Just dx: surgeon seems in a rush--I'm scared

Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Dear all, I'm Claire, I was just dx with ILC stage I, 6 out of 11 lymph nodes tested positive.  Aggressive, he says.  I had the tumor removed (2 c.) and he wants me to schedule bi-mastectomy next week and then move right into chemo followed by radiation. He said to wait on breast recon till I'm done with all other tx. I see an oncologist this Friday.  I wanted to get a second opinion from another oncologist and then decide what to do. I feel rushed, like the surgeon thinks it's going to go everywhere in two or three weeks,and that terrifies me. 6 months of chemo (he said it would be 6 months) scares the h*ll out of me too.  The hormone receptor typing will be done next week.  What is your experience?  Is this a usual timeframe?  I don't mind the mastectomy at all, btw--just wondering if I'm shortening my life by taking a week or two more to decide what to do.

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  • wallycat
    wallycat Member Posts: 3,227
    edited October 2011

    Did they grade your tumor already?

    How old are you?

    er/pr and her2 status??  Some of these may play in his decisions.

    I certainly think a week or two to get a second opinion are not delaying anything.  They say most cancers have been growing for several years before they are discovered.  

    That's just my 2 cents.

    I'm sorry you are joining this nasty club.  Welcome.

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  • DFC1994
    DFC1994 Member Posts: 163
    edited October 2011

    I had ILC stage 1,-2 tumors in my left breast and didn't even know it until after my mastectomies.I did know I had DCIS in right breast and decided to go ahead and have both breasts removed.I was Diagnosed with the DCIS OCT 19 09 and had surgery Nov 6th 09.Talk about a surprise when pathology came back after mastectomies ILC -2 tumors in left breast.My surgeon was as surprised as me.I had had an MRI prior to surgery that showed 2 small areas so that was another reason we decided to take both breasts off. I was stage 1,grade 1 on the ILC and Stage 0,grade 2 on the DCIS. I had no positive nodes though.But my understanding from my surgeon is he liked to get surgery scheduled within 2 to 3 weeks of diagnosis to help with stress on us.With me,even not having a clue I had ILC as soon as I heard I had DCIS I was ready to get them both off,the MRI just sealed the deal.I didn't want to wait the 3 weeks but had to.It was a long 3 weeks. everyone feels different.if you trust your surgeon i say go for it,if not you should be able to get a 2nd opinion fairly soon if you explained the situtation.personally for me they couldn't get surgery scheduled soon enough.I ,in fact asked the Dr the day he called to tell me my biopsy was positive for DCIS,PLEASE schedule me as soon as possible but I had to have the MRI first and he told me he likes to get his patients scheduled within 2-3 weeks of diagnosis because he knew how stressful it was.oh,mine ILC was ER  and PR positive to the highest degree.Good Luck and lots of prayers coming your way.

    Dee

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  • JudyO
    JudyO Member Posts: 225
    edited October 2011

    Dear Claire, Just wanted to let you know that I know exactly what you are experiencing. When I was diagnosed my surgeon was relaxed but my oncologist made me feel like I was on my death bed. He wanted everything done so quickly. I had my breast removed and they found a 2.2 cm ILC tumor with 7 nodes positive. My surgeon told me it was slow growing and may come back but that I had some time before this would happen. My oncologist rushed me into chemo, started me on arimidex (for the ER+) as soon as I was done with the chemo and then I was into radiation. No down time for me. I was so frightened I never questioned what they were doing. I just cried a lot. That was over 3 years ago and my surgeon is proving to be correct, it may come back but I would have some time. Right now I am doing well. I take my daily arimidex and go to my 4 month check ups. The best advice I would give you is take the time to do your own research and ask questions.

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  • toomuch
    toomuch Member Posts: 901
    edited October 2011

    Claire - Take a deep breath. You've had the tumor and your nodes removed already. Did you have a lumpectomy with clear margins? An MRI to evaluate your other breast? It's good that you're seeing the MO this week. You may want to seek a 2nd opinon from another surgeon.  I had ILC and initially a lumpectomy with 2/12 positive nodes. I initially planned to have chemo, then mastectomies, radiation and delayed reconstruction. I went to several BS and PS for consults. One said to me, you've already had your cancer removed, finish your cancer treatment and then have simultaneous mastectomies and reconstruction. Everyone finds the path that they're most comfortable with. I was happy to wake up from my mastectomies with breasts. It's most important that you don't feel rushed and that you take time to make a decision that you're comfortable with. 

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  • rosie06ct
    rosie06ct Member Posts: 220
    edited October 2011

    my suregon was in a real rush, however once the onc. ran her tests they found bone mets so the surgery  never happened... she said mine is slow moving  but is in my lymph nodes up to my neck and pet scan also showed  a spot of cancer in the other breast.... so am on Femara and zometa treatments once a month.. after 2 months i just had a cat scan and will find out the results on the 11th...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Dear all, thank you. Some of these are scary stories; I'm trying to tell myself that my situation is unique to me. 

     I don't know where I would look on the path report to find "grading". There is no place with a "grade" on it.  I don't even know if this cancer is hormone-receptive yet.  We just got the pathology report yesterday!  I did have a clear (but close) margin in the tumor and lymph node removal.  No check in the other breast at all. I just had the lumpectomy last Thursday afternoon.He said he didn't need to take any more lymph nodes when he does the mastectomy.I am 53, premenopausal.  FSH test two weeks ago (just to see where I am) shows me at 19, which is just on the border for perimenopause. No symptoms yet at all for peri-none.  Started my period just before I turned 12.

    I am a university professor and am worried about losing my job. It's a year to year contract--no tenure (hardly anyone has tenure these days). I need to try to finish out the semester, which could end the end of next month.  I can take a few days off for surgery and do a round of chemo, but I wonder how my surgeon knows that 1)  I need a total mastectomy RIGHT NOW, 2) Will need 6 months of chemo, 3) will need a port put in. How does he know that for sure?  He also said we didn't need to have a second opinion on the pathology report,although we asked for it and will probably then do it ourselves.  And I have a PhD friend who works at a large hospital in Phx in cellular research/biology, and he suggested we get a second opinion on the pathology from a place that handles a lot of breast cancer. 

    Other women in the area tell me I'm going to love this oncologist I'm talking to tomrrow,but I don't have to LOVE her--I just want her to give me the best possible tx with the highest degree of success--that's all.

    He's a good surgeon and I trust him with surgery, but he's not an oncologist, and if there is a second oncologist that can prescribe a protocol that fits better with my needs then I want to hear their story before hiring the first oncologist I meet tomorrow. Here's another piece of the story.  I live in a small city in No. Az with mediocre health care. Our hospital and cancer ctr aren't accredited.  It's 2 hours to Phoenix, where there is plenty of good care.  I lost my husband 15 years ago to aggressive cancer of the head and neck; he got tx HERE locally, and they botched his Hickman catheter (fell out of his check half-way through), his chemo, and his radiation. We had been married four months when he died.

    @Toomuch, thank you for sharing your story about chemo and then mastectomy. I was asking myself the same question--if I'm getting chemo anyway, why go through two surgeries--one for mastectomy, and then another 7 months or so later for reconstruction?  I too like the idea of waking up with new breasts.  But again, I'm not even sure yet that I WANT reconstruction.  I'm a size AA, so I already look like a guy with big pecs in a jog bra.  

     So you can see why I'm very leery of agreeing immediately to what I feel is being pushed on me--and afraid of making a emotional decision out of desperation, fear, and near-panic.  I am completely overwhelmed with so much information and I'm still in shock. 

    Anyone have any ideas now that I've shared that info? Thank you all so much.  Prayers for you...

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited October 2011

    Claire, when you see the onc, ask her to go over the path report and explain it to you. Also ask for a clear explanation of the tx options she offers you.

    I don't understand why the surgeon is pushing for a bilat mast when there is no imaging of the other breast. Are you BRCA+? Has this test been done? This doc is a surgeon, not an onc, and shouldn't be the one making chemo/rads recommendations.

    Since you've already had a lumpectomy, the suggestion to have chemo (and rads if you need them) before more surgery is a good idea. Not only does it deal with any cancer that might be left but it also gives you a chance to really research your options and decide what you want to do as far as recon - have it or not, what type, etc.

    All these things should be discussed with your onc. If you feel the one you're seeing soon is a good fit then that's fine, otherwise try to see someone else and have the same discussion.

    As far as where to have your tx - with the experience you had with the cancer center in your area, even if they've improved tremendously since your husband's death I doubt if you would ever be able to trust them completely. For your own peace of mind you might be better off with the longer commute to Phoenix.

    Best of luck.

    Leah

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  • nowords
    nowords Member Posts: 423
    edited October 2011

    I had ILC diagnosed at age 50. 10 annual mammograms showed nothing...noticed breast changes..went to first breast center...rush rush...overwhelmed and went for second opinion at Mayo Rochester. Team approach-Breast Dr., Oncologist, Radiologist, Surgeon, Plastics an Recon Consult, Lymphedema discussion. Ultra sound showed 2.5cm tumor, MRI showed 8.5. BRAC 1&2 negative.

    Pathology prior to surgery showed ER & PR positive HER2-. Grade 1 (Slower growing) Oncologist said it was there at least 10 years...mammograms miss them alot. Was told chemo would be only 1 to 3% effective for me. Since I was stage 3 - I went for the Dose Dense Chemo prior to surgery I had 4, given every 2 weeks for two months.. (Pathology after surgery showed no effect on tumor or nodes, but PET scan was clean .) Most of the Team thought I should have single MX if that was my choice. Breast surgeon afraid of stats for ILC in other breast-advised double MX. Chose single MX and annual MRI on remainig breast. If I had been BRAC positive I would have done double. 

    I was diagnosed in April 09 - Chemo May-June 09  -  MX July 09 - Rads Aug-Sept 09.

    I did not want implants. Knew that if I wanted recon, I would do the DIEP procedure. No history of any cancer in family...too shell shocked to rush into recon with all the other stuff. I did delayed DIEP starting May 2011 and am almost done...with good results.

    I am almost 2.5 years out from diagnosis, I have blood work and exams every 6 months, take Tamoxifen daily and have annual mammo and MRI on remaining breast. Bone density tests every two years. Tests and scans only if I am symptomatic. I love the Mayo team. I did recon with Dr. Marga Massey and Dr. Sullivan in New Orleans.

    Best of Luck in your treatment. Advocate for what you want and find a team you trust.

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  • toomuch
    toomuch Member Posts: 901
    edited October 2011

    Claire - Do you have someone who can come with you to the MO appointment. Immediately, after diagnosis, it can be difficult to concentrate on what docs are saying and having 2 sets of ears can help. If you're going alone, bring along a notebook and take notes that you can reread later. I did this with every one of my consultations, even if someone was with me!

    You have the right to know a lot more information before making your treatment decisions. The grade and hormone receptor  & Her 2 status are important. An MRI to look for multifocal disease in your affected breast of problems in the other can be requested if the results will impact on your decision. If you should decide to move forward with a mastectomy or bilateral, don't underestimate the importance of your surgeon's experience. All of the breast tissue can never be removed but there are surgeons who specialize in breast surgery and one would think that their increased experience would enable them to remove more breast tissue. It is probably worth a 2 hour trip to get a 2nd opinion if you choose to go forward with more surgery.

    I don't know if there are laws in Arizona regarding job termination when an employee has been diagnosed with cancer. There are laws in some state. Even if it's legal it's certainly not ethical! I'm sorry that you have this worry at this time too.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Thanks all, my husband has been with me every step of the way so believe me, I'm not doing this alone.  He (we both are academics) already has researched, set up a notebook, captured dialog from our previous appts with the surgeon, etc.  I interview the first oncologist today.  Hopefully will have appt in Phx with second team in the next week or so. 

    Surgeon didn't order an MRI because I think he heard me say before the biopsy that if it was there I'd rather just get rid of them and not worry.However, I never thought the path would come back positive, you know what I mean. I'm just wondering why I have to have surgery before chemo-why not after when I'm mentally able to face it and have a bit of time to prepare? -what's the difference in protection?  I'll ask the oncologists that of course.

    I heard about dose dense chemo another thing I'll check out.  I know Susan Love said it only increases chances by 2-3 % but I want that 2-3%. We'll see what both teams say.

    I don't have any more info about my quantitative pathology, tumor (ugly word, isn't it?) specifics, etc. I don't really know if that will be helpful for me or not at this time. I'm not the expert, and I'm already in information overload--and that kind of info seems most important for the team to prescribe treatment and less important for me since I'm already committed to everything they recommend anyway. I already have breast cancer: let's just get it gone.

     I might care about knowing every single detail later, but right now I can't process it anyway. IK've only known for a week that I have this, and only known for less than 48 hours that I have to have every single procedure, something I hoped not to have to do.  And can't stand any more bad news, and I'm afraid any more medical info about my case would just flatten me. It would only hinder me from my resoluteness to get through this and live a healthy, very long life, and that is really the only thing I feel I need to commit to right now.

     I'm also completely wiped out with talking about it/thinking about it/seeing it 24/7.  Sharing the news is exhausting and I've probably talked to 40 people so far about my dx.  I simply don't have any more words for that at present.

    Thanks for all who replied.  I'm struggling, but putting one foot in front of the other.

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  • sherrmue
    sherrmue Member Posts: 25
    edited October 2011

    Hello. This is my first posting.

    Get a second opinion! Sometimes the treatment plan will be a little different and you can can make some choices. I guess there are some cancers that are so agressive something has to be done within a week or two, but usually not. My opinion is to interview an oncologist who only treats breast cancer if you can. They will have knowledge about the most current treatments and their focus is only on breast cancer. 

    I recieve treatment about 125 miles from my home and it has turned out well. Hasn't seemed like a big problem. Drove myself back and forth to chemo without any problem. It is nice that you have a supportive spouse to help and comfort you!  

    Recieving a breast MRI is standard practice in my area for initial diagnosis. 

    My mother had the same issue with being rushed to surgery. Thankfully, her oncologist advocated for her and she had a lumpectomy instead of a mastectomy. She is alive, cancer free and just turned 71! 

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