I can't believe it's back.

Emily2008
Emily2008 Member Posts: 605

Found out today that the cancer is back. I don't know the grade or hormone receptor status or anything yet. My doctor will find out in the next couple of days and we'll begin formulating a plan with my oncologist.

I just can't believe that after a double mx, chemo, tamoxifen, no node involvement, that it came back,

What are the odds? Are they like 1%? I am the 1%???

Unreal. I'm thankful I have these boards, just hoped I wouldn't need them anymore.

«1

Comments

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited October 2016

    Sorry you've joined us as stage 4. The odds are 30% if that makes you feel any better. Or is yours a new primary? If so then you wouldn't be stage 4 but probably just as angry.

  • sheyma
    sheyma Member Posts: 9
    edited October 2016

    Emily2008 I'm so sorry because you're here. It's strange to see metastasis in someone like you. Were there lymphovascular invasion and / or necrosis in your first diagnosis? What was the tumor size? Was the tumor unifocal or multifocal?

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2016

    Emily, in reading your other thread, my understanding is that you found a lump in your breast. So this may be a localized (restricted to the breast area) recurrence, or it may be a new primary breast cancer. I haven't seen anything in any of your posts (unless I've missed something) suggesting that this is a distance recurrence, i.e. mets. I hope that this is in fact a localized breast cancer, and that the others here are jumping the gun when talking about mets. Nevertheless, I understand your frustration and am so sorry that you are dealing with this.

    As for the odds of this happening, if it is a localized recurrence, the odds after a MX are pretty low - probably in the range of 1% - 2%, unless you had close surgical margins after your MX, which could take the risk up considerably. If however this is a new primary cancer (which is quite likely after this amount of time), while for most women the risk after a BMX is about 1% - 2%, in your case, because you are BRCA2 positive, I believe that after a BMX your risk to develop a new primary cancer was probably more in the range of 5% - 7%. Others who are BRCA2 positive might have a better idea about this.

    Good luck with your discussions with your oncologist. And hoping that this turns out to be an early stage, easily treatable new primary. That would be the best finding, given that this has happened.

  • Emily2008
    Emily2008 Member Posts: 605
    edited October 2016

    Thanks, ladies. No, I'm not stage 4 at this point. It's a recurrence in my breast, and we know nothing else at this point, including grade and details of the tumor.

    I'm praying it's not metastasized, but we won't know til I get the scans.

    And yes, I'm angry and in disbelief.

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2016

    Emily2008, sorry to hear your cancer is back. Sounds like you did everything to get rid of it. Hopeful this time they will get it completely out. I too am terrified that my cancer is in my spine. I have an MRI friday. I hate this disease no one seems to understand the threat we live with.

  • Nanpop
    Nanpop Member Posts: 75
    edited October 2016

    I am so sorry. I am sending you positive energy. If you had a bilateral mx, was tumor growing from the skin, implant, or node? Have you been on any of the newer hormonal drugs?

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2016

    Nanpop, a BMX can never remove all the breast tissue. I've read that generally about 3% of breast tissue remains, although I don't know how accurate this is. Cells of breast tissue may remain against the chest wall, against the skin, around the bottom or sides of the breast, etc.. This is why a recurrence or the development of a new primary breast cancer is possible even after a BMX. For most women, the risk of this happening is quite low, but the risk will be higher under certain circumstances such as close surgical margins or for those who have a higher than average breast cancer due to genetics (eg. BRCA, etc.).

  • Nanpop
    Nanpop Member Posts: 75
    edited October 2016

    Beesie

    This is all new to me. Thank you for replying. If you have node removal and inserts, how do you check yourself to see if anything is growing?

  • Beesie
    Beesie Member Posts: 12,240
    edited November 2016

    Nanpop, well, here's the good news about implants. Assuming that they are put in behind the chest muscle, as most are, they push the chest wall right up against the chest. So the area where a recurrence or new primary is most likely to develop, either against the chest wall or against the skin, is all just right below the surface of the skin. I had a single MX, so I have one implant reconstructed breast and one natural breast. My reconstructed breast is very firm and smooth - I would notice the development of even the tiniest nodule below the skin. My natural breast is lumpy and bumpy and much more difficult to check for lumps. So generally a recurrence or new primary in an implant reconstructed breast is quite easy to find.

  • Emily2008
    Emily2008 Member Posts: 605
    edited November 2016

    Wow, Beesie, I remember you from my last go-round! So nice to see you again, though the circumstances pretty much stink.

    I hadn't heard the 5-7% chance of recurrence in BRCA patients. Makes sense.

    Nanpop, I found my lump while doing a breast self-exam. You can still feel a lot if you palpate deeply, all around the breast and in the armpit. So important for post-mastectomy women to continue their self-exams!

  • Emily2008
    Emily2008 Member Posts: 605
    edited November 2016

    Meow13, I can understand your fear. I will pray that Friday is a terrific day for you!


  • KBeee
    KBeee Member Posts: 5,109
    edited November 2016

    Emily, I hope you get more info soon. I also had a local recurrence after BMX, chemo, and tamoxifen. I had huge clear margins and had recurrences in 2 areas. I have all kinds of theories, but the why is unimportant. What's important is to focus on you. Bring someone to take notes at appointments, and ask lots of questions.

    Keep us posted

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    Hi Emily

    It can and does happen unfortunately.

    Im so sorry it has happened to you again.

    It is not an easy thing to deal with. And you are inbetween(hopefully) not new to it but not metastised either. It is a mental battle but you can do this. I dont have that braca gene..but I had a recurrenence a year out in left mast. Side and then again in 2012 in right mast. Side. I did originally have 1 node pos. But that is all. I did have chemo and then the rads after 1st recurrence. I am sending healing thoughts and prayers your way.

    Ps . For Barb..I remember you told me you had some spread to your clavicle and or neck area. I had been puzzled as to why you thought you were stage 4. If these are the only areas of spread/recurrence then I believe you are actually stage 3 for regional not stage 4 which is for distant organs or bones. This thread is for recurrence of any kind I believe..not just for metastatic spread. :)

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Astrid, my oncologists says I'm stage 4. Where I recurred was not in breast tissue. I also had a large tumour deep in my chest wall. A local recurrence is within the breast. I have no breasts and my tumour was deep.

  • Jiffrig
    Jiffrig Member Posts: 232
    edited November 2016

    Sorry for your new diagonosis. I am discussing rads now with RO and she is telling me how radiation to chest wall keeps reoccurrences from happening with bmx. Unless nodes are involved they typically don't do rads. I guess I will do the chest wall rads even though it might mess up my recon a bit. Maybe a blessing in disguise I have one node

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    Hi Jiffrig. Just to try and encourage you a bit..

    I had rads on left pre implant and they still managed to reconstruct successfully. On the right I recurred a year post implant so had rads with the silicone there. No worries!! Went well. I did use fresh aloe vera on it from the 1st session on..immediately after in the change rooms. They grew the plants at my centre but I know patuents who bought some plants and brought a refridgerated piece with them every time. :D best of luck!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    oh Barb I am so sorry you have this recurrence! I hope you are managing well. Have you finished treatments? I am so interested in your onc's dx for you. I have never heard of chest wall being included in stage 4. I find that scary.

    I looked at a few sites for staging explanations and in different countries as well..and it alawys says chest wall or collar bone area is stage 111B ormaybe 3c? Very horrible no matter what but I like to know things precisely I guess.

    Below is a link to the staging analysis on this website. I hope it is right. Even chest wall would be 3. Only 4 if it goes to lungs there which I hope it never does!! Why does it matter? Well if it was me..I know which stage I would prefer and which would give me hope for longest time with my family.I hope you think so too!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Astrid, I had 6 weeks of rads and am on Arimidex "until it stops working and we use another chemo" (as per my onc). He's hoping I'll get as much as a year out of Arimidex. I've been on it for 7 months so far....

    I saw this on the bco first page that may explain it better:

    Locally advanced breast cancer is breast cancer that has spread beyond the breast to nearby tissues, such as the skin or the chest wall. Both locally advanced breast cancer and metastatic breast cancer are considered advanced-stage disease.

    I will be on treatment for the rest of my life so no, my treatment isn't over. Right now I'm waiting to get my pacemaker switched out to an MRI-compliant one so they can see if I have mets in my brain and if the node in my lung is cancerous. The CT was suspicious.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Ah, I see your confusion. The link you gave for IIIC says "or spread to the chest wall". That is on initial diagnosis, not as a recurrence.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    wishing you the longest best journey with your help Barb.

  • KBeee
    KBeee Member Posts: 5,109
    edited November 2016

    Emily, have you met with oncologist yet

  • Emily2008
    Emily2008 Member Posts: 605
    edited November 2016

    No, my appointment is tomorrow at 10:30 am. Thanks for checking on me.

    My mind is swimming with things right now. My BS still hadn't called me today with the detailed path report, so I called the onc's office to see if they had received it. They had it, and the front desk woman told me it says the tumor is IDC, ER/PR pos, Her2 neg, and grade 1. This is just like my first tumor. While I want to be relieved that it's not more aggressive, I just can't figure out how it recurred. I know the statistics, but I'm just so puzzled.

    It's got me thinking that maybe I need to go to a major cancer treatment center like CTCA in Philly so they can evaluate everything in light of my BRCA status. I trust my onc and BS, but what if there's something they're overlooking or minimizing and that's why it came back?? What's to say that it won't come back again if I follow their recommendations?

    I just don't know what to think right now.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    Hi again Emily. I really inderstand your anxiousness. Hang in there and yes..a specialist cancer hospital is always a great idea.

    Please understand that it is most likely left over micromets that have been missed and grown. When you have a double mast. You dont get radiation necessarily unless certain amount of node involvement. You got chemo but although its great at ridding most of the body of micromets it isnt necessaroly the greatest at doung that in the breast area. I know this because my onc. Told me after I recurred in mast. Site. I had the same pathology as you at the time. As Beesie wrote, it can recur in the skin left over in our mastectomies. Not always a new primary. Often just timy mets missed after original surgery.. and as I mentioned..without radiation more likely unfortunately.

    Thinking of you and wishing the best for you.


  • Emily2008
    Emily2008 Member Posts: 605
    edited November 2016

    Astrid, that makes a lot of sense. I didn't know that about chemo not working as well in the breast area.

    I feel more calm tonight. I had a good cry, talked with a friend, and am looking forward to getting some information at my appt tomorrow.

    Thanks for the encouragement!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    we are right here with you emily.

    you can do this. :-)

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2016

    Emily, don't BRCA2 mutations confer an increased risk risk of a second breast cancer? That could be at least a contributing factor (for what it's worth).

  • KBeee
    KBeee Member Posts: 5,109
    edited November 2016

    It only takes a couple cells to grow into a new tumor. I was in teh same boat as you. Hoping your appointment goes well. Ask around to anyone local who you know that's had any type of cancer, and ask where they'd recommend for a second opinion. Another look at things is always a good idea.

  • Emily2008
    Emily2008 Member Posts: 605
    edited November 2016

    Okay, I'm home from the appointment. Phew, that was intense!

    Long story short, I will have bone scan, CT, and breast MRI to see if there is any other cancer in the breast and/or in the nodes. I had 5 nodes removed in 2008, so my onc says there's a possibility I'd need an ALD, but since it's a big surgery, if the breast surgeon doesn't think it's necessary based on scans and physical exams, we won't do it. Instead, wide-margin excision of the tumor followed by targeted radiation to the breast and underarm. He says there's a 10-11% statistical probability of metastases, which seems high to me, considering how unlucky my odds have been thus far, haha!

    He will take all my reports and case to a couple of tumor boards and confer with his colleagues at Dana-Farber. I'm an unusual case in that I'm BRCA pos and have a recurrence, so I suppose oncologists like to study people like me (doubly unlucky, I suppose). :)

    He said he would prescribe some AIs as follow up treatment. I can't think about that right now though. One thing at a time.

    Oh, this tumor is similar to the last in terms of ER/PR and Her2 status, but the Ki67 is 29 and in the first tumor is was 5. My onc said it's not a completely useful piece of information, and from my reading, some pathologists and oncologists don't even report this. But it is a measure of cell proliferation, and apparently anything over 20/21 is "high", which is what my path report said, so not sure why it doesn't factor in too much. Although maybe that's what he was thinking of when he said he couldn't rule out chemo?? Not sure.





  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    Hi emily

    Thankyou for the comprehensive report. I love that you have a team on board now to help you win this battle. I never heard of 'k'(whatsits)before. Good to learn new info.

    A plan is good.. gives structure around the stress eh? Lets hope and pray for no node involvement or anything else outside the breast. Radiation is good. I also think this is a life situation where you want to be a bit 'special" and stand out. :D The more experts on your team the better!! Yes that does sound a high percentage..must be the braca gene. You are doing everything right though and that is important.

Categories