Micro-invasive DCIS that is her2+++
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Thank you, Bessie, for your reply. Was just a little concerned. I know my sister, although her breast cancer was larger and different than mine, has already has 2 PETS, plus she gets blood work every 3 months.
They haven't suggested MRI, either. My l year mammo was good. I have an appt. with my onco in three weeks. I'll ask about the MRI, but you're right, he is the expert.
Thanks again!!
Karen
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Thanks for this information. I wish i knew my HER2 status but it wasn't done at the time of the biopsy and there were no more tumors found. Since I was BRCA i got the Bi Mx. I still need to talk to an Oncologist but appreciate this information. Also the biopsy said that my lesion was IDC with ILC? but sooo small, thank God.
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Hi MRDRN, I am sorry you are here, but well so am I...so Welcome. I am not always the sharpest tool in the shed, but I think if you were BRCA pos, there is no way of being her 2pos...can't be both...I am sure someone will jump in and either agree or not...maybe Beesie
Breath, Laura
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Hi everyone!
Haven't seen much going on here lately so I thought I would check in. Everything is going well for me. I'm just about to hit 6 months from my surgery. I was sitting here thinking that I can't believe it's September and fall is about to start and that this year has gone by so quickly. Then I'm surprised that I think that. My first (ever) mamo was in Jan when all this mess started so it seems like this whole year has been about cancer. But now that some time has passed, I must say that things are getting better. I feel more normal all the time, maybe more normal than I have in a long time.
I am now in the process of thinking about getting pregnant. That's what I was in the middle of when the dx hit. My mind is all over the place with that decision. I want to do it but that feeling of normalcy feels so good. I just turned 36 so I guess I better decide already
My new boobs are feeling more like me, but I'm pretty unhappy with one of them and I think I will have it redone. The pocket that was created with the TE's was really off-center on the left breast so that one is too far left. Cleavage not so good. Also one is bigger than the other. I'm told that's because there was more tissue left on one breast, because the implants are the same size. I hate the idea of another surgery, even though it was super easy, but I figure that if I've gone through all this I should be satisfied with them.
Guess I just felt like gabbing tonight. Please send an update and let us know how you are all doing. Hope all is well.
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Great to hear things are going well, Imnop! And very good to know that you're feeling normal enough to be thinking about a baby again : ) Hard to believe how quickly the time has passed since we first heard from you.... I'm coming up on one year soon and it all seems like some kind of bad dream. I can't really remember the pain from the bilateral anymore. It's the same way with having a baby, too! It all just fades.
I turned 41 this summer and my kids are now 11 and nearly 13. It's been a rough time with both of them becoming adolescents. My son (13) seems to be handling the transition pretty well so far, but my daughter (11) is suddenly very disrespecful and I am, unfortunately, quite sensitive if people are upset with me. I've even started reading parenting books! The most important thing I have learned so far is that children, above all, really need to have their feelings acknowledged, that's all. Just empathy! Not advice, pity, philosophy, psychology, or the other person's point of view. I've been going about it all wrong. Way too much advice! As they say, "Live and learn". I'll let you know if this actually works out in real-life experience, but I'll take any advice I can get!!!
As for BC, I had my first 6-month check with my onc at the end of June. She asked if I was exercising, asked about symptoms, checked me over, and said, "I'll see you in a year." That was great news, but I've had a couple of scares recently. I found a little lump next to my foob, about 5 inches down from my arm pit, near where the drainage tube scars are. I had an ultrasound and the report showed a .08 cm benign reactive lymph node. Whew! Also, I had some severe pain in my ovary and found out I had a 4 and a half cm cyst. It has shrunk to half the size in 2 months and "supposedly" will just go away. Nothing to worry about. Other than those heart-stoppers, life is back to normal for me. The sad thing is I feel as though I have lost that total gratitude for each and every moment that I held to so dearly for the first few months after diagnosis : ( I guess the good always comes with the bad.
I am also thinking about having a revision done. I went for a nipple tattooing consultation and got a 2nd opinion on my foobs at the same time. Mine are rather far apart, and although they look fine in a bra, it still bothers me. He basically wants to redo the whole job, replacing my moderate profile implants with high profile and sewing up the pockets on the sides. Since I already had my nipple surgery, this may off-set them, and then they will need to be "adjusted". I'm just not sure if I want to go through all this again. Maybe it's wise to leave well enough alone. I've seen pictures of some pocket-work and it doesn't always turn out so good - buckling and contorting the skin. hmmm.... So hard to know what to do. I am waiting to hear if insurance will cover it, which may give me my answer anyway!
That's my life in a nutshell. I'd love to hear how everyone else is doing, too
amy
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Hi, glad someone is back on this thread. I have a question. My Dr.s all assured me masectomy was not necessary at all with this small breast cancer. Can I ask you why those of you who had one, did? I have often felt I should have.
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Kawee
i just had my BMX. i decided on this for a few reasons and it really is a personal choice and your own comfort level with things. for me i have a strong family history, my grandmother died of BC and my mother is a 23 year survivor diagnosed when i was 7yrs old. she had a BMX so i think for me having grown up for a mom who had a BMX it wasnt as scary for me i knew what it looked like and i have watched a woman survive and live a full happy healthy life after. the other reasons is that i just turned 30 years old and i have a seven month old baby. my age was very concerning to the doctors, BC tends to be more aggressive the younger you are when it is dx and my chance of a recurrance of DCIS or another cancer was something i was just not comfortable with. i have too much to live for to worry that i can get another invasive cancer or another DCIS i felt like i would always be worring, bc im a worrier that is how i am with everything so that is why i think people have diffiernt opinions.. my DCIS was grade 3 and that worried me....i actually just got my pathology back and i had multi-focil invasion and a 2mm invasive ductal carcinoma dx after my mastectomy for DCIS. so i am not regreting my decision. i dont wnat to wonder and take any chances i look at my little boy and just felt this is what i have to do.
that of course does not mean that is what you have to do. it is a personal and individual decision. take your time with it, talk to people who have had it done and talk to those who choose not to, talk to your family and include your husband if you are married, my husbands support of my decision and our long talks about it made me know it was right for me. its a big decision, do i miss my real breasts, yes of course, but do i regret having taken this drastic measure? ...for me no i dont! feel free to PM me if you have any other questions about surgery or reconstruction take care !
jennifer
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To be honest Kawee, I do not miss my breasts...I felt and still do, that double mast was the thing to do..I have never regreted my desicion. My mom had it twice...she is fine ...my Dad had brain...he is fine....I was more into living than not. Maybe it is true that it does not make a diff...but I wanted them OFF! They were not exactly on my side. After learninig of the micro invasion and Her 2 pos...Good riddance, Follow your gut..only you know the answer:)
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kawee, I only had a 1mm microinvasion but I had over 7cm of DCIS spread throughout my breast. And I was a small "B". So I had no choice but to have a mastectomy.
After a negative biopsy for calcs in my other breast, and a clear MRI, I decided to have a single mastectomy only. I am very glad that I made that decision. Having a natural breast, even one with scars from previous excisional biopsies and even with having to go for tests every 6 months (an MRI or a mammo), is much easier for me to live with than having a mastectomy with reconstruction. Having lived with my mastectomy for almost 5 years now, while I am fine with it and mostly it doesn't bother me, the fact is that I still get muscle aches, I still get phantom itching and I still notice my "breast" whenever I lift something heavy. A mastectomy changes your body for the rest of your life and you deal with the effects of it for the rest of your life. For some, that's easy. For others, not so much. If I was in the same situation again and this time I had the choice between lumpectomy + radiation or mastectomy, I'd pick lumpectomy + radiation any day.
As Laura said, what's most important is that you follow your gut. Make the decision that's right for you. If you never felt the need to have a mastectomy and if overall you are satisfied with your decision to have a lumpectomy, don't waste a second re-thinking it. On the other hand, if you are having a hard time living with your lumpectomy and always worry about risk (real or imagined), then maybe you should consider a mastectomy. But if you do, understand the implications and how they will affect you. Don't let other women's decisions influence yours, either way. And remember that the survival rate is exactly the same, whichever option you choose (for those who are lucky enough to have a choice).
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Thank you everyone for your replies. Here's the deal with me. I was taking hrt at the time I was diagnosed. Of course, they took me off immediately. I have lupus and the hrt gave me so much more energy, that's why I was put on it originally. Since being off of hrt, my lupus symptoms and fatigue have returned significantly, I'm somewhat depressed, anxious, and from the horrible hot flashes I have, my face is covered with rosacea acne. In other words, I'm a mess. I need to go back on hrt (estrogen only) or keep feeling absolutely miserable. I'm going to talk to the oncologist (I'm not taking tamox) about getting back on estrogen.
I just don't know what to do, I know he will be against it, but quality of life is everything. I have researched studies on hrt after bc and recurrence. There have only been small studies but only one found an elevated recurrence of about 14%. The other studies found none.
So, my options: Be tired and achy all the time, along with all the other uncomfortable symptoms, take the hrt and take my chances, or do the mastectomy and take hrt without the anxiety of getting bc again. I'm in a quandry.
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Hi Alll,
I didn't know that about being BRCA and HER2...but will try and research.
Amy my understanding is that insurance has to cover recon to your satisfaction ....I saw a reference to this on the NOLA site if i remember
I heard a reference from Dr Oz this week on his show that in all women studied in an autopsy group from 40-50, they found a micro invasion of BC in 40 percent of the people studied (not sure the number of people). I was shocked and he had a Guest MD speaking to effects of diet to decrease the advance of these BC's.
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Hi Amy,
Thank you for writing about your family - I enjoyed reading your post. My older daughter will soon turn 10 and has always been difficult. Many times I regretted what happened between us and how i reacted to her frustrations. I can only imagine what will come in the following years - only this time I will be gratefull just to still be around
(btw, you were probably reading the A. Faber and E. Mazlish's parenting books - I am just reading their "Sibling without rivalry" - their method is based on acknowledging kids' emotions and I believe it works 100%.)
Sorry to hear about your recent scares. And regarding the revision you are considering - you say your foobs look good in a bra. Now, what does your husband say about how they look without it? In my opinion, men can not care less.
My husband currently has a bad case of Mamil syndrome - Middle Aged Men In Lycra - it started a few years ago. He spends tens of hours on the bike weekly; biking is his new mantra. I am not sure he even notices one foob is not there now ...Good luck deciding,
peaceJenna
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Dear MRDRN, Thanks for the insurance info. I think you're right about revisions, only some insurance companies can make it "difficult" in order to get you to give up! My Dr. said it can take a while before it goes through because they sometimes need to fight it out with the insurance. I looked for info on the relationship between BRCA and Her2neu, and it looks as though Laura was right. If I'm reading this chart correctly, it is uncommon to be positive for both. http://jco.ascopubs.org/content/26/26/4282.full.pdf
Dear Jenna, Yes! I am finding these authors very helpful. I wish I had read their books long ago. I also read the book on Sibling Rivalry, along with several others... I even had to pay a steep late fee at the library because I checked out so many and failed to get them returned on time. Can you say desperate?! Right now, I'm reading "Respectful Parents, Respectful Kids". I'll keep you posted. I hadn't heard of this MAMIL syndrome. Ha! I bet he has some mighty fine "features" with all that biking : ) My husband can be hard to read, sometimes. I think you're right, though, and it probably doesn't matter to him one way or the other. It's me who has the problem looking in the mirror. I'm comfortable with not knowing what to do yet, though. I know my decision will eventually come.
Your decision will come, too, Kawee. Try not to force it. Take time and let yourself "not know" for a while. Gather your information, listen to the stories of others, use this wonderful sounding board. You will come to your decision soon enough. Feel good knowing that you have really thought it through. That will help you to feel confident with your choice : )
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Dear friends,
I need your help. I am in a really difficult situation. Unfortunately I do not live in the States but in a very far country of Europe. I need to decide on my future treatment by myself and I urgently need help. Please see my diagnosis below and tell me do you know of anyone who has a similar type of cancer, actually I had three in one breast.
1. Extensive Indraductal Component (EIC) seu DCIS G III ( "commedo" subtype + "clinging" - subtype >30 ductus) in stadio pTis No Mx secundum AJCC/TNM. Metaplasia apocrinica cystica micropapillaris
2. Morbus Paget cum DCIS G III (commedo" sybtype "cllinging - subtype).
3. Sinus histiocystosis lymphonodi (0+/1).
4. Textus fibroadiposus sine morbo.
5. DCIS G III (commedo subtype) multifocalis. Microcystes. Ductectasiae. Metaplasia aprocrinica cystica micropapillaris.Microscopic findings:
1. Imunofenotype of lezia, i.e.
E-cadherin (+), CK HMW (+++), Her2 (neu) (+++), p53 (++), p63 (+/-), bcl2 (-), CD10 (+), Er (-), Pr (-)2. Imunofenotype of lezia, i.e.
EMA (+), CK7 (+), CK 8 (+), Her 2 (neu) (+++), Er (-), Pr (-), Androgen (-), pCEA (+), s-100 (-)One group of doctors believe I should undergo a high dosage of chemo (6 cycles) followed by a radiation and then a year of biological treatment with Trastuzumab. Other group of doctors believe that a mastectomy was a mistake at the first place, but since I did it I do not need any additional treatment and that now I am cancer-free. These are the opinions of two different hospitals. To say that I am confused is not enough to express what I feel right now. By one hospital I am a high risk patient that should start with chemo right away and by the other hospital I am now totally cured. Whom to believe? What do you suggest? Any kind of advice will do.
Thank you so very much and sorry for bothering you,
Pecamkabo (40 years old)Diagnosis: 3/20/2011, Paget's, 2cm, Stage IIIa, Grade 3,EIC, DCSI G III, commedo 0/13 nodes, ER-/PR-, HER2+
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Went to my oncologist today. I had DCIS with micro invasion. I had an aggressive gene called HER2 and it said it was a 3. He gave me threee choices. My first choice is to do the Bilateral Masectomy of both breasts and since the testing of my lymph nodes were neg (did this a week ago) My second choice is to do a IV regimen of Herceptin once every three weeks for a year. It really doesnt have side effects. My third choice is to do a regimen of Herceptin and Chemo by IV for 3-6 months with chemo side effects like nausa and hair loss. I dont want to lose my hair but since that HER gene was such an aggressive one and a high number that is the one he would be worried about and since I am so abnormal to have some microinvasion there is a very small chance that it could have gotten into the blood system. Right now everything was so small that I could probably walk away and it not come back, like 95% that it would not. He just wants me to make the decision.
Pretty upsetting and not what I wanted to hear but I dont want this shit to have gotten out or have that chance because i am so "special" I dont want it to lay some where else and grow into something else in my lungs or liver and it would kill me fast as aggressive as it was. The oncology place is 2 hours away and will have to make that many trips and it takes 2-3 hours at a time. The weather sucks in the winter so bad and with school and kids. It is just going to suckDid any one here do nothing in the case of this DX?? What if any side effects did you have from the herceptin trtments? Did anyone do the Herceptin/Chemo combo??
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alliesmom15,
I had DCIS with a microinvasation of less then 1mm, her2 +++. er-, pr-, node negative.
1st thing to remember, life never holds any guarantees, whether you've had cancer or not. You can get hit by a car, lightening or suddently suffer a fatal heartattack with out warning (this happened to a close friend). Just some examples of life's uncertainty. You have to live each & everyday to the fullest.
I consulted with over 10 oncologists & they all felt the risks of chemo & herception outweighed the benenfits with such a small microinvasion. I was only 38years old when I was diagnosed. I had 3 young children ranging from 8months, 5 years, & a 10 year old & needing radiation every day for 7 weeks made things tough to say the least.
My suggestion, consult with a minimum of 3 oncologists & follow what the majority recommend, along with what your heart says. It may be time consuming to get all these consultations but remember your are dealing with cancer & you need to get as much insight as you possibly can to help you make your decision & make a decision you can live with, without looking back.
Wishing you the very best in your journey
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Thank you Lizzy. He said my Micro invasion was so small they couldnt even measure it and it was a stage 0. Did you do Chemo and Herceptin or just the Herceptin treatments? I think my Oncologist was leaning towards the Herceptin treatments for a year and mentioned the chemo and Herc trtmnts might be overkill. He really wants me to make the decision though because you are right there are no gaurantees for anything.
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I also was diagnosed with DCIS microinvasion of less than 1mm. I went to Duke University and was told by the oncologists there that chemo/herceptin would "poison" me for a slight if any benefit. They told me that they were not comfortable with any further treatment. I did have a lumpectomy twice with unclear margins so I decided to have the bilateral mastectomy even though the cancer was only in one breast. My own oncologist is the one that sent me to Duke for another opinion because we are in a small category. I had stage 1, grade 3, HER2+ cancer as well. My oncologist is now agreeing with Duke University but he has ordered a CT of my brain, a PET body scan, and is having all my pathology slides retested at Duke University. If everything comes back clean, then I think we are going to stop. I know a lot of people have been given Herceptin with no side effects but my doctor said recently he had more than one patient have a bad reaction to it and one of those women is now on oxygen for the rest of her life due to the heart damage she received because of the drug. I know that is very rare but it can happen. You can also get chemo induced leukemia (again this is VERY RARE) but Duke University did stress these things to me when they told me they felt my microinvasion was so small that it should be treated more like DCIS which does not require chemo or herceptin. I also recommend getting an opinion from several oncologists. My own oncologist recommended that. I do not want to discourage you from any type of treatment. You definitely need to research these things all you can. I am still unsure of how I feel about the whole thing but I would love to know what others are doing.
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do not really post anymore but this one caught my eye... I too had dcis/microinvasive, her2 pos breast cancer only in one breast..actually on path said less than 10 cells invasive. Very small. I also serched out 3 opinions from oncs and all agreed that treatment of any kind was overkill. I did have double mastectomy with clean nodes. I do not regret it for a minute, but I have to say that falling in such a diagnosis crack so to speak occupies more of my brain space that I would like. I was 46 at the time of diagnosis and coming up on 1yr and half out. Sometimes I actually forget, and then in the middle of the night...well you know. Keep on moving forward, make the decision that is right for you and keep the faith. xo
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Hi Allie's mom. I too had DCIS with 1mm microinvasion. It was in my right breast and my nodes were clean. I had a bilateral mastectomy with no further treatment. I went for 3 opinions and consulted with John Hopkins. Several studies have shown that microinvasive DCIS has the same prognosis as DCIS. I would definitely get a couple more opinions before making a decision, but in the mean time, try to take comfort in knowing that you have a good prognosis
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Alliesmom,
since I had a lumpectomy, I only had 7 weeks of radiation. No Tomox, since I'm ER- but I see a naturalpath that specializes in women's health & she did an extensive blood work up on me & prescribed several supplements that I am taking to strengthen my immune systym & hopefully reduce the chances of recurrence.
At the time of my diagnosis, all my doctors said there weren't any studies showing that herception is effective by itself. I don't know if there are any new studies showing herception being effective without chemo, perhaps that's a question your oncologist can answer...
Wishing you the best.
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I have been hearing so many different opinions, I like yours the best LOL I just dont want to continue any other treatments. Are you comfortable with your decision? May I ask what sort of supplements are you taking? Thank you
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Alliesmom-
If you have any reservations, please seek out additional opinions. If you do seek out additional opinions, be sure it's with oncologists that have experience in treating her2+++ breast cancers.
I'm 3 1/2 yrs out from diagnosis & a little over 3 yrs out from radiation. Initially because of mixed feedback on the forum, I was a little unsettled about my treatment being only radiation (I had a lumpectomy & you always must get radiation with that), that's why I sought out so many opinions. Now I am totally fine with my decision. Our diagnosis is VERY rare, being caught so early. We are almost a stage 0, as Dr. Eric Winer, from Dana Farber in Boston said after reviewing my pathology report, with such a tiny microinvasion, I would have the same prognosis as DCIS which is stage 0.
I will forward you my list of supplements & the dosages I take. I know the supplements I take but can't recall the dosages off the top of my head.
What's most important is that you make a decision that you will be able to live with.
Absolutely no need to thank me, I am only sharing my personal experiences...that's all.
Talk to you soon,
Liz
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I am going to see a couple of different oncologists. I talked to my surgeon today and he said he is going to be on a discussion board with an oncologist, pathologist, radiologist and himself to discuss my case and will let me know what they say. It will be next week and he told me to get as many opinions as I feel i need.
I just want to do the right thing and am having a stessful day thinking about it.
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Good Morning Everyone
So glad to hear you are getting more opinions, Jen. I think that's the key to feeling comfortable with your decision. Also, you have all of us here who can help with the experience we have gained having been through it : ) With 4.5 cm of grade 3 DCIS and a family history of bc, I decided quickly to have a bilateral mastectomy. A few days after surgery, the pathology report came back showing the 1 mm microinvasion, Her2+++. The first time I looked up Her 2+++, I almost fainted! I started posting on the board to find out what people were doing for treatment, and almost all were getting chemo and herceptin and advising me to do so. Fortunately, Liz saw one of my posts, and had done a lot of research on microinvasive DCIS that is Her2+++.
The most experienced Dr's in the breast cancer world are treating our diagnosis the same as DCIS. There are several large pathology studies which indicate that the prognosis is the same. My oncologist is Kathy Miller, who is on the board of directors for bc.org. I also consulted with Ben Ho Park at John Hopkins and I feel like I got the best opinions from these ground-breaking Dr's. I did go to two other oncologists for an opinion. One said tamoxifen and the other said she would worry about me if I didn't do chemo and herceptin. I really felt that these Dr's were not familiar with the latest studies and our unique diagnosis. My ER and PR were very low, and tamoxifen would only be beneficial if I had opted for a unilateral mastectomy - in order to reduce risk of contralateral malignancy.
After combining all the opinions, the very best Dr's all around agree that patients with a focal microinvasion of 1 mm or less have a prognosis identical to those patients with pure DCIS. This would entail an extremely low risk of distant disease, and they do not believe would justify the use of cytotoxic chemotherapy or anti-Her-2 targeted agents. The likelihood of significant toxicity from any attempts at systemic therapy would outweigh any potential benefit.
The right decision, however, is the one that's right for you. It's all about what you feel comfortable with. If chemo or herceptin would help you feel safer, then that's what you should do. I know it's hard to do, but as I said before, try to take comfort in knowing you really do have a very good prognosis. We are a lucky bunch
~amy
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Amy-thanks for all the information you posted. I have read alot about HER2+ and it can be scary. I have also consulted several oncologists and they all seem to agree that DCIS with small microinvasion is the same as pure DCIS.
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Does anyone know what Ki-67 is??
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alliesmom-
if I recall correctly? It's a test they would do on your only on your "invasive" compnent to help determine your rate or chances of recurrence. I believe that was the test I was NOT able to have done since my invasive component was so tiny.
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Thank you Lizzy, would you mind saying what yours was? Mine says it is intermediate in both invasive and in-situ components and it was 12% If you dont want to say that is ok, just curious to see if that is bad or good.
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I was reading my path report and it said that the microinvasion stage would be pTmic pNO pMX
Does anyone know what that means?? I am going to see my second opinion oncologist on the 30th so I can have it explained then but just wondering.
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