Today diagnosed with IDC, bummer!

hap_k

Hi, I have posted part of this here http://community.breastcancer.org/forum/5/topic/791736?page=1#idx_4 and was told to join a bunch of great people over here. 

Here's the nitty gritty from the path report:

Invasive Ductal Carcinoma

Histologic Grade 3

No test of lymph nodes done yet (can't feel anything & nothing spotted on ultrasound)

No DCIS

No Microcalcifications identified

Estrogen Receptors--- 1+, Positive 

HER2/neu  --- 0, neg for overexpression 

Ki-67  --- HIGH, 25%

This is really not great, right? I have already done A LOT of reading on breast cancer. But how bad is  this Dx? As bad as I think? Appointment with lead doc at Breast Cancer Center will be on Monday. Expecting there will be further tests: biopsy for lymph node involvement? MRI?  What else is likely? 

I have dense breasts and was on estrogen only HRT since total (ovaries too) hysterectomy in 1992. Just pulled the HRT patch off & quit a few days ago. Was on it to protect bones. Hah!

I'm leaning toward mastectomy. Oh go for broke, I'm leaning toward bilateral mastecomy. BTW, I'm not crying. Did that when I learned what Birads 5 meant. Instead I went for a 4.5 mile "Walk Breast Cancer Into the Ground" speed walk.  

As I posted on the other thread, I am otherwise in great shape. Take no medications except armour thyroid and vitamins.

Any comments would be appreciated. Still just absorbing everything. Everyone I've met on other threads have already been really helpful & kind. What a great site.

Hap 

Cindy-Rose

hap,

I'm so sorry that you have found yourself having to be here but happy that you found it. You couldn't have asked a harder question for any of us to answer because we can't know all the particulars of your disease. I am not a Dr but I'll give you a little bit of my experience if that helps.The cut off for er and pr receptors to actually be treated as positive I believe is 10...so if your report says no to er, pr, and her2 that would make you a triple-. There are triple- posts on here where you could ask what treatments they've had. The fact that there has been nothing found in the lymph nodes is good and suggests that the bc hasn't traveled anywhere yet, but that won't be ruled out until further testing. You will have to ask an oncologist what your specific treatment options are because no two people are the same so no two bc's are the same. I know you would rather have more answers than I can give you but without further testing nobody can answer that for you. IDC is the most common type of bc so it gets a lot of attention and has a lot of different treatments. Definitely keep doing things like walks that will keep your energy up because from what I've experienced the fatigue is terrible.

All my Love,

cin

Moderators

Hi Hap_k,

It might be helpful to start on the main Breastcancer.org site and the extensive IDC section for information about treatment and follow up care for IDC. Also, the Your Diagnosis section may give you some answers as to what parts of your path report mean.

We hope this helps!

--The Mods

hap_k

Thanks, Mods, I have read all of that and much more & will read it again. But it's more the personal perspective/experience I was wondering about from people with similar dx--like IDC with grade 3, and the Ki-67 and estrogen positive. Cindy-Rose--there's been no biopsy of my lymph nodes yet, but they didn't find anything worrying on ultrasound, the Estrogen is 1+ positive. I believe that means they can use hormone therapy with me. Thanks for your words, much appreciated. Hugs.

Anyway, not to worry. I'm feeling fine emotionally & physically--I suspect the full impact will hit later when they start talking about what to do next.  I do not like or much trust the medical system. I had to research like a maniac to get my husband through aggressive prostate cancer last year with the best possible tx. His first doctor inspired no confidence. He's is now doing great. None of the dire consequences because he had the best surgeon we could find (and because my husband is lean & fit and otherwise healthy), who amazingly was local & on our insurance plan. 

I'm just hoping to do as well, though it looks like in my case I have to travel 2 hours. Thanks to all. 

Hap 

ek25

Hap_k,

I too have just been diagnosed with IDC, though I was earlier (2 months ago) diagnosed with DCIS.  You and I are in similar stages right now.  All I have to go off of is the pathology report from the biopsy, which offers no staging until surgery.  I had a small tumor (.5cm), Grade 2, ER+, PR-, HER2 undetermined.  My HER2 results have been sent for FISH testing to determine whether I'm + or -.  I'm scheduled for a lumpectomy and sentinel node biopsy on Tuesday.  What I'm slowly realizing as more and more of the pieces of the BC puzzle fall into place, no two women seem to have the same diagnosis.  You might get little bits and pieces that are similar, but some other feature will change the diagnosis or treatment.  Next steps for me will be the surgery and node dissection.  After that, I'll have my stage and will meet with the oncologist and hopefully get an oncotype score.  Don't know yet if chemo is going to be part of my treatment - that will depend on the nodes. 

hap_k

Hi ek25,

Thanks, I am beginning to see what you mean. There are so many variables that it makes comparison difficult. For example, even though you are ER+, your cancer is so small that they didn't give you Tamoxifan or other hormone therapy to shrink the tumor, right?  Whereas perhaps they would give me at 1.9 cm tamoxifan to shrink the tumor before surgery? But maybe 2 cm may be the cut off for shrinking tumors. I have to look that up. Probably I will be scheduled pretty soon for sentinel node biopsy. I hadn't thought of doing that at the same time as the lumpectomy but of course that makes sense. Then depending on what they find I might have the mastectomy. They didn't find this lump so I'm tempted not to trust them not to find the next one.

I  am thinking of asking for an MRI. Did you have one? When they did the ultrasound I had to argue with them to get them scan my other breast (Sonographer said that I hadn't said there was lump there! "What, I have know there's a lump for you to look for one?") they found two small cysts but didn't scan under the arm on that side. So want an MRI, but not if it slows things down. With Grade 3, it want this lump out ASAP.

Best of luck to you for your lumpectomy & biopsy on Tuesday. Hopeing they find nodes negative! Then you're on your way to recovery!  Step by step for all of us.. Hugs,

Hap

ek25

Hi Hap_k,

I actually started out with a diagnosis of DCIS only.  I went to see the breast surgeon and given that I was so strongly ER+, she asked if I wanted to be part of a clinical trial giving women Tamoxifen for 6 months.  I guess Tam is good at clearing up the "noise" with DCIS.  The problem with DCIS is it tends to be profuse throughout the breast, which makes it almost impossible to get clean margins.  She told me that if she operated on me in April after the diagnosis, she had about a 3% chance of getting clean margins.  Her hope was that after 6 months on Tam, the noise would be gone and she could get clean margins.  I signed up for the trial and had an MRI at the start and one at 1-month of taking it.  There was a tiny spot on the MRI right next to the original biopsy site that lit up on the first MRI and which she thought might be a hematoma from the biopsy.  On the second MRI, it was still there, but looked to be unchanged.  She did not think it had the usual characteristics of invasive cancer.  So, a couple months later, they called me in to check on it and see if the spot was still stable.  They sent me to ultrasound and two radiologists tried to find it but couldn't.  They found a couple of cysts, but that was all.  So then they scheduled me for an MRI-guided biopsy and that came back last week as invasive.  I would absolutely ask for an MRI because that's the only way they found this in me.  Since April, I've had what seems like 25 mammograms, both regular and enhanced view and NOTHING showed up.  I'm a bit bummed that it's been left there for a couple of extra months, but it's not like I wasn't doing anything to deal with it, I was at least taking the Tam.

With the sentinel node, they actually do that procedure first so that they can send it to pathology while they're doing the lumpectomy.  If the results come back positive, they can do axillary dissection or more nodes while you're under to determine the extent of the nodal invasion.  Like you, if my nodes are involved, I'll be looking at mastectomy and chemo.

Wishing you all the best. 

hap_k

That REALLy helps clarify my thinking. Thank you so much. I will ask for the MRI first, then go from there. Though the more of these stories I read, the more I feel like saying "take these back and give me a new pair." No doubt that feeling fades.

I am so sorry you had to go through all that. At least you have the right Dx now & will be getting the right treatment . I'll be thinking of you on Tuesday.

Hap 

SillyMama

Hi Hap_k,

I have to echo that everyone is special, and the treatment has to match. Just wanted to add that although a mammogram missed my lump 9 months before I found it myself, AND because I kept falling through the cracks so it took me 15 more weeks to get my IDC diagnosis... Here I am, 8 years later, doing FINE.

So although someone probably did "miss" my lump, I really did/do feel like my treatment team is on the ball. Having said that, I will also encourage you to be your own advocate. Having been through the experience, now I would NEVER allow the system to misplace me. But again, I'm fine, and "so far so good" is great.

ek25

I hear what you're saying about wanting a new pair.  I liked someone's tag line on this site, which is, "My breasts are trying to kill me so they have to go".  When I thought I just had the DCIS, the thought of mastectomy would make me cry.  I didn't want to be reminded every day that I had been disfigured.  Move on, you know?  But now that I have invasive, I have no attachment to them whatsoever.  If it means life or death, take them off.  And, after three kids and all that breastfeeding, I think I might be ready for a new set.  The physical, emotional and mental toll that this experience has taken on me - you know, I don't know if I could go through it again.  I know mastectomy is no picnic and isn't a gurantee of it not recurring, but it's pretty damn close.  I might consider a bilateral and just be done with it.

Sillymama - Thank you so much for weighing in here.  You are what I love about this site.  All these wise and wonderful veterans who calmly sit back in the corner watching us newbies FREAK OUT about every little thing and then at just the right time, you casually stroll in and tell us that you're 8 years out and your treatment was initially bungled, but you're fine.  We, of course, think we're terminal and are going to die tomorrow.  Thank you, thank you, thank you.  And, best wishes for many many years to come. 

peggy_j

Welcome to the site. I'm so sorry to hear you're going through this, but as you said, this website is a great source of info and support.

Yes, you should definitely get a B-MRI prior to making a decision on surgery.  It sounds like you've had a biopsy but not surgery, right? Sometimes the details change in the final path report, in terms of the size, grade or other characteristics of the tumor. (Believe it or not, my tumor came in a lower grade and slightly smaller than in the biopsy, but that's not typical.) It sounds like the biopsy said it was 1.9 cm, which would make it stage 1, which is good news.

I've never heard of anyone taking tamoxifen prior to surgery when there's a known invasive tumor. I've heard of some patients having chemo prior to surgery; I believe one benefit is that you and your doc can see which types of chemo the tumor responds to. (I'm not expert on this, so please feel free to read more on this topic). 

My docs keep saying that ER+ is good--you have options for taking tamoxifen or AIs (post-meno only). If you want some good other news, I have a friend who was grade 3 stage 3 with many positive lymph nodes (5, 6 or 7. I forget). She completed Tx and is now cancer-free for 12+ years and is doing great. 

Sounds like you're doing well mentally and emotionally. It can be hard waiting to meet with docs, so if you can, I hope you're able to practice some "distraction therapy" this weekend and do something fun. Sending you positive, healing vibes. 

ek25

Peggy-j,

Wow, that IS great news to hear about your friend.  I am true believer that not only is everyone's diagnosis different, but so is the response to treatment and dormancy in the body.  The drugs are also a lot better now than 12 years ago.  

You .may be confusing me (ek25) with hap_k who actually started this thread.  To clarify, I was only taking Tam on a clinical trial because I had only been diagnosed with DCIS.  You're right, I wouldn't have been treated prior to surgery if they had known I had an invasive.  They only found the invasive with MRI, which is why I agree with you, it's absolutely necessary.  In fact, if it weren't so expensive, I think it should be the standard of care rather than mammograms.  I know MRI is not perfect at everything, but I feel lucky that my invasive was found through MRI at such a small size (.5cm).  I hope that all means good things after my surgery Tuesday.  I only had one spot show on MRI and I believe they took the whole thing out with the biopsy since it was MRI guided biopsy.  The size of .5cm jives with the size they measured on the MRI image, so I think this "lumpectomy" will be really just to clean up the margins, plus test the sentinel node. 

hap_k

Peggy & SillyMama, Thanks so much for your comments. This is all helping to make sense of the puzzle.Everyone is great here.

ek25, I am so with you about losing my sense of attachment to these. After my husband's prostate cancer surgery last year (aggressive cancer, NOT slow growing as they keep chanting about PC as though it's always true) and his recovery, I don't want to spend our lives being in and out of operating rooms & cancer treatment centers. Ha has opted for no radiation even though he has a very low amount of cancer somewhere in his body. (He's fit and enjoying life and pc radiation Tx has a much higher risk facter than bc radiation Tx.)

I also don't want to be the beta tester for every whiz-bang new cancer drug. I fully applaud every woman who makes the choice to get the Tx they CHOOSE, but for me less time spent being treated is worth taking the bilateral mastecomy bungie-jump now. Where's the cliff? (Says the woman who is afriad of heights.) Sorry, just my bizarre sense of humor speaking.

Thank you for all your invaluable information! Thinking of you next week! 

Hap 

ridergirl

Your sense of humour may be one of your biggest assets going forward. Everywhere i go i think people think i must be nuts cause i just keep making jokes. Sometimes its the way i really feel and sometimes its a cover-up, but if i keep it up long enough maybe even i will believe it.

I am on tamoxifen with no likely prospect of surgery to come, but since i am er+ i guess theres hope that the tamox will at least keep it from growing.

hap_k

Ridergirl, The courage of everyone with bc astonishes me. Humor, sometimes black humor, is part of that. Smiling is infectious, and laughter can change the mood of a whole room full of glum people. So your humor is, I'm sure, an inspiration to everyone around you. Anyway, I'm smiling! I fervently hope the Tamoxifen will do its job & fast! I will be thinking of you. Thank you!

Hap 

bearcub

hap_k, ...we are on the similar roller coaster, stage 1, grade 3.  I was diagosed mid June, had a partial mastectomy and sentinol node biopsy July 12, healed great, clear margins so no more surgery.  My BS did a great job as I can hardly see a difference...nothing in my nodes or my LVI...off to the Onc august 17th I expect chemo because of the grade and then rads....good luck with your decision making, its a tough thing to do.

hap_k

Thanks Bearcub. Just wondering. Would you need the chemo because it was a partial mastectomy, instead of full mastectomy? Or would Grade 3 require chemo even if someone had bilateral mastectomy? I thought I might escape with just rads.

I really want to avoid chemo if possible...but it all depends on luck.... Good luck with the oncologist and your future treatment. I will be thinking of you.

Hap

bearcub

I won't know for sure until I see the Onc on the 17th, I thought I wouldn't have to do chemo either and just rads, but my cancer coordinator said anything over 1 cm...mine is 1.2cm and grade 3 is pretty much a for sure trip to chemoland.  I guess I will know on friday.  I will let you know.  Good luck!

hap_k

Uh-oh, I'm 1.9 cm & Grade 3. I was hoping that getting the bilateral mastectomy would keep me off chemo, at least. Sigh.  

Well, you're on your way, so fingers crossed for you. As a bearcub, you will come out of this just fine!

Hap 

shells43

Hi Hap, just think about the fact that once they puncture the tumor during the biopsy (in my case they took 5 core samples), some cancer cells are now on the loose in your bloodstream. Chemo isn't fun, but it beats the alternative. Some surgeons doing lumpectomies now remove the tissue track of the biopsy needle to be sure they haven't left anything behind. They follow with radiation to make sure anything gets zapped. Sorry you ended up in our world.