Just diagnosed yesterday

mazy123 · April 2015

Hi Everyone, I am so glad that I found this forum. Sorry that any one of us has to be a part of it, but reading your posts has really helped me in the last day.

I am 44 years old and diagnosed yesterday with Invasive Lobular Carcinoma in the right breast. Deep subareolar invasive lobular carcinoma (nuclear grade2) measuring .9cm in maximal length. Extensive lobular carcinoma in situ is also present. Scattered dystrophic calcifications associated with LCIS and columnar cell change.

Just met with breast surgeon oncologist. Sounds like she could try lumpectomy, but might be disfiguring. So, I am maybe leaning towards mastectomy on right side. That leaves the left breast to decide on. It feels funny to remove the left breast, but I wonder what that will feel like to always wonder if cancer will appear on that side.

I had two biopsies done on left side that turned out to be fibroadenomas.

She has sent me to meet with oncologist, radiologist, plastic surgeon, and geneticist in the next couple of weeks. I don't have a family history of breast cancer except for my second cousin on my father's side. She was diagnosed five years ago at my same age.

I also assumed I would have an MRI done, but doctor didn't seem to act like that was a necessity.

I would love to hear your thoughts and opinions on the decision to do one or both sides with mastectomy and whether or not you had an MRI before your surgery.

Thanks so much for your help!

I tried to include everything on the report:

Histologic grade (Nottingham) Grade II

Gland/tubule formation Score 3/3

Nuclear Pleomorphism score 2/3

Mitotic rate score 1/3

Lymphovascular invasion: absent

ER Positive 76%

PR Positive >90% strong intensity nuclear staining

HER-2 neu score: Negative

Proliferation index (Ki-67) 14% nuclear staining

fizzdon52 · April 2015

Hi Mazy123 I am really sorry that you find yourself here, but you will find a lot of comfort from the lovely people on here. I would recommend you get an MRI if possibe. Lobular is normally very hard to find on Mammogram and Ultrasound - it was in my case anyway. It was picked up by MRI and that also told my doctors that I didn't have any cancer in my left breast, I found having an MRI very reassuring. I opted for a lumpectomy, apparently I was borderline as my tumour was quite large, but because I have big boobs 36DD, a lumpectomy was possible and they got clear margins. So now I have one slightly smaller boob but it's not that noticeable. My tumour was in the 10 o'clock position, so I have two scars, the lumpectomy scar on the side of my boob and the scar where they took out 11 lymph nodes is under my arm. Sometimes I wonder if I should have had a mastectomy, or even a double mastectomy, for peace of mind sake, but I find the medical profession are keeping a really close eye on me and that is reassuring. Hopefully some other ladies will come in here and tell you their stories. Good luck.

mazy123 · April 2015

Thanks so much Fizzdon52,

I really appreciate you reaching out to me and sharing your story.

I have small breasts 36A which might be why she thinks it might not leave me with much.

Glad to hear that you are doing well and that the doctors are keeping a close eye on you.

Thanks for sharing.

wallycat · April 2015

I am so sorry you are joining us here, but glad you will find useful info.

No one can decide for you because no one knows you better than you do yourself.

I opted for bilateral mastectomy for peace of mind and I did not want the constant monitoring and watchful waiting. When it comes to health matters, I am a nervous nellie and tests, doctors, exams are a nemesis in my life. Add to it I had D cups and going lopsided was not something I wanted to deal with. It would have meant wearing a bra and forms/prosthetics. For me, the silver lining was getting rid of bras for ever (OH the money I have saved in that alone!). Some women want to maintain sensation/sexual pleasure with at least one breast, so that is one thing I do miss deeply, but easily offset by not much further testing.

I told my doc I wanted to look like a 10 year old boy, and I do!

I rarely regret my decision. I am sometimes wistful when I see movies with women showing off a nice cleavage, but that is also rare.

If you are married, you may want to discuss this with your husband and see if he has thoughts and opinions. My hubby is not a boob-guy and he was supportive of my decision.

Best to you!

dolfin · April 2015

hi Mazy123

How was your diagnosis made? Did you have a stereotactic biopsy and mammogram that revealed a suspicious area? Did you have any noticeable symptoms that lead to the biopsy? I just learned my calcifications and biopsy tissue are benign but I'm getting concerned that maybe they missed the area. I had no palpable mass but the area in question was similar to yours. I am going to talk to my doctor tomorrow about doing a breast MRI

I'm waiting on the final radiology report which is supposed to be done after the radiologist who did the biopsy reviews the path report and determines if the findings are concordant or discordant with the mammogram.

I have dilated ducts, fibrocystic tissue, complex and simple cysts to add to the microcals seen. The microcals were interpreted as dystrophic like yours. The biopsy was to rule out dcis or lcis because of the microcal pattern

Not feeling very reassured here

I wish you all the best

LK121212 · April 2015

Hi Mazy,I also am very sorry that you had to join this group due to a change in your health. I hope that all goes smooth for you. I was Dx on 10/29 by my Radiologist. He took it upon himself to tell me I had Cancer before the Bx was ever done. I know he has 25 yrs experience but I was really shocked. I had the MRI done bilaterally and nothing showed on my left but I am glad that I decided to do both, because after they removed the left they saw pre cancer cells that could not have been seen with MRI. Also I believe you will be doing plenty of research in the next weeks.If I can give any advise it would be to deman a nipple sparing and skin sparring. And if one Doctor won't do it, then look for one the will. It was the best step I took for myself and I am so glad I did. After all the surgery and Chemo is done all that you are left with is the scars. Emotional, Physical and Psychological and you don't have much control when it comes to the Chemo and all the side affects from it if it comes to that but you do have control over what your body will look like when all is done and finished. The Journey is your own but the support is here and we will all be here through good times and bad times. We are all in this walk and this is a puzzle piece in our lives that will fit perfectly as intended

L.K

mazy123 · May 2015

Hi Everyone,

Thanks for your responses. It really means a lot to hear from you all and get your thoughts.

Wallycat, so happy that you are so happy with your decision and outcome. That is encouraging.

Dolfin, I went in for my first mammogram ever on March 10th. They kept taking more pictures and then took me back for ultrasound. They found two spots on left breast that were biopsied last Monday. They turned out to be fibroadenomas. They also found hazy spot on mammogram on the right side. Initally they thought that could be attributed to a 1995 surgery I had to remove a fibroadenoma. All my paperwork from 1995 says that it was on the right side. Problem is that my scar is on the left side. They think the paperwork was messed up. Anyway, since they couldn't determine that that was where my prior surgery was, they decided to do a biopsy with a mammogram. That was last Thursday. Yesterday morning the surgeon oncologist called to tell me the diagnosis.

I hope that everything works out for you and that you get good news. I will be thinking of you. Let me know if there are any other questions I can answer. I had no lumps on that right side. My obgyn had felt the lumps on the left side that I hadn't really noticed.

LK121212 Thanks for your words of encouragement. I really appreciate you telling me about the nipple and skin sparing mastectomies. I hadn't heard of that before and now am researching. Who makes a good candidate for that?

Thanks,

Mazy

Moderators · May 2015

Hi Mazy-

We want to welcome you to our community here at BCO. We're so sorry for the circumstances that brought you here, but we're so glad you've joined us, and hope you find the support you need!

You've gotten some great responses already from some other members, but we also wanted to direct you to our Just Diagnosed forum, where we've compiled a list of links that many of our newly diagnosed members find useful: https://community.breastcancer.org/forum/5/topic/8....

Please don't hesitate to reach out to us via the private message function if you have any questions at all. That's what we're here for!

The Mods

Momine · May 2015

Mazy, welcome! it sounds like you caught this early, which is slightly unusual with ILC, because it is so hard to image. That is a very good thing. However, with ILC, I think I would insist on an MRI prior to surgery.

Anonymous · May 2015

I don't know what to add except welcome to the club no one wants to join... You might look into a bmx, because ILC has a bit of a tendency to be multi-focal, higher than IDC, and hard to catch on scans. My MO supported me in my BMX for that very reason.

Sounds like you have a great chance of recovering completely since you got this early. Many of us weren't so lucky.

Claire in AZ

Trvler · May 2015

It sounds like you made a similar decision to me for the some of the same reasons I did. My own breasts are small. I have 30 year old implants. I want them out and I don't want new ones. I figured a lx would disfigure me considerably. My first highly recommended BS recommended a lx and rads. They thought the tumor was 2.5. The second BS wanted more imaging and they found more cancer in the same breast, confirming me decision to get a mx. Also found at least one positive node. Since I have a bit of a tummy no matter what I do, I decided to go with a DIEP. I was talking to local PS's and none of them gave me a comfort level, nor did I find a local BS I felt strongly about. So I got the bug up my butt to meet with the NOLA guys because felt like not only were they the pioneers of the flap, but I loved the BS and If let like he was the first one who even considered or discussed my ILC at any length. I opted for bilateral for symmetry.

kar123 · May 2015

My decision was very close to Wallycat's. I had a very large mass that did not show on an MRI, so I opted not to have another before surgery. For that reason I also had a double mastectomy. I lost faith in imaging and didn't want to worry. I also wanted a more symmetrical outcome. I do miss the sensation that I took for granted of my real breasts. Depending on where your tumor is located, nipple sparing may not be an option. Good luck with your decision.

LRGinger · May 2015

I'm sorry about your diagnosis. I was diagnosed in February, and it's a whirlwind of information and decisions.

I too would demand an MRI. My MRI found additional ILC tumors, and that took lumpectomy off the table as an option. Best of luck making these tough decisions.

mazy123 · May 2015

Thanks everyone for all the information and encouragement. It really means a lot. Meeting with the oncologist and radiologist on

Tuesday and then the plastic surgeon on the 11th. Hoping to get in before that. The waiting is really hard, isn't it?

One thing I haven't found much information on is how long does it take to recover from a double mastectomy? What is that like? How do you feel one week out? A month later? I would appreciate your thoughts on that.

If I decide to have a double mastectomy, is the MRI still important? Just trying to understand the role the MRI plays in all this.

Thanks,

Mazy

LRGinger · May 2015

I am almost 6 weeks out from the double mastectomy with tissue expander placement for reconstruction. The first week was tough - painful and limitations on what you can do. I found it got better each week and significant improvement came at 2 and 4 weeks. At almost 6 weeks I have pain, but it's all from the tissues expanders. My ILC was only on the right side, but I elected to do the BMX even though there was not really any clinical benefit to removing the left breast.

The waiting is the absolute worst. I got some good advice to use the time to make my lists of questions for the physicians. Good luck this week!

mazy123 · May 2015

Hi LRGinger,

I am glad that you are six weeks out and seem to be doing well. Sorry that you have the pain from the tissue expanders.

Waiting is terrible. I am so anxious to hear what the oncologist has to say. I have a long list of questions!

Thanks so much,

Mazy

Anonymous · May 2015

Hi Mazy, I stayed small (36A-B minus, ha ha). So I didn't have expanders, or all that. I went in on July 3, was out by July 5, and had full range of movement shortly after. I had new boobs and very small incisions, and no pain to speak of, really. I was asked not to do any exercise that pressed on my new foobs (silicone) for about 3 weeks so no prone position yoga moves, etc. or swimming. I had nipple-sparing and my PS did a biopsy of nipple tissue each side to make sure there was no involvement. I had no danger signs on the bad boob when I got back the pathology from the surgery, but I did have mild displasia in the left (supposedly unaffected) boob that never showed on any scan: mri or otherwise. So I was glad I went BMX. My MO told me that the mammo shows about 80% of tumors, the US catches others, and the MRI is simply another tool to try to find what the others don't. But nothing is a 100% sure scan, I feel.

Hope that helps. I am glad I removed more possibility of problems in my future; I had clear mammos for years and look where I am now. So I didn't want to take any more risk than I already have. I do miss not having sensation in my breasts and still have dreams that I do.

Claire in AZ

Trvler · May 2015

I think skin and nipple sparing can be up to the expertise of the surgeon to some extent. I would suggest asking the surgeon's opinion. If it is not in their area of expertise, sometimes they just dismiss it as an option, which is what happened with me.

I should add that since I am having neoadjuvant chemo, I haven't had my surgery yet. But I know my BS is an expert in the area of skin and nipple sparing so if it can be done, I think he will do it. When I mentioned it to another doctor I consulted with, he was discouraging. But again, he didn't recommend neoadjuvant chemo either.

sgreenarch · May 2015

HI, Mazy: I would just suggest an MRI even if you have a mastectomy. It might help inform your decision. I was all set to have a lumpectomy and then an MRI found a second smaller tumor, same breast, remote from the first. Lumpectomy would have left me with a swiss cheese breast so I had a unimx. I'm not sorry I held onto one breast. Though I don't like the surveillance. Another thing to ask for is probably an oncotype as it helps you decide about chemo. In the end I still havent done reconstruction and I'm ok with that. WIth God's help I'll be hitting the five year mark this summer. Telling you this so that you know that though things are rough now, and we all remember how rough, you will get through this.

mazy123 · May 2015

Hi Claire, Thanks for the information. Glad to hear your surgery went well. I appreciate hearing about the recovery process. It is really disturbing to me to find out how much is missed by a mammogram. I guess I always thought that they would catch anything. I just turned 44 and had put off having one for almost four years. That was my New Year's resolution to go to the obgyn and get my mammogram done. Glad I did and feeling lucky it showed up on mammogram and ultrasound. I have wondered what that will be like to not have sensation in my breasts. Nice to think that it might come back in my dreams.

Travlr, Thanks for the information about nipple and skin sparing surgery. I hope that you are getting through chemo okay. I am hoping to get into the plastic surgeon this week. On his website it looks like he does this surgery regularly. Still don't know if I will be a good candidate or not.

SGreenarch, Thanks for the MRI recommendation. Glad that the MRI gave you the information you needed to know. Good to know your peaceful perspective on keeping your one breast. There sure is a lot to think about, isn't there?

Thanks,

Mazy

Anonymous · May 2015

One last thing: my PS said that additional fat grafting (I've had it once already, to build up the radiated side and create more symmetry) often brings back some breast sensation (his wife is proof). It uses your stem cells which can often regenerate some feeling, but I don't know more than that. Fat grafting wasn't difficult although you do have to have it done in outpatient surgery. And insurance pays for it. I had it done last May, and am taking a year off from having to have surgery, but I may have it done next year again. Recovery time was minimal.

Essentially it's simply pulling fat (lipo) from one place in your body and injecting it in places in your breasts. Don't get excited, they don't take enough to make a difference in your waist or hips (darn).

Claire

Trvler · May 2015

Mazy: I am glad you got your mammogram and they found it now. I never really even thought mammograms were necessary because I have breast implants and my own tissue is very small. Joke was on me, I guess. Just ask the PS a lot of questions like how many of these surgeries he/she has done. What is their conversion rate from DIEP to FLAP. What is their failure rate? Do they do a pre-op scan? Don't assume just because they do the surgery, they are good at it. I hate to say that. I don't want to scare you or anything. You just have to do a little digging. Sometimes it is hard to even get the answers. I called one PS and they wouldn't tell me the answers. But a physicians assistant called me back and we had a 20 minute conversation. She told me their conversion rate was very high and I wasn't comfortable with that. Some people might be. There is some debate on the board as to whether or not conversion from DIEP to FLAP is a concern.

mazy123 · May 2015

Hi Trvler,

I am so glad about getting the 3d mammogram too. Thanks for the good questions for plastic surgeon. I have my surgery scheduled for May 21st. Double mastectomy with tissue expanders. Have given it a lot of thought the past week and think that is the right choice for me.

I hope that you are doing okay.

Thanks,

Mazy

SissyAudrey · May 2015

So sorry that you are a member of this club that nobody ever applies for membership! But, I just want to tell you that I am a 5 year survivor since metastasis to my liver and I am as fat and happy as a girl can be, so just keep your eyes forward! I had a mastectomy and chemo (no need for radiation as it was not in chest wall). I started out Stage II and at first scan after MX and chemo found tumor in liver that turned out to be 2 tumors. ILC is very sneaky, so I personally would insist on the MRI so that you are attacking from every angle necessary. When I found my amazing surgeon who insisted that removal of the tumor in liver was possible (many other doctors disagreed), but I was of the mindset to get the dang thing outta me. He truly saved my life as he found the 2nd tumor by feeling my liver. No PET or other scan saw that tumor. Any info you can get before you get your gameplan made will help you make good choices. This is war and there are new weapons in our arsenal that make us a formidable foe! You are in my thoughts and prayers. Keep us posted of your warplan and achievements as you can. You have us all cheering you on!

mazy123 · May 2015

Hi SissyAudrey,

Thanks so much for your kind words of encouragement! I really appreciate it. I am happy to know that you are doing so well!

I met with plastic surgeon for the last time today before my surgery next Thursday. I am having BMX with tissue expanders.

No doctor that I have met with thinks that MRI is necessary since I am having mastectomy, but I totally see why it is a good idea and can pick up things that will be missed by just doing pathology on breast tissue and nodes.

I am feeling a bit anxious, but I feel in good hands with my doctors and with the support of people like you on this forum.

Thanks again,

Mazy

December · May 2015

Mazy, So sorry you are having to go through this - but you have found a real home here. Welcome and feel safe. I know your post is a few days old, But I am exactly one week out from my BMx - nipple/sparring with TEs - spent @ 8 hours in surgery including recovery time, stayed over night. First couple of days were okay because I guess it took a while to get the moraphine out of my system. The surgery was both worse and easier than I expected. I'm 55 and live alone. So I was quite prepared to manage by myself after the surgery (plenty of prepared food, etc). I didn't have like horrible pounding pain (low dose Hydro) but more like extreme weakness, and my chest felt like I had on a uner wire bra that was way to small and cutting into my ribs. And it never, ever goes away. It subsides for a bit when the pain pill kicks in - but then it's back. I also had EXTREME itching - that went away about day 4, thank goodness, because day 4 has been the hardest so far. I was up walking around, eating and drinking and taking care of myself just fine. I did notice that it took me about 3 days before I quit sounding like a drunk (forgetting my words, forgetting where I'd put something). I found it (and still find it) an aggervation writing down the date, time, of every pill I take and recording the amounts when I empty my drains.

With my dx in Feb, I was in shock - mammograms every year, regular self exams - nothing every showed up. I found my tumor myself and had to "show" it to my doctor. Went through all kinds of testing - ILC ...I didn't think twice about having the BMx....I had read on this site where so many women started with lx and Mx and eventually endded up with the second Mx - ILC is like that. I just wanted to reduce the odds of me having more and more tests and surgerys.

As for the recon -(TE) I''m not sure if I would do that over - it hurts & guessing it will be weeks before the end of the tunnel - recovery is much easier and quicker without recon, I understand. But if I hadn't done the recon - I might have regreted that too (however that can be done later) What surprised me most, is how depressed, angry I was about day 5 - It was like the weeks before were just a bad dream - but on day 5 I woke up and it hit hard that, NO, this is the new me. This is my new reality. And this sucks but it is what it is. I've been going through all the 5 stages of grieving...I still haven't gotten to acceptance quite yet. So I guess I'm saying that while I was overly prepared for the physical - I was way under prepared for the mental and spiritual.

Prayers, Blessings, Hugs, & Laughter!

Jerilyn in TN

Vol4Life (Go Vols!)

mazy123 · May 2015

Hi Jerilyn (Vol4Life), Thanks so much for sharing your first week recovery experience. I am so happy that you found your tumor when it was missed by so many tests. I am glad you brought up the emotional side of healing as well. This cancer thing is a lot to take in and get used to. I have been struck the past two weeks with how totally different I feel. I don't feel sick, but I feel totally changed. Life will never be the same. Feeling grateful that my cancer was caught, but feel like my whole world is different now. I am sure that after the surgery it will hit me on a whole different level.

Thanks so much for sharing. Wishing you as easy a recovery as is possible. The itching sounds terrible!

Mazy

December · May 2015

Awe Mazy, I think everyone here feels like we do - at least in the beginning. I'm 2 weeks out today - looking at surgery #2 in a little more than 2 more weeks. :-(

Yes mam - I do feel like I will never be the same again. And I bet we are no so different - I'm tired of it all. I'm tired of the stress, I'm tired of making choices, and I'm really tired of being in pain and uncomfortable. I'm pretty sure it's going to get worse, before it gets better. I wish I knew how to cheer you up (cheer us both up!) but it's just not in me today. And that's what keeps me going. That old saying, "one day at a time" - except for me, it's more like "one moment at a time'.

Wishing you Blessings and Comfort,

Vol4Life

Just diagnosed yesterday

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