Just diagnosed questions...

gooseberry

I was diagnosed Thursday the 22nd. My obgyn was very vague and I had to ask outright what does this mean? I have cancer??? and then he read me a sentence from the pathology report. Invasive ductal carcinoma and then I knew that meant cancer. He never said the word cancer to me. I asked if they knew stage or anything and he said no they will do that after surgery. So he set an appt with a general surgeon and sent me on my way. I had to concentrate on getting out the door and home without having a total breakdown so I did not inquire anymore. Then I get home and the family are asking me all kinds of questions I do not have answers too. So I get a copy of the pathology report and all reports on the tests I had done to this point. First off from my very first mammogram they knew it was cancer, well technically highly suspicious of malignancy, so why I did not go straight to biopsy (vs. taking 3 weeks to get to that step) is beyond me but I try not to focus on that. So The pathology report says: Invasive ductal carcinoma and ductal carcinoma In situ. So how is that possible? In situ means non invasive... but the first one means invasive, how can you have both? So then the day after that a team of doctors at the cancer center who did the biopsy had a conference meeting and generated a report sent to the gyno and it said diagnosis as Invasice ductal carcinoma, clinical stage l, Ti3 ( i think) MX NX. I know what those mean the size, and they don't know if its in the tissue or lymphnodes.

So I am trying to focus on the stage l, because that should be good but I had a u/s guided biopsy, they cannot stage cancer with that can they?? The ob said they couldn't. So I don't know exactly what is stage 1.

I don't have an appt to see the surgeon till June 5th. Then I was supposed to go on vacation (already paid for) but I don't know if I can go or not.

Its irrational I know but I had precancerous polyps removed from my colon 4 years ago and I have these visions of my entire body being riddled with cancer. This is the one I found but its everywhere else...

So can anyone give me some insight as to what the pathology report means. Can I go on my vacation or will the doc look at me like I am crazy if I even mention it?? Thanks for any info... I feel like I entered into an alternate universe on thursday, i still don't feel like its real... Read the statistics, thought they would say oh its nothing and the obgyn came in there jolly happy and smiling... so I was relieved a little then he told me I had ductal carcimona. I don't even think he said invasive, because I am sure I would of remembered that.... Thanks again.

BTW I am 41, found a lump in the shower on my daughters bday. Went for a mammo, another for more detail and a u/s, then a biopsy and now waiting to see the surgeon.

voraciousreader

goose...I'm sorry to hear your physicians have not spent enough time with you so you can understand what is happening.

First off, until you have surgery,your stage is tentative. Once you have surgery and have a final pathology report, then you will know your stage. That's why there are "X" s on your biopsy report. If your cancer is non invasive.. You would tentative be staged at Stage 0. That said, you can have either non invasive cancer, invasive cancer or both. If the doctor said your biopsy found invasive cells, you would no longer be staged at Stage 0.

What will ultimately drive your treatment is the specific characteristics of your tumor....Register at the NCCN's website and read about the breast cancer treatment guidelines.

Hang in there! Until you have a treatment plan in place, you will be very anxious. That is normal. That said, call your doctor's office and ask to speak with someone so you get answers to all your questions.

Good luck!

jessica749

Hi, sorry for your diagnosis and worrying over a long weekend.

Not sure what your location/insurance is but rather than a "general' surgeon I would try and find a breast surgeon at a NCI cancer care center if possible (would have breast specialities) see here http://www.cancer.gov/research/nci-role/cancer-cen...

It is possible to have dcis and idc, not unusual. I had that. Think of it as maybe all once dcis, but some of it has broken out of ducts and become invasive….

Anonymous

gooseberry--from what you have described, it sounds like they found IDC and DCIS from your biopsy. Those can occur together and often do. They gave you preliminary staging, (stage one, due to the IDC), but they can't really give you final staging until all your work-up is completed. (they will probably check the nodes during surgery; the stage may change, it may stay the same; they may also do other imaging tests). check with the doctor about the timeline, you may still be able to go on your vacation. It takes time to schedule everything anyway. Praying everything goes well.

anne

gooseberry

Thanks everyone. I have 2 appointments right now. One with a local general surgeon this thursday but I really don't feel the care in this hick town is sufficient, especially the way the gyno told me absolutely nothing... Then I have an appt at the cleveland clinic but the earliest they could schedule is the 5th of june. I stess about the extra 7 days, thats why I have not canceled the local guy. I really just want it out of there as soon as possible and get on to treatment and out of this crazy limbo and what if and I have younger children which makes the roads your mind can take you down way worse. Family said to go listen to the local guy and if you like what he says go with him but after reading a lot, I think I need to go with the CC no matter what. I will go to that CC appt. the 5th then vacation is the 6th. I don't know how fast they schedule surgeries but in my mind I was thinking they would want me in there asap like a couple days after my appt. I don't know if that is naive or not lol. If I would have no surgery that week, then I would go probably go on my vacation... Guess I need to just wait and see. Thanks again for the explanations... oh and BTW why isn't the cleveland clinic on the link posted above to find a provider?? Should that be a concern? Thx

Marksgirl

Gooseberry

I chose a very recommended breast surgeon and had to wait 4 agonizing weeks for surgery.   That is unfortunately pretty typical.    That was absolutely the toughest time of the whole process.   You will feel so much better when you are over this phase.    We are so sorry you are here and we all really really understand.   The skill of the surgeon is so important for getting it all and what your outcome is.    I am glad you got in on the 5th before you leave!   You will want time to research options, Lx, Mx, bilateral Mx.     Hugs to you.

maxdog

Sorry to hear your news, but you are in the right place. I am not too far into this journey myself, but the one thing I have learned is that nothing happens quickly! Definitely plan on going on vacation. See as many doctors as you need to until you are comfortable with one. Try to stay calm, don't worry until you.need to!

Alexandrad1

I Agree w Jessica 's advice on seeking out a Breast Specialist surgeon!!!

Spookiesmom

There will probably be MORE tests ordered, so don't freak out!! All very normal. CC has an excellent reputation Idgo there. Unless some doc says no, do the vaca.Stay away from Dr Google, it's not your friend.

jessica749

Gooseberry, you ask a valid question not obvious on surface but

Cleveland Clinic IS an NCI - designated CC center --- it is part of Case CCC. See the description in depth for Case CCC (from the NCI link) -

" The Case Comprehensive Cancer Center (Case CCC) at Case Western Reserve University was both founded and became an NCI-designated cancer center in 1987. It was recognized as an NCI-designated comprehensive cancer center 11 years later. In 2004, the institutional and membership base from the founding partnership between Case Western Reserve and Ireland Cancer Center of University Hospitals (UH) expanded to include the Cleveland Clinic. Cancer research and care at these three institutions are now unified under the leadership of the Case CCC. In addition, the freestanding cancer hospital at UH, the Jane and Lee Seidman Cancer Center, open in Spring 2011."

jessica749

I would absolutely definitely WAIT the extra couple of weeks. You can keep calling to see if there are any cancellations. Be a kind squeaky wheel who just explains nicely the anxiety and the desire to come in earlier should the occasion suddenly present, and if they don't mind you don't mind calling to check in every couple of days….

I don't know, it worked for me getting in much earlier than the initial weeks I was told it would be before my appt…I know I was lucky yes but also if I hadn't called AGAIN, the opportunity wouldn't have presented itself. That said, waiting 2-3 weeks won't matter as someone above said.

What could matter for the rest of your life is sub-par care. There is so so so much that is unknown, and what is known is limited. Carefully choosing the institution, and the people within it who will be your primary care providers (assuming you have some choices here in terms of resources/financial/insurance and locations) is one of the few things you can do to ensure the best outcome for yourself.

Is there a way to further research the providers at CC you might meet with? Is it an oncologist first, or a breast surgeon? Find out who they all are, focus in on the ones you might trust most. If you have the time and inclination that is. It's a way to channel anxiety positively an have 'control'. At least what I am telling you is what works for me/ my modus operandi! ;o)

lulu2533

Just wanted to let you know, I had to wait about 6 weeks for my surgery. It's hard to find a date when both breast surgeon and plastic surgeon are available to do surgery on the same day. I've learned on here it's pretty typical .

Also, are you sure that they didn't mean Grade 1 not stage 1? They are two different things.

gooseberry

I had a core needle guided biopsy and it says Invasive Ductal Carninoma, Clinical stage l: T1c, Nx Mx

Thats the exact wording on the suggestions of the team letter to the obgyn.

Thanks for all the comfort on waiting for surgery. I have a vision that its not in the lymphnodes but by time I get it all done it will be... Sitting on my vacation, it will make it to there and I know its irrational lol but the mind does what the mind does. Hell I still think its everywhere not just in the breast but all over... Again I know thats irrational too but thats what my mind does. I know pretty much nothing about any of this. There is no cancer on either side of my families. Diabetes, heart disease tons but no cancer so this really is a surprise and still trying to wrap my head around it. Thanks again this board has already been invaluable.

maxdog

gooseberry-I have zero cancer in my family history as well. Heart disease, alcohol dependance-yes, but not cancer. I am 39. It's just luck of the draw. I also have to wait another 5 weeks for my DMX, diagnosed 4/30 and sx 6/30. Sit back and try to relax-we will figure it out!

VioletKali

((Hugs)) Hi Gooseberry. At this time last year I was just weeks shy away from receiving my Breast CA diagnosis, and only about 6 weeks shy of my 32nd birthday!

I have no family history of cancer whatsoever, and I guess I too had the "luck of the draw".

RosieMjdtrt

Go on vacation!!! I went to Florida 3 days after my original diagnosis of DCIS. The vacation kept me from obsessive cancer thoughts. After my lumpectomy I was told I also have 8mm invasive tumor. So, no longer stage 0 but now Stage1b. Wish I had another vacation planned, because the obsessive thoughts are back and I feel I am back to square one (not knowing treatment plan and now having to go see an oncologist).

Hang in there and be prepared for the waiting... It truly seems to be the worst part

LindaKinNC

Gooseberry - I was in much the same situation. Dx'd 5/7, met with breast surgeon on 5/14 and rec'd full path report (ER/PR/HER2+) and our vacation (also paid for in advance) started 5/16. We went. Did I have a "good" time? Yes and no. I wasn't fully present and could have enjoyed myself more had the "unknown" not been weighing on me. But the break from my day to day and time with my husband without his friends/our neighbors borrowing him was nice.

I am waiting on the results of my gene panel, hopefully that will be back by the end of next week. Met with the MedOnc today, left even more confused as to how I want to proceed. Have a consult appt with PS tomorrow to cover all aspects before getting the gene test results. I suspect I'll be even more confused, if that's even possible, after that appt.

Sometimes having options isn't helpful either