14cm DCIS plus multifocal microinvasive IDC

Bravemama34

hi ladies.  i was diagnosed less than 3 mo ago and since then had bilateral mastectomy and i'm in middle of chemo (TCH).  i had a palpable lump on my left side but had just finished breast feeding a few mo prior so i thought it's a blocked duct but eventually couple months later i got a mammogram which showed extensive multifocal DCIS with possible microinvasion and final path after bilateral mastectomy shows multiple areas (5-7?) of microinvasion each less than a mm with 1/4 nodes showing micromet.  her2 +++

i am wondering if there is anyone else out there with extensive DCIS (almost 14cm on the left and 0.2cm on the right) and multifocal microinvasice ductal carcinoma.

i have a two year old and was trying for the 2nd one when this happened.  i understand my diagnosis is very rare.  i have seen the other thread on micoinvasive with her2 pos but i mostly see one or two microinvasions and mine is a lot more and i also have never seen anyone with such extensive DCIS (14cm, grade 2 and 3).  i am very worried about my prognosis, recurrence and overal seeing my son grow up.

TB90

Bravemamma: Sorry you have to be here and that you are dealing with this. You do seem to have a lot going on in your breasts but now they are gone! The size of your DCIS is not as much a factor as the invasive cancer, so I would not focus on worrying about that. Focus on the fact that no matter how much is going on (and your dx is busy to be sure), your bc is still all early stage and your treatment seems very thorough. You are doing everything you can to treat this and it was caught very early. You can instead focus on watching your beautiful two year old son grow up. I know how much time we spend worrying about what may never occur, but that is the worst part and inevitable part of having bc, especially at a young age with young children. Right now your future is very hopeful and please enjoy being a mom. We are now faced with the reality of our mortality, but your future is as unknown and as optimistic as anyone's. No one knows. Enjoy the wonderful days and moments that you have.

Bravemama34

TB90, thank you for your response.  i re read my post and its so wordy and confusing.  very obvious that i am having a hard time organizing my thoughts and i'm all over the place.  it's been a tough few months. 

i'm having a tough time finding someone with similar diagnosis to relate to.  somehow your post made me feel better.  i need to stop thinking about that DCIS. 

but even my doctor was suprised that i have node involvement with such small microinvasion.  her disbelief was not comforting at all.  i'm suppose to get radiation after and even though i was only moderately pos for ER, i am on lupron and will be on AI after.

BarredOwl

Hi Bravemamma:

Did your medical oncologist discuss the possible option of chemotherapy plus trastuzumab with you, in view of the HER2 positive lymph node micrometastasis? I am not second-guessing any treatment decision already made, but just want to be sure it was considered.

Given your young age and bilateral disease, did you also consult with a genetic counselor?

I had a 1.5 mm IDC plus few microinvasions on the right in ~5 cms of DCIS, which extended across the entire breast. HER2 status unknown.

BarredOwl

Bravemama34

hi BarredOwl,

I am in the middle of chemo with TCH and will do radiation afterwards.  and my genetic testing was negative.  i'm the first in the family -both sides-  which makes me wonder it's pregnancy related.   i have also started lupron shots and will start either AI or tamoxifen after

BarredOwl

Hi Bravemama34:

It sounds like you have all bases covered. Hope you tolerate all treatments well.

BarredOwl

Bravemama34

BarredOwl, looks like you had bilateral disease as well. any genetic component? what chemo did you get and if you dont mind me asking how old were you at diagnosis

BarredOwl

Hi Bravemama34:

I was 52 at diagnosis in 2013. I was peri-menopausal. At that time, I tested negative for BRCA1 and BRCA2. As more information becomes available about other genes involved in breast and ovarian cancer, I am considering whether to seek broader panel testing, in light of my bilateral disease and family history.

The HER2 status of the invasive disease was unknown (1.5 mm IDC, plus a few micro-invasions, 0/4 nodes), and neither chemotherapy nor endocrine therapy were recommended for the invasive disease.

BarredOwl

Bravemama34

I wonder if you were not offered chemo due to no node involvement.  where you hormone receptor neg? is that why no hormonal therapy?

BarredOwl

The node-negative status was important, but the NCCN guidelines do include the option of systemic therapies ("consider" or "±") for some very small (Tumor ≤0.5 cm, including micro-invasive), node-negative (N0) tumors. Unfortunately, I did not have ER, PR or HER2 status information for the 1.5 mm IDC (insufficient tissue remaining after multiple stains were used to determine invasion). With no ER, PR, or HER2 status information available for the IDC, there was no solid information to rationally direct the selection of treatments (endocrine therapy, chemotherapy and/or HER2-targeted therapy). At the time, I checked the NCCN guidelines applicable to my case for all possible combinations of hormone receptor ("HR") status and HER2 status. With such a small tumor (1.5 mm IDC) and negative nodes (N0), the various options were:

No adjuvant therapy (if HR- HER2-)

Consider adjuvant endocrine therapy (if HR+ HER2-)

Consider adjuvant chemotherapy plus trastuzumab (if HR- HER2+)

Consider adjuvant endocrine therapy ± adjuvant chemotherapy plus trastuzumab (if HR+ HER2+)

Whatever it was, the recommendation I received for no systemic treatment for the IDC was within guidelines (either no adjuvant therapy or consider certain therapies). Luckily, this doesn't happen too often.

BarredOwl

BarredOwl

By the way, if you are interested, the professional version of the NCCN Guidelines for Breast Cancer is available with free registration here:

NCCN Guideline for Breast Cancer: https://www.nccn.org/store/login/login.aspx?ReturnURL=https://www.nccn.org/professionals/physician_gls/pdf/breast.pdf

In your case of hormone receptor-positive, HER2-positive disease, see Chart BINV-5, at page 17 of the pdf document, for the general guidance based on hormone receptor status, HER2 status, histology (e.g., ductal), tumor size, and nodal status.

BarredOwl

grainne

hi. I had an area of dcis at 1.3cm, with 3 or 4 foca of tubular idc inside it and 2 satellite foca outside, none of which exceeded 2mm. Like you, i can't find anyone with a similar diagnosis. Anyone else on the tubular thread has a single tumour. I can't help wondering if it affects the prognosis. Why should these tiny tumours all develope at the same time? I did read somewhere that the presence of dcis with idc is a good prognostic indicator and my bs was delighted with my path results. I remain worried about it, however.

I'm sorry you are going through so much so young. This is a hard road to walk but it needn't be a lonely one. This is a great place to allow yourself to reveal the depth of your fear and anxiety which i, at least, feel unable to do anywhere else. Your invasive elements do seem to be minimal but any cancer at all is a complete bodyblow. You will see from reading other posts that things gradually get better. We learn the terminology and the right questions to ask and lose the sense of being lost in a foreign country. You will see your little boy grow up.

Bravemama34

thank you for the info BarredOwl

Grainne, thank you for your words. It did make me feel better. It's hard to cope when I can't find a group to fit it. But looks like we both have similar diagnosis. Do you remember where you read about DCIS w IDC having a better prognosis. Any comforting info helps

Hard to see any light at the end of tunnel. I pretend to be mostly ok around my husband and son but inside I'm a totally lost. I can't help thinking the worst though I'm very aware it doesn't help. I sure hope to see my son grow. Im even happy to just see him off to college and an ad

grainne

I'm not very good at links. Www.researchgate.net/publication260251965

Failing that, try googling dcis w idc better prognosis.

i know it's hard but remember dcis is stage 0. It's a potential threat rather than a present one and it's all gone now. We all think the worst... sometimes it seems inevitable it will come back. But it just isn't. We live with a degree of anxiety, i suspect more or less permanently and at the moment i cant imagine a day where i don't feel fearful at some stage. But mostly i feel ok. I have a life to lead and it hasn't stopped. I truly think, with your diagnosis, you will be grand.

Bravemama34

here's a link i found

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2865763/

grainne

That's rather comforting to read. Barred Owl, if you are still reading this thread, do you have any info about the prognostic significance of multifocality? It doesn't feature on any of the prognostic calculators but i can't help thinking I'd rather have 1 bigger tumour than lots of little ones!!

how are you doing today, bravemama34?

BarredOwl

Hi grainne:

From what I have seen, the studies in this area are not entirely consistent, particularly with respect to impact on local recurrence. I have a few references, but I do not know how representative they are and I am not sure what the current clinical view would be. In addition, very small tumor sizes ("T1a" Tumor > 1 mm but ≤ 5 mm in greatest dimension) are not very common and can be poorly represented in such studies.

Those with pending treatment decisions should not hesitate to seek current expert advice, in case it may impact local or systemic treatment decisions for some.

BarredOwl

grainne

thank you. Tubular tumours don't seem to be similar to any others. I've read that multifocal tubular tumours may make lymph node involvement more likely but i haven't seen anything about it making recurrence more likely.

You have said many times you aren't medically qualified. Do you have a background in science or statistics? I suspect many of us follow you around the various boards looking for reliable info and help. i think of you as a wise old (barred) owl, makng sense of the incomprehensible and feeding the rest of us with our needy little open mouths, ckucking and squawking anxiously in the nest!

I exaggerate, but i for one am very grateful.

Bravemama34

I'm better during the day. Nights are harder for me. The fear creeps over me. I go check on my son a million times. Thinking how would he grow up without mommy. Thanks for thinking about me grainne.

Overal though I agree that it's probably better to have one larger tumor than multiple little ones.

grainne

I'm so sorry. Please, please remember dcis is NOT invasive cancer and does not spread. Also, you have MICROinvasion and MICROmets.

. Wandering the house in the middle of the night is a bleak and lonely thing to do. If i waken, i listen to the radio through earphones. A fairly dull audiobook usually sends me off again or, at worst, stops me thinking.Don't forget you have gone through a lot physically as well as mentally . Accept that at the moment you are fragile and scared. Have faith. You will feel well again and you will begin to trust in the future..We are all hostages to fortune when we have children whether we are well or not..if we can learn anything from this hateful disease it can only be that we must live in the moment. If you can do that, it would be a great gift to carry into your happy and healthy future.

BarredOwl

Hi Bravemama34:

It is much harder early on. When I was first diagnosed, my sister and a friend both suggested "mindfulness" approaches, to learn to focus on your breathing or being in the moment. You can learn about mindfulness and begin practicing it at any time, and you don't need to be a zen master to benefit. For an introduction and some simple techniques (e.g., seated meditation, walking meditation), see for example Section I of this book, used by many hospital-based stress reduction programs in the US:

Kabat-Zinn (2013), "Full Catastrophe Living (Revised Edition): Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness"

https://www.amazon.com/Full-Catastrophe-Living-Revised-Illness/dp/0345536932

There may be mindfulness programs at your treatment facility. Also, recorded guided meditations are available.

I also listened to ocean sounds to help fall asleep (you can search "ocean sounds" on Amazon or iTunes to find something you like and play it from your phone).

BarredOwl

Bravemama34

Dear BarredOwl, your comforting words and advices means a lot to me. Finally someone that really understand.

I'm trying this as I'm laying in bed and getting my third chemo. My husband with me. We got married 4 years ago. He is good man.

I am thinking about what you said. You are right. In the last three months my body has been through so much. Bilateral mastectomy. Many infections. Removal of expanders. Months on iv antibiotics which is still going on. Hair loss. Hot flashes.

A few months ago we bought a million pregnancy and ovulation tests. It was time to expand our family. We started looking at houses. A bigger car. Everyone says I have to morn the loses and move on. How? But I don't expect anyone to understand anymore. Quiet honestly I wouldn't understand myself.

Thank you for the book suggestion. I will read it. I would like to be able to hold on to something and maybe the advices in that book would help me.

I hang out in the stage IV forum a lot. I don't know why. I have realized that I'm not mentally as strong as I thought I am and this bothers me. The last thing I want is a weak mom and a depressed role model.

Why do u think such small microinvasion already metastasized to my lymph node. I can't find anyone w microinvasion and micro mets to lymph node.

BarredOwl

Hi Bravemama34:

Being younger, you are facing many challenges that I did not. I did find myself obsessively reading and searching for information. I was looking for clues to answer questions like exactly what caused this or to predict my outcome, neither of which is truly knowable. Early on in the process, I noticed that reading posts or papers in the evening increased the chances that I would lie in bed worrying late into the night (ditto if I woke up in the middle of the night, which happened a lot because of surgical issues). So for some time, until I was less prone to worry, I made a rule to stop reading any breast cancer-related material after ~8:00 PM, and this really helped me.

In addition, posts from the forums for those concerned about possible recurrence, those just diagnosed with a recurrence or metastasis, or the Stage IV forum triggered anxiety and fear, so I blocked those forums for a period of time, until I was stronger. I still only read these selectively.

If you think that it might help, then to block a forum, go to the menu at upper left, and select "All Topics". Navigate to a Forum, open it, and then block the forum by clicking on the "Block Forum" link as shown here:

>>>>

At the next view, confirm that you wish to block the forum by clicking on the red "Block Forum" button. (I think this will also remove these threads from your "Favorites".)

Re your question, while less likely, the possibility that even very small invasive tumors can sometimes spread is one thing that I did not understand at first. However, the TNM staging system accounts for this, because while not common, it is sometimes seen. Any T1-size invasive tumor that is also pN1mi is considered Stage IB, including the smallest T1mi tumors (per Row 4 in the chart and note at right):

T1mi Tumor ≤ 1 mm in greatest dimension

T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension

T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension

T1c Tumor > 10 mm but ≤ 20 mm in greatest dimension

Probably, not all cells that are able to leave the primary tumor site safely reach the nodes and establish themselves there. So, perhaps there may be some element of chance when it occurs early. And/or perhaps, there was a local immune reaction in the breast, that was able to hold the size of the primary tumor in check. The why in any particular case is unknown.

Per page 2, right column of this summary, pN1mi is the designation for micrometastases that are greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm:

https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

Treatment algorithms in guidelines also separate N1mi disease from N1 disease. This is because as grainne noted, N1mi disease has a more favorable prognostic profile than N1 disease. Indeed, with increased understanding of the prognostic significance of smaller nodal deposits, the AJCC staging manual was specifically revised to down-stage those with pT1 N1mi M0 disease to Stage IB, while N1 disease is designated as Stage II or higher:

"Whereas in the sixth edition, T1 N1mi M0 and T1 N1 M0 disease were both categorized as stage IIA, in the seventh [current] edition, T1N1miM0 disease was categorized as stage IB."

One of the hardest things for patients (as opposed to their family and friends) is to get to a point where you can believe more often than not, that you could be one of those in the larger group identified by statistics who will have a favorable outcome. Meanwhile, be kind and patient to yourself and protect yourself when you need it.

BarredOwl

grainne

bravemama34, how are you doing?

Barred owl's advice is spot on. Don't read the stage 4 boards. Don't read scary stuff at night. You have enough to cope with just getting yourself from one day to the next. i hear what you say about not being mentally as strong as you thought. I am exactly the same. I thought i was resilient, robust and tough and i would just get on with things. I am., i have found, needy, rather pathectic and, initially, pretty much terrified a lot of the time. I told very few people and only revealed my anxieties on this site, where you will get empathy instead of pity and the information you need to ask the right questions about your particular diagnosis.

everything has completely flipped over on its head for you and you husband over the last few months. Don't try and make sense of it because it just doesn't make sense. Get through a day at a time, going as easy on yourself physically and mentally as you can. Take all the help you can get.. you'll get a chance to pay it back some day. Keep smiling for yor little boy, lean on your husband and don't worry about anyone else. You will start to feel better physically and then you can join me fretting about multifocality or whatever else has kept us awake in the dark hours. Sooner or later we'll both get to a place of peace. Although I'm going through an anxious, negative patch at the moment, i really was fine for a few months . It hss been horribly stressful at work and i have been working long days and not able to get my usual brisk walk every day. I'm really missing it and i do recommend you get exercising as soon as you can. I am thinking of you and your husband.

Bravemama34

grainne and bared owl, I appreciate all your response. I'm doing ok. I have avoided looking at stage 4 and recurrence pages and it has helped.

I have spent some time on the pregnancy after breast cancer but I'm scared of that idea too. Rational side of me says one thing at a time, but we wanted a baby so bad and knowing there is no definitive data, will I ever be able to make that decision.

Grainne I hope work gets easier for you. I'm sorry you are again going through a rough patch.

Thanks for all the support. I'm truly grateful

grainne

Thank you. Just checking in to let you know I'm thinking about you

SpringerMom

I think my case may be somewhat similar to yours. On a routine mammo, it was found that I had one area of dcis, and I had a lumpectomy. When the pathology came back, there were 2 cells outside the duct, so that changed my dx to IDC. No lymph nodes were taken at the time of the lumpectomy due to the thinking that the cells were contained in the duct. That meant I had to have a second operation for a sentinel node biopsy. My surgeon assured me with only 2 cells outside the duct, that the lymph nodes would be clear, but theTumor Board reviewed my case and recommended a lymph node biopsy to 'be safe.' Those results came back with micro-mets of ten cells in the sentinel node, and none in the second node. This seemed strange to me. How could there be just two outside the duct, then ten in the node?? I was also Her2 positive. I had thirty seven radiation treatments and the oncologist felt I didn't need Herceptin because of the small size, regardless of the micro mets. I was concerned, but I went along with that plan.

I had three six month follow up mammos, and on the third one, the cancer was back, now in two places in the same breast. The original site, and about two inches away. I had bilateral mastectomies and reconstruction (x 6 so far). I should have had Herceptin!

Last night, I found a new pea sized lump just under my right implant. I will call Monday to get in with my doctor and see what he thinks.

I think the micro mets and being HER2 positive make me much more vigilant. It seems like a bad combination (not like there is any GOOD combination!).

I live every day to the fullest and my outlook on life has changed in a lot of ways. I have been living my bucket list for the past five years and have had some awesome adventures!!

You will get through this, one minute, hour, and day at a time. You get to the point where you go a day without thinking about cancer, then a week, and so on, but where you are now is totally 'normal.'

If my post seems a bit rambling, I have had 11 operations in the past five years and I have some residual cognitive deficits that they (doctors) speculate are anesthesia related.

Sending prayers and good thoughts to you!

Bravemama34

you are right. Our stories are very similar. I keep wondering how did these microinvasions already found their way into my lymph node. It scares me very much. I hear being pr neg is not good either. I'm just hoping the chemo and radiation will wipe them out.

Though I feel like overal I'm better, hurts when I think about my two year old growing without mommy. Just hurts.