Surgery/chemo/rads dilemnas-overwhelmed

DivineMrsM
DivineMrsM Member Posts: 9,620
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hello, I'm looking to get some confusion cleared up.  My story so far:  a Jan 3 biopsy reveal ILC.  Had an MRI next.  After receiving those results, the BS nurse sent me a video of my choices for surgery, lumpectomy or Mx.  Today I had a consultation with the BS.  She is saying that because my tumor is large, perhaps 5cm by 3cm, she does not think lumpectomy is an option. I was so saddened, because I thought prior to going to the BS that I really had an option here.  So I am trying to wrap my head around Mx thing.  It is such a shock to me.  I must have been in some kind of denial or expectin' a miracle or something!

So far, I've been told I am ER+PR+HER-  .  The MRI and several sonograms as well as several physical examinations by two doctors are not showing any abnormal lymph nodes or any swelling.

Is it possible to have a Mx and not have to have radiation or chemo?  I am wondering this because I may have no lymph node issues.

Also, altho I completely realize each woman's choice is a personal one, I can't imagine having a BMx at this time, with BC found in only one breast. And really, the BS said nothing about a BMx.  I am a petite woman with size DD breasts.  To have both gone...not sure how I'd deal with that.

 With all that said, I cherish life, have much to live for, and want/plan to be around for a long time!   

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  • Gitane
    Gitane Member Posts: 1,885
    edited January 2011

    Hello MrsM,  Welcome to the ILC forum, though I know you'd rather be elsewhere.  When I saw the word "overwhelmed" I must say I had this immediate connection.  How can we go through this without being overwhelmed?  Our worlds are surely shaken with this diagnosis.  Amazingly, when we are the most impacted with the news we must educate ourselves and make decisions.  No fair! 

    Yes, it is possible to have a MX and no radiation or chemo.  Your doctors will help you make educated decisions about these two options.  In my case I had neoadjuvant chemotherapy then a mastectomy (with reconstruction) and did not need radiation.  It is hard to do, but if you can get second opinions on things it helps a lot.  This is not about trusting your doctors.  It's just that the more information you have the more comfortable you will feel with your choices.  Meeting with surgeons, plastic surgeons, radiation oncologists, and oncologists can help.  It takes lots of time and seems to draw things out, but it can really help you understand your choices. 

    Let us know how we can help you.  PM me if you would like to talk.  Hugs. G. 

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  • keno41
    keno41 Member Posts: 91
    edited January 2011

    I had a bilateral mastectomy with  no chemo or radiation. It is possible, it just depends on many factors. My tumor was 3 cm and I am very small breasted so it made sense. I also chose to have a bilateral because I  didn;t want to go through this again. I am 53. No radiation because of the location to the chest wall, and my oncotype DX score was 15 and both oncologist and surgeon said chemo would not benefit me . I am on Tamoxifen for 5 years!  Good luck

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  • keno41
    keno41 Member Posts: 91
    edited January 2011

    Funny, I am a teacher's aide also, I just noticed your profile!

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  • toomuch
    toomuch Member Posts: 901
    edited January 2011

    MrsM - The time right after diagnosis is the worst. Still in a state of shock you have to make so many decisions. You can tell from my name, how overwhelmed I felt. The advice that I would like to give you is don't feel like you have to rush. Take the time to get at least a second opinion.

    If you would really prefer to have a lumpectomy schedule an appointment with a medical oncologist to see if having chemotherapy prior to surgery is an option for you. Many women with large tumors do this and then they are able to have a lumpectomy rather then a mastectomy.

    Most importantly, before you go forward with surgery, be sure that you are comfortable with the plan. Wishing you the best.

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  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited January 2011

    Hi I am confused as well and see the oncologist  in a few days if the next snow does not come. I have just found out that I have ILC stage 1 (5mm), and are in the process of scheduling a bi lateral and recons. At that  time they will do the lymph nodes. I am hoping that if lymph nodes are ok that I could be done - like not need anything else.  I see others are  taking tamoxifen- I thought that if you have no breasts your risk goes to 2%-  anyone have thoughts. 

    Yes- it is so much to plan and decide- 1/13/11 already seems so long ago.

    take care to all

    thanks

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  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited January 2011

    Hello Divine, I too am sorry you are joining our group.  My story is pretty similar to yours.  I had a clean mammogram in May and found a large lump on the top part of my breast in August.  It was a 4 x 4 x 3 ILC lump and the surgeon believed that it would take too much of my breast to have a lumpectomy.  It was also a very aggressive tumor and grew palpably in the 12 days between diagnose and surgery.  When I was being prepped for surgery, the surgeon came in and the last thing I said to him was that if it wasn't as bad as it looked he could still do the lumpectomy.  I was devastated about losing my entire breast.  Also, because I had positive nodes I was not a candidate for immediate reconstruction and that was a pretty big blow as well.  I am 42 with no family history, I have one breast and I am bald.  The road has not been easy or fun, but I am getting through it.  Also, after the rt mastectomy, my BRCA test was postive and I am facing another mastectomy shortly after treatment is over.  I am telling you all of this to say, we are all here to support you and help you through this difficult time.  We truly understand your pain and all the life altering decisions you have to make.  Please let us know what you decide to do.  In the end, you have to be comfortable with your decisions.  My thoughts and prayers are with you during this time!

    Susan

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  • somersher
    somersher Member Posts: 13
    edited January 2011

    My saga began one year ago right now.  ILC 2 cm ER & PR+, HER2-.  I was pretty dead set on a lumpectomy.  My husband is a surgeon, and I consulted a former partner of his who only does breast cancer surgery.  Additionally,   the guy who actually did the surgery is a friend who did a fellowship in surgical oncology at highly respected MD Anderson - also only does breast cancer surgery.  All pointed out that survival rate is no greater with mastectomy than lumpectomy, so off I went to the OR.  Of course I wanted to keep my breast!!!  Path report came back showing micromets and unclear margins, so I returned to the OR a month later for a second lumpectomy.  Incredibly, once again, unclear margins.  This is not common but not unheard of with lobular.  I was thus basically forced into mastectomy, and my thinking completely changed; I wanted the other one off also, as I didn't want to go through all that stress again.  Decision turned out to be the correct one, as the path showed "atypical hyperplasis" (aka pre-cancer, sort of) in the "good" breast.  I'm told that lobular tends to recur on the other side more often than ductal.   I was absolutely terrified of the thought of chemo, but Onco score came back at an amazingly low 5, so all consultants agreed no need for chemo.  So here you have someone who had to have three surgeries but no chemo - it is possible.  (Incidentally, I happened to be one of the weird ones who also got an infection in a tissue expander (did immediate reconstruction), so I had to have that removed and replaced, then another biopsy on a suspicious lump under arm in Nov - all in all I went under the knife 6 times in 2010, and have another yet to go to get the permanent implants.  This whole thing is not fun, but it does get better over time . . .)

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  • aussieched
    aussieched Member Posts: 244
    edited January 2011

    Hi Somersher,

    Have only just found your post.  And boy does it make me feel a bit better.  My saga started in 2007, aged 52, diagnosed after mammogram  with 18mm,  IDC, Grade 1, sentinal node positive with micromet, ER+ PR+ HER - BC.

    Initiall had lumpectomy, to then be told, no clear margins and positive sentinal node.  2nd surgery next week for auxillary clearance with total of 30 nodes taken out, and further surgery to get clear margins. Thankfully the further 29 nodes were clear.  I was given the option of chemo or having my ovaries out and was told that the oophorectomy was a good option for me.

    At the time I thought the oophorectomy was a good option also and went ahead with it, and then had radiation and started Femara.  After I got over the shock of all the treatment, only then did I decide to do some research, as I basically had just taken the advice of my treating team, and as I was living away from home for months during my treatment (as I live in the countryside) I did not have the internet to be able to research.  After  I got home and did my research I freaked out, as in just about everything I read, it was saying that I should have had chemo.

    It makes me feel better to have read your info, as everyone has been shocked that I did not do chemo when I had a positive node.   Also most of the posts here on BC Org also indicaate that they had chemo for positive nodes. My doctors are very well respected here in Australia, so maybe they were also on the same wavelength as your specialists.  Thanks for your info, it does give me hope.

    ched

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  • chiefswife
    chiefswife Member Posts: 70
    edited January 2011

    Hi Divine MrsM. I was diagnosed with ILC and DCIS all at the same time, one sitting right on top of the other. My cancerous mass was 4.5 centimeters, I started 4 rounds of Cytoxan/Taxotere, once I finished that I went into surgery. It had shrunk so much that there was hardly anything left for the surgeon to remove, but he did get something. I had a lumpectomy with clean margins!!!!! Then I did 33 radiation treatments, I'll be honest with you, I was scared to do the radiation but I got through it and I'm still here. Now I'm on Tamoxifen and it's been 6 weeks since I started, and I am not experiencing any side effects. So far I have been lucky in this entire cancer ordeal. I wish you the best in whatever road you take. It's not an easy choice. I am thankful that I got to keep my breasts, I will have my yearly mamograms and anything else they say I need. I pray I am cancer free for the remainder of my life.

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  • ---
    --- Member Posts: 197
    edited March 2011

    Hi MrsM,

    I am fairly new here as well.  In my understanding, one can have MX with chemo following after.  Radiation therapy, as explained to me by my BS, is identified depending on the size of the tumor and number of nodes affected.  Tumor size bigger than 5cm and nodes affected more than 4 will need rads.

    I don't know where you are now in terms of your surgery and treatment.  But if you don't have nodes involved, I would assume you might just end up with chemo after your MX.  But again, i'm not an oncologist.  I'm just sharing info based on what I learned from my BS just this afternoon.

    Best of wishes,

    Laureen Romero

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  • soon2bsurvivor
    soon2bsurvivor Member Posts: 22
    edited March 2011

    I am in a similar situation, trying to understand what type of chemo.  My tumor was large and the opted not to shrink first.  Now its about AC or TC.  I have one node with cancer, and I dont know my margins.  Has your Onc advised on your chemo? 

    I don't understand the circumstances when someone would need chemo and when not,  Nor do I understand when someone needs radiation or not.  It all it overwhelming.

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  • Seabee
    Seabee Member Posts: 557
    edited March 2011

    Mrs M-- If you feel strongly about losing a breast, get a second opinion, preferably from an experienced breast surgeon. Lobular can be more difficult than ductal to remove because it tends to spread laterally, which on an MRI can make it look larger than it is. Mine looked as large as 6 cm on MRI but was ultimately sized at 2 cm. I did have to have a second surgery to get clear margins, but that go was successful, with good cosmetic results. It helps to have a large breast. 

    With the lumpectomy you will need radiation; with a mastectomy unsually not.  Don't count on the nodes yet. Only a biopsy can determine if they are clear.

    Chemo is a more dubious proposition. It seems to work best on ductal and more aggressive lobular, but less aggressive lobular often doesn't respond to it, and it may be wiser in that case to opt for hormonal therapy. You might consider the pre-operative chemo to see if it does shrink the tumor, if it is actually 6 cm.

    There is a test called Oncotype DX which can also give some indication of whether or not chemo will work on your type of tumor.

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  • Seabee
    Seabee Member Posts: 557
    edited March 2011

    Mrs M-- If you feel strongly about losing a breast, get a second opinion, preferably from an experienced breast surgeon. Lobular can be more difficult than ductal to remove because it tends to spread laterally, which on an MRI can make it look larger than it is. Mine looked as large as 6 cm on MRI but was ultimately sized at 2 cm. I did have to have a second surgery to get clear margins, but that go was successful, with good cosmetic results. It helps to have a large breast. 

    With the lumpectomy you will need radiation; with a mastectomy unsually not.  Don't count on the nodes yet. Only a biopsy can determine if they are clear.

    Chemo is a more dubious proposition. It seems to work best on ductal and more aggressive lobular, but less aggressive lobular often doesn't respond to it, and it may be wiser in that case to opt for hormonal therapy. You might consider the pre-operative chemo to see if it does shrink the tumor, if it is actually 6 cm.

    There is a test called Oncotype DX which can also give some indication of whether or not chemo will work on your type of tumor.

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  • Seabee
    Seabee Member Posts: 557
    edited March 2011

    Mrs M-- If you feel strongly about losing a breast, get a second opinion, preferably from an experienced breast surgeon. Lobular can be more difficult than ductal to remove because it tends to spread laterally, which on an MRI can make it look larger than it is. Mine looked as large as 6 cm on MRI but was ultimately sized at 2 cm. I did have to have a second surgery to get clear margins, but that go was successful, with good cosmetic results. It helps to have a large breast. 

    With the lumpectomy you will need radiation; with a mastectomy unsually not.  Don't count on the nodes yet. Only a biopsy can determine if they are clear.

    Chemo is a more dubious proposition. It seems to work best on ductal and more aggressive lobular, but less aggressive lobular often doesn't respond to it, and it may be wiser in that case to opt for hormonal therapy. You might consider the pre-operative chemo to see if it does shrink the tumor, if it is actually 6 cm.

    There is a test called Oncotype DX which can also give some indication of whether or not chemo will work on your type of tumor.

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited March 2011

    Hi, Guys. Hope this is helpful. I had a mammogram and then a sonogram that showed 'something' that was immediately biopsied and found to be about 2cm ILC. Follow up MRI of both breasts found another smaller tumor far from the first one which all but knocked out the lumpectomy option as I would have been left with a 'swiss cheese' breast. At that point I wasn't so unhappy about the mx option as I was getting very stressed about the possibility of even more tumors in the same breast as lobular is notoriously hard to see, and can be multifocal. The good news was that the right breast was completely clear. My BS and radiologist were adament about holding onto the healthy breast as they said that MRI's are very good at catching very early stage lobular tumors. They also said that I could always come back later and do it, but not to make a hasty decision as you can't as quickly put it back. It wasn't an easy decision as I was worried about regretting just not whipping them both off and being done with the worrying to a large degree. On the other hand, there are times when I'm glad to still have one of the originals. This is a deeply individual decision. I also didn't need rads or chemo due to a low oncotype score, so that is possible. I am on tamoxifen and Zometa IV bianually. Some achey joints and weepiness, but overall doing fine with them. Grateful every day that we have such good docs and meds available. Good luck, hang in. We are here for you.

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  • kayakgirl
    kayakgirl Member Posts: 172
    edited March 2011

    I know a breast cancer diagnosis is overwhelming, but please make sure you are using a breast cancer surgeon that works with a plastic surgeon.  They can work together. My breast cancer surgeon send me to a plastic surgeon and they both operate on me so I had my bilateral mastectomies with immediate reconstruction (I had enough skin otherwise I would of had expanders put in at the time of my mastectomies). Also, the standard of care is to first do a sentinel node biopsy instead of a full lymph node dissection unless your MRI or when the surgeon is operating see more suspicious lymph nodes. and if you are not getting the standard of care CHANGE breast cancer surgeons

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  • trail2
    trail2 Member Posts: 98
    edited March 2011

    I am also anxious about my appointment with the oncologist this Friday.  I had a BMX 3/2/11, with tissue expanders.  Although my dx says stage 1, it says grade 3/4, with multi foci.  I had three tumors 1.1 cm, 5mm, and 8mm.  I am ER 80%and PR 90% positive.  O/7 sentinel nodes negative and Oncotype dx score 25.  I was told I would be on Tamoxifin for 5 yrs, no radiation.  When the Oncotype test came back on the high side of intermediate, my BS said that I might need chemo.  I am really concerned and anxious to hear what the Oncologist recommends.  My mother had BC 15 yrs ago.  I do not know her diagnosis, but do know that her tumor was much larger than mine, and had 9/16 nodes.  She participated in a trial for chemo, and two years after developed a chemo induced type of leukemia which caused her death.  I am in the process of trying to get info on exactly what she was given, because I am afraid to take the same thing.  I have read so many reports about chemo not being worth the side effects to slightly reduce recurrence rate.  I want to do what ever will help, but just really afraid of the side effects.  I have read about the TAILORx trial, that deals with intermediate oncotype scores.  Are there any other intermediate range ILC sisters out there ? or any other suggestions.  Thanks

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