IDC Slow Growing?

Beesie

Rachel, have you talked to your surgeon since surgery?  And have you seen the pathology report?  Because as I see it, there are two possibilities (at least) of what may have happened in your case.

Since you had given your surgeon approval to do an axillary dissection if necessary, this probably means that during your surgery, after the sentinel node was removed, it was sent to the lab for a quick check to see if any cancer cells were present. This is a common practice. What usually happens is that if cancer cells are found in the sentinel node, then the surgeon will be informed of this while he is still operating and he will go ahead and remove additional nodes (axilla nodes).  So what's possible in your case is that the sentinel node showed cancer and 6 additional nodes were removed.  If that's what happened, your pathology report should indicate that cancer cells were present in the sentinel node and then no cancer cells were found in the 6 axilla nodes.  If this is the case, then it's really questionable as to whether an axillary dissection is necessary now, since it would be pretty clear that the cancer moved no further than the first (the sentinel) node.

Another possibility - but less likely, I think - is that an SNB could not be done because the radioactive tracer and/or blue dye moved to too many nodes (see my earlier post, above).  As a result, the surgeon removed all the nodes in the first clump, or all the nodes with tracer and/or dye.  In this case, even though cancer cells were only found in 1 of the 7 nodes, it would not be as certain that the cancer has not have moved to other nodes.  That might suggest the need for axillary dissection.  The question however is whether the findings will change your treatment.  If the plan is that you will have radiation, including radiation to the nodes, and chemo, then finding out that you have more positive nodes probably wouldn't change the treatment.  But if there is no plan to do radiation on the nodes and/or if it's questionable whether you need to get chemo, then finding out that you have more positive nodes would impact the treatment plan. 

So I think there is a lot that you need to find out, both from the surgeon (specific to how the surgery on the nodes was done) and the oncologist (specific to whether his treatment recommendation would change if it's discovered that you have more positive nodes).  One other thing you need to know - maybe you do but it's not listed on your diagnosis line - is your HER2 status.  This can also impact your treatment plan.

Good luck getting the information you need to make your treatment decisions.

rachel5738

Hi Beesie--thanks for the response. No, I haven't spoken to surgeon since the surgery--he was away on vacation. I meet up with him this Friday, I meet up with Radiation doc this Thursday so I will ask regarding the plan for the radiation. The Oncologist that I met up with last week seemed to indicate that it was just a sentinel node biopsy--at the time, I came armed with 1000 questions--he answered every one--but I didn't ask about the nodes.....go figure. I have learned more now and can at least ask the "right" questions. I have HER2 Neg. I will be going through 4 months chemo, 1 month break, 1 month rads, 5 years tamoxifen.

Beesie

Rachel, the procedure that was done was a Sentinel Node Biopsy, so I suppose technically you could say that any nodes removed during this procedure were "sentinel nodes".  But the definition of the sentinel node is that it's the guard node, the node that's up front and that everything entering the nodal system must pass through first.  From the standpoint of how an SNB is supposed to work, there really can't be 7 "guards" because that defeats the purpose of doing an SNB, which is to remove only the one or two nodes guarding the front of the line.  If you are taking out 1/2 or all of the nodes in the line, then what was the point of doing an SNB?  So if a surgeon is doing an SNB, it makes no sense to remove 7 nodes unless 1) there is no clear sentinel node, or 2) the sentinel shows cancer and therefore more nodes need to be removed to see if the cancer has moved on.

Good luck with your appointments this week and let us know what your other doctors say.

JanetfromPgh

I got my results today but don't really have all of the information that you guys have at the bottom of your posts.

The nurse called to tell me that I have DCIS with microinvasive cancer, that the margins were clear and no lymph node involvement.  She said that I can get the rest of the details from the surgeon when I see him on Monday and that I need to make an appt with an oncologist to see if I need drug therapy along with radiation.  My concern is that I come from a family of bad genes.  My father and grandfather each had a heart attack at the age of 49 which killed my grandfather.  My father lived for another 10 years.  My Mom had a stroke at 54.   I think that the chances of me having heart attack or stroke is too scary to take the drugs.  How do I find an oncologist?  Are there breast ones or just cancer ones?  Any thoughts would be appreciated. 

lago

Janet I had mammograms yearly. Even a few ultra sounds 4 years ago when the thought there was something suspicious. Now 4 years later I have IDC 6cm x 4 cm (maybe even bigger). To be honest they don't know for sure till they do the surgery. Tumors can hide. I have very dense tissue so that was a huge part of the problem… granted I personally feel this should have been caught at least a year ago but that's another story.

 Yes cancer can spread to other body parts even if it isn't in the lymph nodes. This is why they do chemo and other drug (homone) therapy.

 DCIS usually has a good prognosis. Microinvasion might me that chemo, radiation and drug therapy will be used. The more invasive the cancer and the larger the tumor the more agressive the like to get.

They will monitor your heart and also take into consideration your family history. Just think of it this way. If they don't get rid of the cancer you won't even have a chance to have a heart issue. If they know you have a heart issue many are treatable with life style chances, drugs and at the extremem surgery. It appears that treating a heart issue is easier that treating cancer.

I too worry about my heart and what they are going to do to me. I know they are going to be agressive given my diagnosis so far… and it could get worse or better but I won't know till they go in and remove it. I'm just going to have to wait and see what happens.

You are scared now because you have no information. Use these boards to help you ask your doctors question. Your doctors are the ones with medical degrees and experience. They can educated you best.

You gyno should help you find a breast surgeon. Read this as well. It's 2 pages: http://www.webmd.com/breast-cancer/guide/doctors-treat-breast-cancer

List of top ranked hospitals for cancer in the US:
http://health.usnews.com/best-hospitals/rankings/cancer?page=5

Hang in there. I was freaked out for 3 weeks and I'm usually a very calm person. It's a lot to digest in a short period of time. 

Beesie

Janet, clear margins and no lymph node involvement is great news.  As for the microinvasion, if that's all the IDC you have, then your treatment will not change vs. what it would if you had pure DCIS.  By definition, a microinvasion is 1mm or smaller in size - and that's tiny!  So a single microinvasion, or even 2 or 3, won't warrant chemo. In fact, usually chemo isn't recommended for tumors that are less than 1cm in size (that's 10 times larger than a 1mm tumor) unless the cancer is very aggressive (triple negative or HER2+). 

As for drug therapy, that would likely be Tamoxifen.  But the fact is that if your cancer is ER+, Tamoxifen will be recommended for you whether you have pure DCIS or whether you have DCIS plus a microinvasion.  It's your choice whether you take it or not.  The key is to understand your risks and the benefits you would get from Tamoxifen, as well as the risks that you would incur by taking Tamoxifen.  Then make your decision based on that. 

Tamoxifen provides 3 different benefits:

1. It can reduce the risk of a local recurrence in the breast which had BC.  Recurrence risk after a lumpectomy can vary considerably from one individual to another, based on margin size, aggressiveness of the cancer, age of the patient, size of the area of cancer, etc..  So you need to find out what your recurrence risk is based on your diagnosis and pathology. 

2. It can reduce the risk of a distant recurrence (i.e. mets).  With only a microinvasion, your risk of distant recurrence will be very low, probably in the range of 1% (I have a microinvasion and that's what I was told).  But talk to your oncologist about this to get his or her assessment of your risk. 

3. It can reduce the risk of getting a new BC in either breast.  For any of us, having been diagnosed with BC one time, our risk to be diagnosed again goes up vs. the average population.  But what your risk is depends on many personal factors, such as your age, your personal health history, your family health history, etc..  Again this is one that your oncologist should be able to estimate for you. 

As for the risks from taking Tamoxifen, generally it's believed that 2% - 4% of women will have serious side effects from taking Tamoxifen.  Whether you fall on the lower side of that risk or the higher side depends on your age and personal & family health history.  And whether this is an acceptable risk or a too high a level of risk depends on how much benefit you'll get from Tamoxifen, and that depends on your risk level in each of the three categories I mentioned earlier.  

Lots of women choose to take Tamoxifen, but many choose not to take it.  I had DCIS with a microinvasion and had a single mastectomy and I don't take it but I made that decision after researching it thoroughly and truly understanding my risk level and the benefit that I would get from Tamoxifen.  So keep in mind that this is your decision. Talk to the oncologist, get all the facts and then decide what you want to do (or not do).

Hope that helps.

JanetfromPgh

hi lago..thanks for responding!  I still can't wrap my head around how they can't detect the cancer either.  I wonder what the heck this dimpling is then on my chest if it is not related to cancer.  I find out more information here on the boards than I do from the doctors.  Today was the first day that anyone mentioned to me that I should be seeing an oncologist.  She seemed surprised that I didn't already have one.  I already have a BS (woo hoo I learned a lingo!) but need to find an oncologist and radiologist now.  Magee Hospital is 42nd on that list for BC but 6 for female cancers.  Thanks for the info.

Beesie:  The nurse did say that it was estrogen positive.  Why if you had DCIS would you have a masectomy?  They keep telling me that this is the "best" cancer to have?   Does having severe PMS have anything to do with getting BC?  I saw an herbalist a few years back who told me that my breasts being so sensitive (and they still are) about 10 days before my period that I have to wear a tight bra so they don't move at all..forget about jumping or trying to exercise.  He said that I needed to balance out the excess estrogen with a progesterone cream.  I never did this but have you ever heard of that?  I was wondering if I could do that instead of taking the tamoxifen?   

Thanks so much for helping me to sort this out in my head.  My head is spinning and still don't understand all the terminology but I'm learning.  My boob and underarm are completely black and blue and underarm is swollen.  My lumpectomy was last Friday.  Is this normal too?

THanks!!! 

Beesie

Janet, it's actually not that unusual for women with DCIS to need to have a mastectomy.  The good news with DCIS is that the cancer cells are confined to the milk ducts, which means that it cannot spread outside of the breast.  The bad news with DCIS is that as the cancer cells multiply (as cancer cells are prone to do) often they spread out through the ductal system of the breast, rather than form a solid lump in one spot (as invasive cancer is more likely to do).  As a result, DCIS is more likely than IDC to be multifocal (more than one area of DCIS within the same quadrant of the breast) and multicentric (more than one area of DCIS across more than one quadrant of the breast).  For those who have large areas of invasive cancer, because chemo will be required anyway, sometimes chemo is given prior to surgery in order to shrink the lump/reduce the area of cancer.  If this is successful, then a lumpectomy can be done instead of a mastectomy.  But for those who have DCIS, chemo is never required (that's the good news!) but because of that, there is no way to shrink the area of DCIS.  So women with DCIS are more likely than those with IDC to have a larger area of cancer, and there is no way to reduce the size of the area of cancer.

In my case I had multifocal, multicentric DCIS that basically spread through most of my breast.  The fact that I had so much DCIS doesn't change my prognosis - pre-invasive cancer is pre-invasive cancer, no matter how much you have - but it still had to be removed.  And that's why I had to have a mastectomy.

No, generally speaking having PMS does not have anything to do with getting BC.  Approx. 60% of women have fibrocystic breasts, which is what causes the soreness and sensitivity of your breasts before your period.  There are certain very specific conditions that are associated with having fibrocystic breasts that may increase BC risk but as a general rule, most women who have fibrocystic breasts are not at increased risk. 

rachel5738

Hi Beesie--Just for update, met surgeon yesterday and no more node removal--they explained to me that 3 of the 7 taken were sentinel nodes (1 was positive for cancer), the remaining 4 were axillary nodes (Doc explained the nodes work up from your breast area like a pyramid--they took all the Level 1 nodes). Therefore, no more surgery required--which was great to hear. I had prepared in advance to present facts about why no surgery and didn't need to do anything with that (go figure--now I feel expert on sentinel node/axillary dissection!). Now onto next step, will meet Oncologist on Monday AM for blood and exam--then chemo (FEC-T) looks to be scheduled for next week. I also have bone scan, US and genetic testing in the next couple of weeks. The genetic testing is because of my two cancers in less than 6 months that are unrelated in the sense of cancers---but they want to look for any gene that I am carrying especially since I have two children. I have read that the test is nothing but the results can be hard because if they do tell you something--the reprucusssions can be hard to swallow. Anyone know anything about the genetic testing?

So I am moving from surgery status to now starting chemo.....I also met with radiation doc this week and will have 25 sessions (with 5 boosters). This will all start one month after the end of chemo--chemo is FEC-T every 3 weeks for 6 treatments (last about 4 months) so that takes me to about Christmas time! Next step is figuring out the hair--I already looked at a wig and because I was delayed didn't do anything more about it--have to figure that out next. Have to go get my teeth cleaned in the next couple of days--as Oncologist said he would recommend to avoid while on chemo--and also go and buy a bunch of things that will help with SE (took advice from this site!). This cancer is a full-time job

Beesie

Rachel, thanks for the update.  I had suspected that with 7 nodes removed, your surgeon had already taken some axillary nodes.  So it's good to hear that you won't need more surgery, and it's particularly good to hear that there was no cancer beyond the one sentinel node. 

Is it BRCA testing that you are having?  Are you being sent to a genetic counsellor?  I had my surgery at PMH but was sent to a genetic counsellor at Mt. Sinai for my testing.  Prior to meeting the counsellor, they mailed me a very long form that I had to complete and send back.  It asked about family cancer history going back to my grandparents, on both sides of the family.  When I met with the counsellor, she told me what she thought the risk was that I did carry the BRCA mutation, and she explained what the test results would mean, both if they were positive and if they were negative.  Then she asked me if I wanted to go ahead with the test.  I said "yes" so I was sent for the blood test right away.  That's all it is - a simple blood draw.  If it's BRCA testing that you are having done, then it will take months - up to 6 months if not more - to get the results.  This is because the company that has the patent on the testing has only authorized one lab in Canada to do the testing so there is usually quite a backlog.  My counsellor did say that if I wanted the results more quickly - within a month - I could pay to have the sample sent to the U.S. lab.  If I recall, the cost would have been $250.  I'd already had my surgery and I figured that if the wait was long, it would be easier to put it out of my mind, so I didn't pay for the quicker results. Based on my family cancer history, I was at risk of carrying the gene from both sides of the family, but in the end, my results were negative.  The counsellor did tell me that with the types of cancer in the family, another genetic link could be Cowden's syndrome.  Cowden's is very rare and my family doesn't seem to have the symptoms, except for the cancer, so I declined being tested for that. 

Hope that helps!  And good luck with bone scan and other tests - hopefully the results are all good news!

JanetfromPgh

hi beesie...maybe I'm not understanding correctly, but my surgeon explained to me that IDC starts as DCIS..that all ductal carminomas start as DCIS but that when the cells break through the walls then it is considered invasive.  Based on that assumption, I was thinking that maybe my microinvasion was "caused" when the radiologist did my core biopsy, disturbing the cells when pulling it out.  Have you heard of this?  Maybe it is the pain meds but my mind is mush.

I have no feeling under my arm which is scaring me.  My incisions hurt worse now than they did a week ago.  I can't lift my arm either.  I went to visit my sister in the hospital and trying to get the parking lot ticket out was a hoot for anyone watching.  I ended up having to back out..walk up and take the ticket and the drive through.  My steristrips are still attached too.  Do I take them off or let them fall off on their own?  I looked at my discharge papers but it says nothing about this.   Thank goodness you have answered my posts.  You have been my angel.

Beesie

Janet, I'm not sure if all IDC starts as DCIS but certainly most cases of IDC start as DCIS.  As your surgeon explained, the DCIS cancer cells breaks through the milk duct and become invasive cancer cells.  So it's the same cell, but it's moved from being confined to the milk duct to being out in the open breast tissue.  However there is one additional change to that cell, a biological change, that happens to the cell that allows it to break through the duct and survive in the open breast tissue.  This is something that has really only been understood scientifically for the past couple of years.  A DCIS cancer cell requires this one last change before it can become invasive. 

What this means is that a biopsy of DCIS can not cause an invasion to develop.  A biopsy can move a DCIS cancer cell into the open breast tissue but the cell will remain DCIS and it won't survive.  This was sort of understood before - so many women have biopsies for DCIS and yet the vast majority aren't found to have invasive cancer when their lumpectomy or mastectomy is performed - but it's only recently that the biology behind this has been understood.  This article explains it:

http://www.medpagetoday.com/HematologyOncology/BreastCancer/9348

Don't worry about how your underarm feels or the fact that you can't move your arm much.  That's normal. We aren't warned about this but if you have any nodes removed, even just an SNB, you are likely to be numb under your arm for weeks or months (or even longer).  I was numb from my underarm to my elbow for 4 months and completely numb in the underarm area for 6 months.  That's not uncommon at all.  Additionally, a couple of weeks after surgery I had these really sharp shooting pains running from my underarm down my arm - very painful but quick.  This is normal too - it's just the nerves regenerating. 

As for the steristrips, usually the instruction is to let them fall off on their own.  Remember too that you are only one week from having had surgery - and while from appearances it may not look like major surgery, it was!  I remember reading somewhere that it takes 6 weeks for incisions to heal to approx. 90% of the strength of the original skin.  That's why after surgery we usually get the "no heavy lifting, no strenuous activity" rule for 6 weeks.  So be careful and try not to overdo it. 

Luah

Rachel: As always with her posts, Beesie has given you some superb information! I had my BRCA testing done through Sunnybrook. Yes, there is a long questionnaire to help them assess your risk and whether or not you even qualify for the testing. I too met with a genetics counsellor, who described the pros and cons, then it was my decision whether to follow though or not. I did. I was fortunate to get my results within 7 weeks; I put some pressure on them because it really affected my next treatment decision: whether or not I would go through with rads as planned (following my lumpectomy) or opt for prophylactic mastectomy.  

One thing the counsellor stressed however, is that BRCA 1 and 2 are just two genes that have been discovered to date; it's certainly possible and perhaps likely there may be others. So even though I tested negative and was glad about that, I know my family history seems to increase my risk for certain cancers. So was it worth it to get tested? Yes, for me it was, because I'd rather have some albeit limited information than none. 

rachel5738

Hi Beesie/Luah--Thanks for shedding some light on the genetic testing. I have my appointment at end of August. Although we don't have a strong family history of cancer, my two diagnosis in one year were enough to warrant them to refer me. I'll check it out for sure.

Anonymous

Back to your first question. I was told (at first) I had IBC, then after my lympectomy I was told it was IDC. (However my BS, PCP, and Onc (2) all believed I still had IBC and for some reason the biopsy failed to show it.

I had NO sign of BC on my pervious mammogram, then within a month I had a tumor the size of a golfball. Rather than performing a needle biopsy, my BS recommended a lumpectomy, (as this "lymo had to be removed) followed by chemo, a mastectomy, more chemo and rads. However I had no rads, as the cancer did not spread into my lumpnodes. (removed 20+) 

I wish I had the rads as I would feel some what more comfortable in beating this monster. I have TNBC and the only thing that can kill it is "suppose" to be chemo. (Another reason they cancelled my rads). I should add, I have a pacemaker that had to be relocate specifically for the rads, and then I had none. The relocation has caused a lot of other issues, implants does lay right, constant pain as it is now located under the arm muscle.

Jean

ninap7

WHAT IS FECT

Luah

It's a chemo regimen; the drugs are: Fluorouracil (5FU), epirubicin and cyclophosphamide (FEC), followed by Taxotere.

ccb

I'm new to this board and am finding the discussions helpful.  There is so much information that it gets confusing. I have had annual mammograms since I was in my 30s (first lump turned out to be nothing and I was 30 at the time) now 17 years later, I found another one (other side).  Turns out it's 2.4 cm, with a smaller one that is 1.2 cm - last year these did not show up on a mammo.  Does that mean it's fast growing? I don't know.  The core biopsy results say it's IDC, but I have not seen the actual pathology report. I see the surgeon tomorrow and hopefully I will have some answers.

Luah

ccb:  The aggressiveness of any BC is suggested by the grade, rated on a scale of 1 to 3 (actually rated on 3 factors, each 1 to 3 then totalled & classified). Grade 3 tumours are usually faster-growing.  Unless you are in Canada, your biopsy path report should tell you the grade.

I had 2 tumours very similar in size to yours, also not seen on a mammo 10 months earlier. In fact, they were not clear on a diagnostic mammo at the time I found the lump.  They ended up being grade 3 and triple negative, which is known to be an "interval" cancer, fast growing between scans.

Yours could be similar - or it could be slow-growing in a dense area of breast tissue. Mammos are not good seeing through dense breast tissue.  Hopefully your surgeon will go through the path reports with you and explain everything.  Ask lots of questions! 

flannelette

Greetings, just stumbled onto this thread and am so impressed by the information here. I have a question someone might be able to answer - or at least make an informed guess. I was scrolling way back through stuff about how many years it takes bc to turn into a tumor.- postings by Beesie.

In 1989 I was diagnosed with what was then called chronic fatigue and immune disfunction syndrome. I was part of a reasearch study by the Nightingale Research foundation in Ottawa, on chronic fatiigue, had many tests done on blood and urine. though I was VERY sick, the only abnormal reading was that i had no - ZERO - natural killer cells.

In 2008 - about 19 years later - guess who gets diagnosed with a 6 inch whopper??? Even though I've had annual mammograms since age 40 (was then 61) .

How bout that maybe since there were no natural killer cells, and who knows how many years I went without them, there was nobody on first line of defence?

Here's another strange thing. There was bungling with my paperwork. Between bad mammogram and MX was 4 months. As soon as i figured i had bc after the mammogram - and why not, cause my sis and mom had it too - I started taking indole-3-carbinol, plus, and i would never recommend this, got a juicer and started drinking cabbage juice, with the idea of it having lots of I3C. it pretty well ground the heck out of my digestive system and i had diarrhea for 6 weeks till the digestive top layer regrew.

so, at surgery, my surgeon takes out a 4 inch whopper, that he says was "a lot of DCIS mixed up with IDC". to me, the miracle kicker was - no lymph node involvement, no vascular, margins clear.

had chemo - cause goodness knows you'd think there must be some cancer cells floating about, also rads. Now arimidex. Knock on wood, who knows waht's going on where, but so far so good.

Rads ended 2 yrs ago.

I am so curious - and grateful - but not a researcher. any comments?

many thanks,

Arlene

Dabulls23

Hey Arlene nice to meet u...DB here..

My case my right breast has never felt normal..My nipple was never formed..I am 56 and married for 36+ yrs..Never felt comfortable with my right breast..For yrs I had brought it up to my family, OBGYN abt how I felt there was something inside which hurt me even with lil touch..Never let my hubby touch it when being intimate..in last 16 yrs I had reoccurring of syst in my right breast twice which had to aspirated but benign..Suddenly  past june with mamo they found tiny tumor 1.5 cm BC..I can relate to you..

What I want to know is how is Arimidex working for you?  I took it for 6 wks with horrendous SE many of them...Finally my Onco told me to stop as of past monday dec 21st...I see him jan 28th for next step...

Good luck and god bless..

DB23  56yrs young 

flannelette

Greetings DB23 - I tolerate it. that's it. Made me fast forward from 63 to 83, in terms of body stiffness, I also developed carpal tunnel syndrome but oddly that has passed. have trouble sleeping. it's hard for me to distingusih between my arthritis esp in feet, and ses of arimidex. Was given the choice to go to tamoxifen instead, but when I read the possible ses, also knowing that arimidex generally works better, decided to stay on it. 

There are studies now showing alternation between arimidex for a few yrs and tamox is fine. but haven't followed the ins & outs and am asking my onc today. Need a bone density scan soon, have been now 2 yrs on it, to see ifit has been leaching calcium.

I do believe i have the normal ses, and that exercise (aerobic & stretching and weight-bearing) really helps. i try for that twice a week at a great class nearby, but hate workouts at a gym.

I've also gained weight.

Of all my txs this is the one that in the long run affects my life the worst - the others were over and not bad at all.- MX, chemo, rads.

Still, I firmly believe it's the right thing for me to do.

I'm pretty sure different side effects and their severities come and go - as in my carpal tunnel. My skin is suffering and i think I look older. but am investigating creams etc for that. Dry as bone down south, but am afraid to try the estring....though my oncs say it's ok.

You may have seen there are threads just for arimidex under Hormonal Therapy forum?

Merry Xmas and good luck with alternatives,

Arlene

Merry