Very confused about diagnosis and next steps

Victoria67

Hi.  This is my first post and I'm really hoping some of you knowledgeable and brave ladies can help me. I'm 43,  feel very alone and scared. Recently diagnosed with DCIS originally, had lumpectomy (recommended by surgeon) with wire localization and SNB on 11 Nov. Incision from nipple to armpit. Breast looks quite ok considering 20% taken, I thought I'd been lucky to get such a good result! Surgeon phoned me Friday, pathology shows area of DCIS is large which he already knew (70mm) but unfortunately extends under the nipple so no clear margin on that side.  They found two micro invasive tumors (1mm and 5mm - are these considered small?) and it's 'average' grade (not sure what that means). SNB was clear, results show ER+/PR+, no Her2 result yet.  Surgeon says I have 2 options - further lumpectomy with removal of nipple or mastectomy.  Now mastectomy is on the cards, it wasn't before. Very confused about what my diagnosis means and which option I should choose. I know it's my decision and no one can make it for me but I feel very worried about how I can be sure I'm considering all the right factors as I don't feel I really understand it all.  Any advice on how you came to your decision would be greatly appreciated.  Thank you

debbie6122

Hi Victorria- Im sorry you have to join our group, but welcome, you will get lots of support here from some wonderful ladies.Not sure what average grade is maybe about a grade 2? I havnt heard it said that way before but im sure others here have and will be able to answer that better for you. MM are small tumors, I would wait to find out what your her2 is and also get a second opinion, Its good the SNB was was neg but not having clear margins might make me want to consider a mx  There are a lot of woman here with dcis and havnt had a mx. I know you must be scared and worried but dcis is early stage and treatable If you do decide to have a mx you can get thru this, we will all be here for you, i will check back and bump this up for you so others might chime in here to, keep us posted (((((((hugs)))))))

Debbie

Victoria67

Thanks so much Debbie for your reply, I really appreciate it.  It's great to know there is support and people who understand what it's like to be in this situation.  I'm sure this is the case for alot of people but I had absolutely no idea there was anything wrong with my breast, no lump, no symptoms, nothing.. I only went for a mammogram because my GP thought I should as I'd never had one before and I went along thinking I could tick that particular box and then go travelling overseas for a month or so (I'd recently left my job).. oh well.  I'll wait as you suggest to find out the her2.  Just one more question, does the presence of micro invasive tumours mean that my diagnosis is IDC and not DCIS anymore? 

Thanks again

Victoria

dlb823

Victoria ~ So sorry you're going through this.  I had a similar situation (see my bio page), so know exactly how surreal it is to be told they didn't get it all and that a mastectomy might be necessary.  You sort of feel like it's a nightmare and you wonder when you'll wake up from it.

I strongly second Debbie's advice to get a second opinion.  The surgeon you have might be absolutely wonderful, but talking to a 2nd one (preferable a breast only surgeon) may give you additional insight to help you figure out your next best step.  Also, if you do decide on a mastectomy, you will also want to consult with a plastic surgeon about reconstruction options.   

In the mean time, I don't think you need to feel rushed into making this decision.  You've had the worst part, including the invasive lesions, removed, so if you need to take a few weeks to wrap your head around your situation, talk to another surgeon, and be sure you make the right decision for you, I think you should do that.

Oh, and if you want a recommendation for a second opinion, you won't go wrong with an NCI-designated cancer center.  Here's a list.  They will have breast surgeons and plastic surgeons under the same roof, and be able to offer you the latest in research and technology:  http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

Hope this helps.  We're here for you!    Deanna

PS ~ To answer your question about DCIS & IDC... it means that you have both.  This is not uncommon, but the invasive part needs to be taken seriously and may mean more aggressive treatment, depending on the entire picture.

AsiaYM

It is quite often to have unclear margin with lumpectomy because human eyes could be detect mcro stuff only machine could.   I third two ladies' advice to get second opinon to help you make the right decision for you.  Gentle hugs, Asia

shells43

Hi Victoria,

I'm sorry for everything you are going through. I'm also 43 and it was a big shock to me to be diagnosed with BC. I also had a large tumor (9.7 cm = 97 mm) of IDC, so a mastectomy was a no brainer for me. I was relieved to have the breast gone and the cancer out. The more you read about lumpectomies, you will see that often they have to go back in again to take more tissue. After a certain point there is not much worth keeping. I know it is a deeply personal decision, but I just wanted to let you know that it gave me peace of mind to have all of the tissue removed. The recovery was not too bad and I have full range of motion now (it does take some time and effort). I wear a prosthesis and noone can tell. I'm happy with my decision. You are not alone, we are all here in the same boat, wondering what the heck happened! :P

Blessings,

Shelley

redsox

I had a tumor close to the nipple with margins good enough to have radiation therapy and keep the nipple, but I was close enough to losing it to be able to relate.  I think most women would opt for mastectomy if they can't keep the nipple, but hanging out on these boards makes me wonder about that.  For women who have a mastectomy and reconstruction the nipple replacement by tattoo or surgery is the last step and many women decide to skip it.  Maybe someone in that situation can explain the rationale for you.  That makes me think lumpectomy and radiation is worth considering even if you cannot keep the nipple. 

I would recommend that you have a long discussion with your breast surgeon about the pros and cons of each.  Ask how the breast is likely to look after all surgery and all healing are done. 

Also, think through your own preferences.  Which of these shows your feelings -- do you want to avoid mastectomy?  ...or avoid radiation therapy?

edited to add: even with a mastectomy, radiation therapy is sometimes necessary but usually not.

malleme

Victoria, so sorry you had to join our group.  I say get a second opinion like the rest and make abosolutely sure that it is a Breast Cancer surgeon very important not just a surgeon who does a lot of breast cancer surgeries.  There is a huge difference although they are all good ones mode is to save the breast the other is just to take out.  the other thing wait for your Her2neu results. so you know what you are dealing with.  I was 45 when my journey started.  I got a mast with immediate recon.  I finnaly got the nipple recon and coming up on my 2 yr anniversay after chemo.  Lump = rads and chemo usually, Mast =chemo. Thinking back I did make a few mistakes ones I'n not upset about but that I would have changed.  If I had went to a breast surgeon I could have gotten a nipple sparing mast.( mine was behind the nipple too and If I had went to a Plastic surgeon who just does Breast reconstruction I might not have gotten implants.

Like everyone has said think about what you prefer.  My sister and cousin both have had lumpectomies my cousin had 3 separate ones cuz they kept not getting clear margins.  She knew she couldn't go thru  recon and absolutely did not want to loose her breast.  That was her identity.  She ended up having e+/P+ her2+ when thru chemo and rads and is doing just fine.

They both get so anxiety ridden going for mammograms.  I don't have that worry with a mast. But I knew I didn't want to be on the lookout constantly, already did that for 14 years.

You have time so wait for the results and get an oncologist, now.  Discuss what treatment you will need.

WE are all here..

tideknott

Hi Victoria,

I'm with everyone who says get a SECOND OPINION and by a breast surgeon not a general surgeon.  If you have a cancer center near you go, most of them take most all insurance.  I am driving 60 miles each time to Moffitt Cancer Center in Tampa Florida, but they have everything under one roof and they are fabulous at scheduling as much in one day as possible.  For instance: I had a lymphography appt at 9AM SNB at 11:45 AM.  I was finished with the first procedure,because my lymph did not drain, they paged by BS and I was in surgery at 10:00.  The dye didn't drain- a whole other story but he finished and I was home the same day.  He set up my Plastic Surgeon appt, follow up with him and a PET scan (because my lymp didn't drain) all on Dec 8th.  They never say a word if you are early or late.  They know you are driving a distance.  My BS does not have office appts on Wed. and the 8th falls on a Wed.  He said no problem, I'll see you between surgeries.  

Remember all a BS does is boobs!  He will explain your situation clearer then someone who does heads to toes.

It's a scary thing, so much to think about and handle.  I was just diagnosed in a month ago and have made my decsion for a DMX with immediate recon (TRAM flap).  I just don't want to ever worry about it again. I'm 55 and post menopausal from complete hysto in 1998.  I will have to take and ER blocker. Make sure and ask your BS about recon after rads. The choices I believe are more limited.

I know when I was first diagnosed I wanted everything done now!  But cancer grows slow and you have time to make the decisions that are right for you.  Best of Luck and I am sending you huge cyber hug!

Beckie

Luah

By all means, discuss this with a knowledgable breast surgeon.  Please be aware that rads are sometimes indicated for Mx patients - depending on tumour size and location, node status, for example.  Also, while the risk is quite small, cancer can recur locally after a Mx. We all need to be vigilant.   

Drim

Victoria - sorry you had to join us. I was also 43 at diagnosis. I was wondering if you've had an MRI. If not I'm wondering if you could have an MRI that may be able to tell how extensive the remaining DCIS is which may help you make a decision.

As for size of tumor 1mm is extremely small and would most likely never be picked up by any kind of imaging tools. 5mm is also very small. It's borderline between what some call Stage 1a vs. 1b. It's small but it still has to be taken seriously. You already know it's ER/PR positive. Once you find out the HER2 status and if it happens to be negative you will want to get an Oncotype test. This will help guide post surgery treatment decisions.

There is a lot to learn but we are here for you.

Victoria67

Thank you all for your replies, I really appreciate it and you have given me some important things to think about as well as some good questions to put to the surgeon. I'm so glad I found this site and it's made me feel better already. By the way, I do have a breast surgeon, not a general surgeon and he really did do a great job on the first lumpectomy.  I agree with you all though that I should get a second opinion, I hadn't really considered that before. There seems to be so many variables with treatment that I agree it makes sense to get a couple of opinions so I'll look into that asap.  I went back to see my surgeon today, to discuss my pathology in more detail and my options.  Turns out that the HER2 status is negative and he thinks (although I haven't met with an oncologist yet or had the onco test) that I won't need chemo but I'll probably need tamoxifen.  He said that he thinks either mastectomy or second lumpectomy with removal of nipple are both suitable surgical options for me and he said he would tell me if he believed mastectomy was the only option but I'll see what another breast surgeon advises too.  I'm worried that it will look quite odd once the nipple's gone and the re-exision has taken more tissue so there may not be much left to keep.  I'm trying to keep my thinking away from aesthetics and focus on just what is the best treatment to avoid a recurrence but the thoughts creep in sometimes!  I'll also check out the recon after rads options as I think Beckie you are right, choices are a little more limited once you've had rads.  I'm sure I will be the type to get anxiety ridden when going for mammograms too which is something for me to factor in on the plus side of a mastectomy, plus I have dense breasts and the mammogram machine is not my friend at times!  Thanks again for taking the time to reply and for your advice and hugs!

tideknott

I'm glad your her2 was neg. I too had to wait for FISH to make sure since my first path came back with an HER2 1+. A huge sigh of relese I know.  You sound like your settling in with the dx and I know the feeling.  It is all so overwelming.  Just remember it's your body and you need to make your own decisions and not be swayed by friends, family.  Like with me I was so greatful for the these boards and my friends and family it helped me sort it all out.  then one day I was at work and I just said outloud I have made my decision.  Before saying anything to them I called my DH and told him and he was fine with it.

My decision is drastic, I really only need to have rads and er blocker.  I could be done, low grade tumor no nodes.  I have dense breasts, fibrosistic breasts and have hade more MRIs and Ultrasounds on my other breast then I can count on one hand.  I decided to stop chasing it and take 8-12 weeks of my life and have it over.  Some think I am crazy.  It's my body!  I also lost my best friend for stopping where I could.  She had rads and blockers,9 years later it came back in that breast as IBC, triple neg.  She lost that battle. Rare but does happen. There is a slight chance it can back after MX.  Nasty little critter isn't it?

I can tell you are strong and will make your decisions wisely. I am so glad you have a BS.  The GS that did my lumpectomy was fabulous, but I wanted someone who just takes care of breasts and I found a great one.  I am definetly a newbee and I am sure there are a lot of gals on here that have more answers then I do.  I am just a take the bull by the horns kinda gal!

Best of luck to you in your path to being cancer free!

Hugs,

Beckie