Things are Moving too Fast!

keeshondmom
keeshondmom Member Posts: 18

Diagnosed with ILC last week after biopsy; met with surgeon today who felt lymph node involvement. When she presented my case this afternoon to her colleagues, it was felt I had at least 6 lymph nodes that are involved. I have pretty much decided I will have to have a mastectomy, but I'm confused about what happens next...chemo and/or radiation. Surgeon says depends on a lot of factors...I'm so overwhelmed and confused. Originally was going to travel to Seattle (about 2 hours away) for second opinion; now it sounds as if I don't really have time to do that. Help

Thanks so much for all of your replies! Helps so much to hear from others. Like all of you, I want to wait although I'm sure ultimately I will have the mastectomy. One important detail I forgot to share...17 years ago I had a melanoma removed surgically from my left arm. This surgeon fears it may actually be melanoma that is in the lymph nodes and not breast cancer cells. I told her I know my lymph nodes were not biopsied at the time and that seemed to run up red flags for her. I know at the time the melanoma was excised, I was told the margins were clear. I have been vigilant about having skin checks by dermatologists and although I have had several basal cell cancers removed, I have not had any more melanomas. Earlier today I spoke with my nurse navigator who gave the impression that waiting should be fine. Then late this afternoon she called after speaking with the surgeon and she seemed to have changed her tune and thinks I should have the surgery Monday. That just seems too early! A big part of the problem is that the surgeon's schedule is pretty full for the next month.

I do have the path report from the biopsy. The tumor is super small: 6mm. I am ER and PR positive. I am having a Pet Scan tomorrow. On Friday the surgeon will call again

Update (Oct. 28)...just returned from Seattle Cancer Care Alliance where I met with a breast cancer surgeon, oncologist and radiologist. Am now scheduled for a lumpectomy middle of Nov; follow ups with radiation and "the pills" (can't remember the names! Lol!) Not sure I'll really need the radiation, but will decide after the surgery. Am so thankful to people on this site for urging me to wait and get a second opinion!

Comments

  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited October 2018

    I pushed back and got a second opinion. It made me more confident in my decisions. You are in the hardest part. It will get better once you have your treatment plan in place.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited October 2018

    So sorry! This is the worst part, but I agree you have time to get a second opinion. Things to do:

    Breathe.

    Ask for copies of your ultrasound, mammogram and biopsy reports.

    Get a copy of the book "Navigating Breast Cancer" by Lillie Shockney for clear, practical advice.

    Come back here as much as you like to ask questions. A lot depends on ER and HER status, your age and your family history. We are definitely here to help.

    And yes, I'd get that second opinion.

  • dakrock
    dakrock Member Posts: 99
    edited October 2018

    So sorry this has happened.   I would definitely get a second opinion.   I waited 2 months before I went ahead with the surgery.   They put me on Letrozole immediately in December when I had the biopsy but my surgery wasn't until February 23, 2018.   I had to get my head in a good spot.  Otherwise I was a walking zombie.   When it came time for the surgery I was ready.   Don't let anyone hurry you.  You have to be comfortable with your decisions.    Good luck  and keep us posted.

  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited October 2018

    There are some great threads in here about all aspects of treatment. It's a great resource for info. You will get worst case stories but also good news. My husband started asking me if I was going to cancer college because I did a lot of research.

  • wallycat
    wallycat Member Posts: 3,227
    edited October 2018

    Keeshondmom, I'm so sorry you are joining us. Your post is sparse with details...ILC because of a biopsy? Or have you had other type of surgery? Your doctor "felt" cancer...take that with a grain of salt, especially ILC, which grows flat and thin.

    Deep breath. Another. If you wanted a second opinion, you have plenty of time for it. I'm not sure why you think otherwise, but there is always time for second opinions; even third opinions. Never believe a doctor who thinks they can detect cancer by touch. Some even get it wrong looking at imaging. My radiologist refused to acknowledge I had cancer looking at my MRI. She was wrong. I had another doctor convinced that because my cancer didn't show up on ultrasound, I didn't have it. **shaking my head**

    Find doctors you trust and are comfortable with. Give yourself time to absorb the information. Have someone go with you to ensure your facts are straight (or record your appointment so you can play it back at home). ILC tends to be slower growing so if someone is telling you that you have to rush to a decision, that isn't the case majority of the time.

    I wish you well and I hope you can find a doc who can put your mind at ease, such as a cancer diagnosis offers.

  • Lula73
    Lula73 Member Posts: 1,824
    edited October 2018

    What Wallycat said...

  • beach2beach
    beach2beach Member Posts: 996
    edited October 2018

    I ditto Wallycat. Your lymph nodes could just be larger than normal but nothing ominous and completely normal for you also. For someone to feel it and say they think its cancer is a bit premature. Breast cancer and lymph node involvement is not always a given. If you are a unsure in any way with the information you are being given, or just feel uneasy with the surgeons manner, I'd get a second opinion too.

  • keeshondmom
    keeshondmom Member Posts: 18
    edited October 2018

    Thanks so much for your input! Having Cat Scan tomorrow; surgery postponed as per surgeon's office when Pet Scan revealed no lymph node involvement. Have appt at Seattle Cancer Center at end of month for second opinion. So thankful for the responses on this forum urging me to take my time and get a second opinion

  • dakrock
    dakrock Member Posts: 99
    edited October 2018

    Good news that you postponed and Pet Scan showed no lymph node involvement.   Remember you can always get second opinions.  You are in no hurry to rush and begin anything until you are comfortable with your decisions.   Keep us posted.

  • ReggieH
    ReggieH Member Posts: 21
    edited October 2018

    So glad that you were able to slow things down so that you could get better control of the process. And getting a second opinion will help you get to the decision that’s right for YOU.It’s way too easy to follow what the doctors tell you because you’re confused and scared and totally out of your depth.

  • keeshondmom
    keeshondmom Member Posts: 18
    edited November 2018

    Update Nov 28: Had lumpectomy Nov. 19 with removal of 4 lymph nodes. Just received amazing news of no cancer in lymph nodes or margins! Yay, yay, yay! But...now am a little unsure about radiation. I know that's the "gold standard" for treatment, but....with clear nodes (four) and clear margins...if anyone sees this post and can comment, I would really appreciate it. Meeting with surgeon in two days. I'm sure she will want me to have it, but....Would love to hear opinions ...

  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited November 2018

    Congrats on clear nodes and margins!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    All I know is that lumpectomy with radiation seems to give the same % of protection as BMX with no radiation. Radiation wasn't hard at all for me. It was simply tedious: 15" a day, 5 days a week, for six weeks. Compared to 5 months of chemo, 6 more weeks for just a few min a day was simple.

    My philosophy was to do everything offered to me from modern medicine to give me the best change to kick ass on cancer, but I had 6 positive nodes and was considered high risk. ILC also has a tendency to be multifocal and grow in both breasts, so a year after radiation I had a BMX with reconstruction.

    I also had dense breasts, which hid the problem from mammos for 5 years. My scans always reported "all clear", which apparently wasn't true.

    You can refuse any treatment, but you should talk to your oncologist seriously about all treatment plans for you, and get her take on why radiation is recommended. As I said, it was a non-event.

    Claire in AZ

  • keeshondmom
    keeshondmom Member Posts: 18
    edited December 2018

    Thanks! I am going to go through with the radiation...guess I should hedge my bets! I know I was so lucky this was caught so early but so bummed at all the pain I'm now having 3 (maybe 4?) weeks post surgery at the lymph node excision sites. Just seems weird that I'm feeling worse instead of better. Have talked with nurses twice and told it sounds "normal". Am taking Ibuprofen to take the edge off; have never found Tylenol to be very effective. A couple nights have had to take hydrocodone which I hate doing but...

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