right away I wanted to get a few opinions so I got 3- one of which was from the University of Michigan. If you want to get a second opinion, I would suggest starting that process now. In my case there were several advantages to starting the process immediately-

1.) The initial hospital I went to for my imaging and biopsy referred me for additional tests. The wait for some of these were quite long. When I contacted another local hospital system they wanted me to have an MRI before their Dr's saw me- so they scheduled one at their facility for 2 days later. Not all facilities have the same wait times for exams, so getting into another system might speed things up.

2.) Scheduling a 2nd opinion might take a week or 2, so I would go ahead and start now so you aren't prolonging your treatment waiting for test results.

3.) If they all agree on the same treatment (as mine did) then you have that extra peace of mind.

The first MO I met with was a bit like the one you have seen, and based on my experience they aren't all like that. When we got the results of my breast MRI they found 2 other spots in my breasts that needed to be biopsied. She told me she was pretty sure they were cancer, which caused me additional anxiety, and ultimately they turned out to be B9. She also told me because I'm triple negative there are probably cells floating around in my body- again, there is no evidence of that either and I really just felt she was adding anxiety to an already stressful situation. At that point I felt like I was already worried enough about what we did know, there was no need to speculate.

The other MOs I saw were very different. The Dr's at University of Michigan were very optimistic- they made me feel like this isn't a death sentence and they treat aggressive cancers aggressively and more likely than not I will be fine. They made me feel so much better- I think they see more cases and have more experience which made me feel like their opinion really held a lot of weight. The third MO I saw was kind of in the middle of these 2 extremes, and I chose her because I do feel like she tells me how it is, but yet doesn't bring up issues that aren't there. Since all 3 opinions for treatment were the same, I chose based on who I liked best, and what would be most convenient (UofM is about 2.5 hours from me). It's true- this is a long term relationship and you should really trust your MO.

Getting second opinions are much easier to get then you think. A lot of facilities have what they call breast clinics, where in 1 day you will see an MO, a surgeon and a RO (for one I also saw a nutritionist, social worker and genetic counselor). They then meet together to discuss your case (they call this a tumor board) come up with a plan and you leave there knowing what they would suggest that you do. All I had to do to get one was get in touch with the cancer facilities and all they need from you is your insurance information, and they will request that you sign a release so they can request all the test results you have so far. They also will have their pathologists read your slides, so you get confirmation that your diagnosis is right as well.

If you have any questions feel free to PM me. I'm not sure if you are in MI- I live in the GR area and am being treated at Spectrum, but would be happy to provide you with any contacts I have made a long the way.

I am so sorry you are going through this. Being diagnosed and the first few weeks that follow are the hardest. It's the unknown. But once you get a treatment plan, you will feel better. The best advice I can give you is just take it one day at a time. Try not to overthink. If you aren't comfortable with a doctor, change doctors. I got several second opinions since there was some question whether or not I needed radiation. Ask around. There is always someone who knows someone who can recommend a MO. My breast center where I had my mammography and biopsy were a huge help. I know it's hard but take a breath. You will be ok. It just the unknown that is scary.

"I aprecciate someone that upfront but he totally broke my soul today."

Was it that he was so upfront or the news he delivered that broke your soul? A BC diagnosis is tough, hearing all the other aspects of a particular BC presented makes it tougher and more real. And we all go through that as we get more and more info on the type of BC we have. It sounds like your MO was trying to prepare you for what is a real possibility they may find with additional scans and tests based on the information he currently has available about your BC. Would you rather have your MO say, "a little chemo, a little surgery, a little radiation - its no big deal we do it here everyday and you'll be fine!" or "this is aggressive so we need to throw everything at it we can; chemo, radiation, surgery-I'll be honest the side effects can be rough...(goes into what you can expect with each)"

My first MO (30 years ago) laid everything out in a very upfront manner (surgery, chemo, rads, side effects, complications, recovery times, etc) and then said, "...the bottom line is you have cancer and we're going to do something about it." I didn't like what he had to say on the first part of that conversation but the last part has stayed with me and I've looked for that upfront type of dr ever since.

Before looking for a new MO, I'd evaluate if it was him and his upfront style or if it was the enormity of the information he imparted. Especially if you appreciate an upfront conversation when it comes to this.