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Well this sucks.

A few days ago I posted this in another thread:

“I'm just feeling f'ing ripped off. My tumor was 2.1 cm so barely into stage 2, with clean margins and no lymph node involvement. I took the nuclear option of BMX followed by chemo, because I was only 40 and wanted to minimize risk. I have taken tamoxifen every day. After 5 years my onc said the risk of recurrence was very low. I had all those stats with the happy 5 year survival rates. My onc never even sent me for imaging or routine blood tests because I'd had a BMX what was there to image? I adopted a baby at 45. I felt safe.

Now I've got a toddler and a lump under my arm and I'm reading that my risk didn't really go down after five years, it actually went up because I was hr/pr+ and her-. What the hell why weren't they at least giving me ultrasounds all this time? The lump could be something else, I've been having issues with my implants, but I'd really like to have been watched more carefully. I just applied for life insurance last month because I'm finally eligible again and I'm scared I'll be denied.”

I just had an ultrasound, and the doctor thinks it's nothing good. “There is a mass" she said. I'll go in for a PET scan and biopsy next week, hopefully Monday. I'm really pissed off.

She did say it looks like it's about 1.5 cm, and didn't look like something she would expect to be stage 4. If she had to guess it would be a local recurrence. I'm still pissed, but that's not as bad as it could be. I'll be able to get through the weekend without freaking out too much.

God damn it. (If you are offended by foul language you might want to block me.)

Comments

  • kmom57
    kmom57 Member Posts: 153
    edited February 2021

    Nola, sometimes curse words are appropriate. This sounds like one of those times. I’m sorry you are going through this.

  • NotAsCalmAsILook
    NotAsCalmAsILook Member Posts: 133
    edited February 2021

    I believe you could use stronger words. This fucking sucks! Cancer is a bitch.

  • dani444
    dani444 Member Posts: 215
    edited February 2021

    I agree with NotAsCalmAsILook cancer is a bitch! I am sorry you are going through this. I hope you get your answers soon. Waiting is also a bitch as we all know. Wishing you some moments of peace as you go through testing and wait for results. And when you aren’t feeling the peace, use all the curse words!!

  • wallycat
    wallycat Member Posts: 1,185
    edited February 2021

    I'm so very sorry you are dealing with this.

    Just remember that her thinking something is not equivalent to it actually BEING anything. I was told my imaging was absolutely NOT cancer....there you go.

    Sending good thoughts. Please update us.

  • 2019whatayear
    2019whatayear Member Posts: 463
    edited February 2021

    yes that is some shit. I hope it turns out to be benign. Are you still seeing the original oncologist? I'm pissed on your behalf.

  • LivinLife
    LivinLife Member Posts: 301
    edited February 2021

    WOW!!!! What to say.....? Absolutely get you really being upset..... I hope this turns out benign for you though it doesn't sounds like the radiologist expects that.... I realize even good oncs are human and don't have crystal balls though I'd probably want to go with a different onc if you're not already planning on that..... At the same time the onc was likely looking at real stats and unfortunately you may fall in that very small percent..... Please keep us posted as you get more info...... Gentle hugs sent....

  • nola70115
    nola70115 Member Posts: 61
    edited February 2021

    Thanks everyone. People here are always so kind. I had my biopsy with the same doctor I saw for the ultrasound last week. The onco did not order a PET scan yet so I guess they are waiting until the biopsy is back. I rather wish they'd just order everything at once. You know I'm going to have to get a PET scan.

    The radiologist says that the mass looks like breast cancer. Except I don't have breasts. It's under my arm, but not exactly in the axilla, it's lower and according to the radiologist does not look like a lymph node. Her guess, if she had to make one, would be that I had some stray breast tissue left over after the mastectomy, because my natural breasts were very large so it would be easy to miss some tissue under my arms. If that's the case that would be GREAT because even if it's annoying as hell that I have a recurrence after doing everything I could to prevent one, it would only be a local recurrence and not something that has spread. I have no idea what the treatment protocol would be then. I can just imagine how the insurance company is going to respond if they get a request for a second bilateral mastectomy. I would imagine they'd look at this as a lumpectomy, and then recommend radiation. I have implants though so I don't know if they can radiate me anyway or if they need to get rid of the implant first. I'm kind of sick of feeling like I've got a silicone chicken cutlet shoved under my skin all the time, and wouldn't mind being rid of the implants. I want them to take a really close look for any other leftover breast tissue this time.

    I just don't know what to expect as far as chemotherapy. They'll do a new dna analysis of the tumor and work up the oncotype. I'm not feeling all that motivated to go through chemo again if it didn't work to prevent a recurrence the last time. Of course who is to say that if I hadn't had chemo I might have had a recurrence years ago. I just would rather not put my family through it all over.

    That's all assuming that this is just a local recurrence though, because if it's not I imagine the chemo will be stronger and harder than it was the last time and that will suck. I had Taxotere/Cytoxan, and it wasn't terrible for the treatment period but the chemo brain lasted a really long time and made it very hard for me to work. I have to have a conversation with my boss soon. I don't want to give up having an income but I don't know how long I can expect them to cover me if I can't work. I hope I can work through the whole thing, but it's hard to tell. My job is demanding and I have to be able to think and talk like I know what I'm talking about. If I'm all chemo-brained that could be bad for my clients. Ugh.

  • jwoo
    jwoo Member Posts: 931
    edited February 2021

    keeping all of my fingers, toes, eyes, etc crossed for you that it is a benign body.

  • debal
    debal Member Posts: 600
    edited February 2021

    nola, sorry you are back on this rollarcoaster. Its impossible to get every little last bit of breast tissue. Like you said there is breast tissue under our arms and heck all the way up to our clavicles. Holding out hope your results are benign.

  • nola70115
    nola70115 Member Posts: 61
    edited February 2021

    A couple months ago a tv show I was watching had a character find a lump in her armpit that turned out to be breast tissue. It actually took the wind out of me because it had not occurred to me before then that even after the BMX I could still have breast tissue I didn't even know about.

  • debal
    debal Member Posts: 600
    edited February 2021

    yes Nola. My breast tumor was a lump directly under my armpit not in the fatty part of my breast. Now I do a pretty good exam feeling for new bumps and lumps especially along incision line. Usually at night if I can't sleep. Things settled after my mastectomy and fat grafting so even 3 years later I still notice subtle changes. I really hope you receive good news

  • nola70115
    nola70115 Member Posts: 61
    edited February 2021

    So my biopsy came back showing IDC, with 91% ER+ and 81% PR+. No sign of lymphatic tissue. This is just breast tissue, in my armpit, seven years after a bilateral mastectomy. I'm so MAD! I took the full nuclear option when I had my first diagnosis because I did not want to risk a recurrence. People kept telling me a lumpectomy was just as good for survival rates and I replied that survival wasn't the only issue, I did not want to have to go through treatment a second time. I've taken tamoxifen religiously for seven years, and I went through chemo which really f'ed with my brain and aged me about ten years in 12 weeks.

    Excuse my language, but what the fucking fuck?

    Now waiting for callback from MO and for an appointment time with a surgeon. The surgeon I used before is the chair of the department but I'm mad at him for leaving boobs in my armpits so I think I'd prefer a woman surgeon this time.

    I have a wonderful 17 year old daughter with multiple disabilities, and a beautiful sunny two year old toddler. I have to be their mom. I do not want to do this again.

  • moth
    moth Member Posts: 3,293
    edited February 2021

    Ugh, sorry you're going through this again nola!

    breast tissue does extend into the armpit. It's called the tail of spence. How frustrating that they didn't get it all but I understand from surgeons that it's not always easy to see the lines separating the tail of Spence from other tissue...harder than when you get to the chest wall for example. The fascia there are obvious but in the axilla it's harder.

    Honestly though, so long as it's nowhere else, this is still decent news, kwim?. Treat it and kick it to the curb again. Best wishes

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited February 2021

    Nola, I had a somewhat similar trajectory and experience in the sense that I have been continually floored and in disbelief by what my cancer is capable of. I did all the things that are supposed to work, over and over again, and then they just... don't. What the fucking fuck indeed. I feel your frustration.

    You have every right and reason to be angry. We want to live. We go through hell over and over again because doctors hold out that hope and promise. I never thought I would have been able to do all the things I have done. And yes, I'm not the same as I used to be - my body is worse off for it and it sucks - but I'm still here, and I still want to be here.

    These are a few things I learned after my local/regional recurrence:

    1. If you haven't already done so, get an opinion from an NCI designated cancer center. If possible transfer your care to one you feel good about.

    2. Insist on a PET scan before any surgery. If the PET scan is clear, you should also ask for a breast/chest wall MRI prior to any local surgeries.

    3. Ask for FoundationOne or similar genetic testing on the tumor specimen. This can help determine whether you are eligible for clinical trials, immunotherapy, etc. At this point this would be done instead of Oncotype testing, and gives much more information.

    I hope that helps. I find that dealing with the practical stuff at least makes me feel like I'm making some progress, and taking control of what I can in a bad situation. Hang in there. Feel free to PM me if you have any questions or want to know more about anything. ((Hugs))

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited February 2021

    Also, I feel that this should be said for the sake of others who might be reading along: it is not possible to remove *all* the breast tissue during a mastectomy. A mastectomy can only remove *most* of your breast tissue.

    This is a very common misconception among patients though, and doctors should really be clearer about this up front. It is their job to inform us about the procedures we undergo.

  • LivinLife
    LivinLife Member Posts: 301
    edited February 2021

    Geez Nola!!!!!! Though it really didn't sound good from what you posted from the beginning... The kids too....I hear your worry and sadness with and about them too..... it's a lot you're now back at the beginning of....... My OBGYN told me "it's not like breast tissue is blue and they can go in and remove all the blue tissue...." - dumb comment though he is a kind man and I knew what he meant.... I'm sure those are difficult kinds of things to think about now... I just hear your anger and get the BMX decision over lumpectomy in hopes you wouldn't have to deal with this again - and here you are..... buttonsmachine gave you some great practical steps - I hop you'll look those over and see which ones make sense for you to follow through on....

  • elainetherese
    elainetherese Member Posts: 1,625
    edited February 2021

    I am so sorry. Yes, it sucks that you will have to go through treatment again. This is small, small consolation but....you found the lump and followed up on it, which was the best you could do under the circumstances. I'm really really really hoping that this is just a localized recurrence, but I'd also follow buttonmachine's advice. Second time around, it's time to get super-serious and ask for a PET and the best people and information you can get.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited February 2021

    I am also hoping that this is a local/regional recurrence, because then it can be treated with curative intent.

    The main reason for getting a PET scan at this juncture is mostly because you don't want to hit the cancer hard with the "curative intent" treatments if you are metastatic already. It may sound counterintuitive, but treating a local/regional recurrence often involves harsher treatments on the front end - similar to what we went through at initial diagnosis, but this time with the bigger guns of surgery, chemo, radiation, and hormone therapy. On the other hand, a metastatic recurrence would usually involve starting out with medicines that will give you the best quality of life, and riding those for as long as possible before resorting to harsher treatments. For ER/PR+ patients, a change in hormone medicine and a CDK4/6 inhibitor like Ibrance is a common place to start. So the PET scan is an important tool mostly just to keep YOU safe from doing unhelpful treatments.

    Please keep us posted Nola.

  • NotAsCalmAsILook
    NotAsCalmAsILook Member Posts: 133
    edited February 2021

    Nola - nothing I can say will make you feel better. But let me show you what I bought from Etsy that makes me feel better in the mornings .... image

  • nola70115
    nola70115 Member Posts: 61
    edited February 2021

    Thank you all. That mug is great. I’ve got an appt with the surgeon on the 18th and the PET scan on the 22nd. This is obvs not the order I want these two appts to be in so I called radiology and asked to be put on a wait list for any cancellations. Fortunately I live close to the hospital.

    We don’t have a NCI hospital in my state (Louisiana) but the regional one (Ochsner) is very good. I will talk to the MO once all the tests are back about whether I’d be wise to go to MD Anderson in Houston. The difference time wise is between one being five minutes from my house and the other being six hours, so there would have to be a really good reason for me to switch over.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited February 2021

    Nola, I think if you get a second opinion at MD Anderson they offer a situation where they coordinate with your local MO and they are still involved in your care, without you actually having to travel there all the time. It might be a good option to explore. (I did get a second opinion there a few years ago and they offered this, but I ended up transferring all my care to another NCI center closer to home for practical reasons.)

    I'm glad things are moving along and you have some appointments scheduled. Hang in there.

    That mug is great.

  • LivinLife
    LivinLife Member Posts: 301
    edited February 2021

    Such a good idea buttonsmachine! I know several people in my area who traveled quite a distance for their initial consults, etc. and actually do treatment locally.... I would have done the same thing though underwent bilateral mastectomy in order to avoid radiation... Surgery was 4 hours from home. I would've done rads locally if I was able to undergo that (I wasn't).....chemo too though mine was DCIS so unnecessary....

  • nola70115
    nola70115 Member Posts: 61
    edited February 2021

    I put in an appointment request with MD Anderson and they are supposed to call me within 2 days. I assume I can send them my biopsy and pet scan reports from here and then they tell me if I need to go there in person for more testing? I don't know how a second opinion works. I'm sure they will tell me, or if needed a doctor friend said she could contact them.

    I'm scheduled to see the surgeon here tomorrow, and my pet scan is Monday. I don't know why I'm seeing the surgeon first, other than there being a backlog of patients waiting for pet scans. I don't like waiting this long for the scan.

  • nutfarmer
    nutfarmer Member Posts: 11
    edited March 2021

    Dear Nola,

    I have a similar situation. I was diagnosed almost 5 years ago. Had bilateral mastectomy then chemo then tamoxifen until they confirmed chemo put me into menopause changed to arimidex. Then reconstruction. I have had ultrasounds since my reconstruction and there have been areas of concern on the reconstructed breast for the past 3 years I have had multiple MRIs that were not conclusive multiple biopsies that were not conclusive. Finally a year ago the biopsies came back enlarged lymph nodes 2 different sites so we have been following up with more ultrasounds every 6 mths. During this time I had symptoms of uterine cancer biopsy came back inconclusive so hysterectomy was done.

    Fast forward yesterday I went for breast ultrasound followup and one of the spots has changed looks like cancer. I did have my Covid vaccine so now they are saying well maybe that is causing the change but my vaccine was over 4 weeks ago. Anyway, now we are waiting to see next step. My oncologist sucks I cant stand him or his office. I have an HMO so am limited and when I asked to change drs I was told NO. He has not seen me since Covid started even though he received a report regarding the uterine cancer symptoms. I will talk to the radiologist and possible go straight to biopsy. We will pay out of pocket. I will also try to talk to my primary dr to see if he can refer to someone else I feel like this oncology office is negligent. Arimidex can cause uterine cancer and even after they knew I had symptoms they did not change my meds. I stopped taking the medication all together last August due to all the side effects now of course I am feeling very stupid. I should have continued the tamoxifen.

    I have had 2 ear surgeries since the hysterectomy and just wanted to feel normal for a little while. It has been a roller coaster ride for sure.

    I wish you luck with everything. I feel your pain and understand your frustration. Cancer sucks

  • nola70115
    nola70115 Member Posts: 61
    edited March 2021

    I hear you nutfarmer. It’s so disappointing. I haven’t had any screens except for talking to the MO and him feeling my lymph nodes, until I found a lump, I missed a year because of covid too. I do like the MO though and had no trouble getting approved to see MD Anderson for a second opinion, so I’m lucky in that sense at least. I’d been asking the MO about switching from tamoxifen to an AI for years, because only 2 or 3 periods in the six years since chemo. The tests still showed me as premenopausal though, so they kept me on tamoxifen. Who knows if any of it matters?

    I’m about to get fired from my job now too, so depression is a real problem. Thank god my insurance is through my husband. I don’t think I’ll be able to get another job and it’s a real blow to my self esteem to not have a career after working so long for it. I’m really an expert in my field, but I need admin support and can’t work alone. It’s too much to try to figure it all out at once

  • LivinLife
    LivinLife Member Posts: 301
    edited March 2021

    Nola I'm glad you're going for a second opinion. sorry you are dealing with all of this! Our situations are totally different though I wanted to respond on sending your biopsy, etc. I had a second opinion 4 hours away. They dealt directly with my local hospital where my imaging and biopsy was done. All of these things were coordinated between the two medical centers and sent to my second opinion where I ultimately had my BMX. Best to you!

    Best to you too nutfarmer!!!

    Please let us know how things go- both of you....

  • KBeee
    KBeee Member Posts: 695
    edited April 2021

    I am sorry you're dealing with this recurrence. How are things going now? Do you have more definitive treatment plans?