DCIS newly diagnosed with High Grade

Barreled Owl - I think you are right - the surgeon said he will find the primary tumor in surgery, or in the pathology after surgery. MO said it could be microscopic - it doesn't show up in any MRI or Mammo or Ultrasound. All in all at the least I have high grade DCIS with an axillary lump that was very large at 4.1 cm and is now 2.2. The DCIS size was originally 9mm and is now 4mm with six months of Femura. If you look at treatment for IDC at BCO, it says one approach is to shrink prior to surgery. So I'm good with a lumpectomy and axillary node removal, not sure if the ink thing involved with that as he plans to take out two levels of axillary, nurse said some sentinel. I'm not sure she knows, but it seems to be they would be involved...? He assured me none of his patients have ever gotten lymphedema. He does this by "not cutting below the axillary vein".

As for the top half of your reply, you lost me. Yes large lymph was biopsied and reported as malignant. Ok to keep asking questions.

This is great info and I am glad for the other's input.  They are correct from what I know clinically, but my point is your doctors should be sitting down with you and explaining this in detail.  This is a very high level of detail that I am sure 95% of patients do not understand unless their doctors spend an extraordinary amount of time with them.  Thank goodness for this forum, so glad I found it.

 It makes me nuts to think that they rush patients into making decisions right after diagnosis, then leave them on the back burner to stew about it.  They have GOT to know we are going to research it more and ask them more questions, that's probably why SOME avoid patients for so long after.  Not acceptable. 

Marijen,

I also think SpecialK is right..at this point I think there is no benefit in questioning why it took so long for you to get all the info.  There is simply some stuff that they do not know.  The tissue excision(s) that will take place soon will tell you a lot more.  You (as I when I have surgery) will have to "re-set" your mind from your original diagnosis.  As conditions change or are unexpected (good or bad), then your course of treatment should be re-evaluated just so you know you are still on the right path.

I hope this helps you and gives you some relief.  Stay positive and strong that you will get through this - stress does nothing but bad things for the immune system.  Thoughts are with you!

You have a good attitude!  I am hoping mine gets better

No results...just silence.  Maybe it's a good sign because all the bad news came so quick it was like "WHAM"!

I am assuming that the MRI is taking a little longer to be resulted because they churned the first one out with some errors and wrong patient information.  Now it is being looked at by two or three of them to make sure a full comparison between the two sets of films is done.  Only problem is I'm scheduled for an MRI-guided biopsy tomorrow at 10am. 

Nothing like putting the cart before the horse.

Hi Marijen:

Having lymph node surgery of any kind puts one at risk for lymphedema (even with the most skilled surgeon). It is important to educate yourself about the condition, self-care and precautions for people at risk. This is a good website about it:

Step-up Main Page: http://www.stepup-speakout.org

Step-up Risk Reduction Page: http://www.stepup-speakout.org/riskreduction_for_l...

(Note: Those who are at risk do not necessarily use compression garments. If compression garments are used for risk reduction purposes, it should be following consultation with and under the care of a lymphedema therapist, with a professional fitting and related education.)

See also here, from page 3, the section about precautions for people at-risk for developing lymphedema:

http://www.lymphnet.org/pdfDocs/nlnriskreduction.p...

Prior to surgery, I had baseline measurements of my arms taken using a device called a "perometer". It is completely non-invasive and takes about two minutes. Please ask whether you can have such baseline measurements taken before surgery.

You may also wish to request a referral to a qualified lymphedema therapist for a baseline evaluation, measurements and educational information before surgery if possible, or if not, soon after surgery. The step-up website also provides information about finding a therapist with appropriate qualifications.

Step-up Finding a Qualified Therapist page: http://www.stepup-speakout.org/Finding_a_Qualified...

BarredOwl

Hi Marijen:

Very good!

BarredOwl

Thanks BarredOwl for the links, very helpful and I am reading intently now for my own surgery, even though I am only having a sentinel LN biopsy as opposed to dissection/removal.  I guess it can happen in any situation though?  Did you find that the compression guards helped a lot?

I finally got my repeat MRI results first thing this morning:

The Left side with DCIS only shows one (large approx. 4 cm) lump as opposed to two on the first MRI (where I had it done on the wrong days of my cycle), so that's good because the surgeon recommended that if there were two, then it should be a mastectomy.  That we have agreed will try to remove with a lumpectomy, SLNB, and radiation because it is high grade.

The Right side showed a probable Fibroadenoma, as opposed to "highly suspicious for malignancy" before - but they /I didn't want to take any chances and I had the biopsy.  Couple more days to know if it is benign.  If it is I leave it alone, if not we remove that lump too.

No BRCA results yet but I think I am confident with this plan, surgery scheduled Oct 30th.

I took a look at my slides and saw the malignant cells (weird feeling looking at your own samples), but also saw the basement membrane solid and intact, meaning it looks contained or "in place", hence In Situ.  Definately a sort of feeling of relief, though not 100% diagnostic, only the complete lumpectomy will be.  The Pathologist was nice enough to offer a consultation since I am licensed ("free" if you can believe that, very nice doctor!) and described this very well.  I thought I would share to help others understand..

He said the tumor in the breast grows like a hand with fingers.  When you biopsy with a needle, you may sample the middle of the ring finger, but not the tip of the index finger.  That is why you can miss spots of microinvasion in a so-called classic-looking DCIS.  That is also why radiation is recommended even if the margins look clear on the lump.

Whew this has been a busy day, even though the biopsy was relatively painless..I feel exhausted.

One last question for everyone - now that I am preparing for this surgery..did you all try to totally give up caffeine, alcohol and sugar?  I have started drinking De-caf but am wondering if I should stop that as well.  And I don't drink hard liquor but man I miss my glass of red wine at night - that's what I miss the most.  Tried a non-alcoholic red wine with great reviews, might as well be drinking cider vinegar (blech)!  It's funny how eating or drinking this stuff now sends a feeling a fear that "you might make it come back after it's gone" over the little bit of pleasure it gives temporarily.  I know it's a trivial thing to think about, but it just seems like another (less serious) way cancer derails your life.  Maybe that will pass with time.

Monarch, I left a pathology question over at IDC if you come back. I also sent it to my BS nurse, haven't heard back yet.

No one told me I had to quit anything. I'm also not going to give up my coffee but am watching the sugar consumption very closely. I refuse to be perfect, it's too stressful. And I'm pretty sure I got cancer in the first place because I quit drinking and started exercising and eating healthy. Just joking I think.

Very interesting the hand with the fingers thing, another reason to go ahead with radiation in my case.

All this figuring is very exhausting, I bet you are working full time too. Let us know how your results come in.

April485 - you just said it best, "I'm still angry about it.." That's exactly how I feel about the guilt and anxiety that accompanies that after I am out with friends and have two glasses of wine with dinner...the numbers start rolling in my head.."if you drink more than a 5 oz. glass of alcohol a day as a woman then your cancer risk increases by blah blah blah..." Really hard when you have big drinkers in your social circles. Never knew how many of them picked up if you are having iced tea and they say "WTF??" Kinda funny I guess. Hell I never had kids because I didn't want any, guess I may have thought differently if it would have reduced my cancer risk significantly. Could have rented them out. Bad joke.

Marijen - I will try to take a look at the IDC forum tomorrow.

Are you saying that you changed your lifestyle for the better then got cancer? Terribly ironic if that's the case - you and I both know of those people that continue to abuse their bodies with smoking, drinking, drugs, food - yet they never get cancer. How is that fair? The only thing I can think of is that they usually don't look that good...

Yes I am working full time and trying to deal with all this too. Also a challenge to try to figure out how much time I can take off of work for surgery, how much I will need for radiation treatments, how to keep my projects going when I'm not going to want to work on them.. I have another folder just for the rules of medical leave, short term disability, intermittent medical leave, etc. I am required to exhaust my entire vacation time before I take a medical leave. But I need to keep my job and benefits. Go figure - work a ton, get cancer, get better, no time left to take a vacation, so just work some more? Crap.

BarredOwl - thanks again for the lymphedema precautions. Good rules to live by.

I am signing off for tonight - feeling lousy and tired and pissed off at the world (damn I need a glass of wine), so I think my posts are getting a little surly. Hope I didn't offend anyone

Glad I have you girls to talk to, it really helps!

Monarch, I agree with everything you are saying about work! My "vacation" was a lumpectomy? really? how vacationish was that exactly? did I get to go sit on a beach and lounge by a pool? nope, sat on the couch, taking pain medications and sleeping. Now I have to work more to gain back all the PTO I lost to this stupid disease, Yep, I feel your frustration. And no wine? who ever thought that was a good idea when we need to be able to relax? Jeeze.

On the other hand, I have great insurance and benefits and feel extremely lucky for that. Going back to work after staying home raising kids for 30+ years was quite the challenge.

Ok, I'm off my soap box for a bit, thanks for letting me vent. I was having a personal pity party all day.

Thanks for the thoughts everybody!  I guess I wasn't too far off from what others feel

I'm taking the day off tomorrow (since my medical leave will exhaust my vacation anyway...) and try to have a little fun before I am on the disabled list.

How long did it take to recover enough from the lumpectomy before you felt like you could return to work?  I am trying to set up projects that I have put off for years (non-physical)...ones that I may be able to do in the beginning right after surgery.  I am an avid gardener and it's going to be hard for me to be home and not want to work in backyard.  I know I have to resist the urge to overdo it (maybe the pain pills will help), and try to keep my arm immobile.

Annette - did you think your friend overdid it after surgery and that put her at a higher risk of lymphedema?  I read where the first 10-14 days is the most crucial to limit arm movement (the stumps of the removed nodes try to reconnect in superficial vessels in 4 days, in deep vessels in 8 days).  Also studies show delayed exercise decreases seroma formation.  But then I wonder how much to delay it.

Don't really want to try to recover from cancer only to walk around on egg-shells like a timid little mouse....

Monarch, somehow I didn't see your information on the lymph nodes first time around. Would you mind posting a link? I'd like to print it and or forward it to the surgeon. Thank you.

Thanks Monarch, how's it going today? I meant to read this and well I guess my brain is fried.... : ) TMI Will definitely follow the steps. Here's a question - how do we know there won't be cancer in the stumps?

Ok got it. I see notes from my doc are very small exercises, nothing major. I'm not working and I have the luxury of having plenty of time to think things out. Would have had a lot more time if I'd known that I was IDC and not DCIS. It was in the notes but I didn't see it. Watched a video on how tough oncologists have it

Anyone who had a lumpectomy need reconstruction of some sort ? I guess you have to wait until after the radiation because the skin and tissue may shrink or is affected my it.

My lump is large (about 4 cm) and I am a 36 C, wondering how disfiguring it may be, or how long I would have to wait after radiation. Hope that is covered by insurance. I know reconstruction with mastectomy was, but I'm trying to be conservative until I can't.

Hi everyone. I like many of you was recently diagnosed (October 15th) with DCIS comedo type with necrosis, nuclear grade 3 ER and PR positive. I just had MRI on Thursday and am meeting with breast surgeon and plastic surgeon next Wednesday. The breast surgeon has told me prior to the MRI that most likely a lumpectomy would be the best course of action, but that PS could do a reduction if I wanted. "Yes! Of course I do! Was my reply. Carrying these DD's around all day is exhausting. The thing that I'm not too happy about is that he said the PS would do the reduction in the breast that was getting the lumpectomy that day, but that I should wait 6 months to do the other breast, because of changes in breast size due to radiation. Have any of you ladies had any similar situations? I would really like to do them both at the same time and be done with it. Also, I see lots of different information about how much time I will need to take off from work. I'm a preschool teacher, so lots of lifting of 4 year olds. Thanks