Biopsy today after 13 years NED help!

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  • wallan
    wallan Member Posts: 1,275
    edited January 2017

    Hey guys:

    Do you think they take into account your cancer history when they plan your treatment for a new primary? After so many years NED, do you think its treated like a brand new cancer? Because it is so small, I agree treatment can be surgery maybe and hormone therapy.

    But since I had a large tumor and lymph node positive last time, I wonder if they will consider more aggressive treatment. I guess I just have to wait and see.

    I told my boss at work that I need treatment for early stage BC, (he knows nothing of my history) and he was exceptionally supportive. Its just deciding if I need a longer term medical leave because this affects income. He is asking me what I want to do. Right now, I am off work because I am a basketcase. But, its not a formal "medical leave" as of yet. I am just writing my thoughts out loud and I know no one can answer this. Its helpful just to get off my chest to people who understand. I just need to wait to see treatment plan and hold my boss at bay.

  • sheila888
    sheila888 Member Posts: 25,634
    edited January 2017

    Hi wallan....the size is very small I hope you don't need chemo.......

    Sending big hugs and hoping your treatment plan will be decided soon.

    With my own experience tumor was 1.3 cm because of those micro cells shown in my sentinel lymph node My dr decided to give me chemo.

    Good luck to you in any way I know how you're feeling

  • wallan
    wallan Member Posts: 1,275
    edited January 2017

    Hey Sheila:

    Thanks .. it is small. I just got a call from the surgeons office - 1:30 PM on Tuesday is the consultation. 6 AM is the MRI.

    Things are moving. You are right. I feel less anxious when things are happening.

    I did ask why I need an MRI and I was told there is more than one lesion that may or may not be cancer. So they need to know if its multifocal disease. In my mind, I don't care. I am getting a mastectomy.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2017

    wallen, the MRI may show other areas but when you get the mastectomy you will know for sure. I had a suspicious area as well as the 2 tumors. After the mx pathology the area was normal tissue. I had quite a bit of relief. If I had a biopsy on the suspicious area I am not sure I would have been convinced there was no cancer. I would have felt I absolutely would need radiation after the lumpectomies.

    The mastectomy took a huge emotional toll on me but after my fabulous DIEP that melted away. I remember a famous celebrity, Joan Rivers, saying she wanted to be buried with her plastic surgeon. I can understand now, I really feel like mine fixed my body, I feel totally normal now.

  • wallan
    wallan Member Posts: 1,275
    edited January 2017

    Hi Meow13:

    Thanks for sharing this. I am wondering about the psychological toll of a mastectomy on me too. I already had one on Right side last time. So I am lopsided. Surprisingly to me, I do feel very subconscious when wearing a bathing suit and won't get wet in public. Its irrational I know, but I am self-conscious. I do have a swimming prosthesis, but its a different size a bit and shape. I thought of reconstruction a hundred times, but never took the plunge. I convinced myself I am alive and that is what counts. Why have more pain and surgery I thought.

    But this time, with another mastectomy, I am thinking reconstruction. Its the perfect opportunity. I do wonder if it makes a difference in your body image. I mean really, its just two lumps on your body right? But your clothes fit and no prosthesis. I have never talked with a woman who had reconstruction except for one woman many years ago. She was unhappy because they reconstructed one breast lower than her natural breast on the other side and it looked horrible. This scared me off too from any reconstruction.

    You say you are happy and look natural? That is pretty awesome. I do know medically speaking that mastectomy is the only way I will go. I can't fathom wondering if the lumps they don't remove with a lumpectomy will ever turn malignant. Or, if any new malignancies will surface some time. I sort of wish I had had a double mastectomy last time. Hindsight is 20/20 I guess.

    How long was your recovery from the surgery?


    wallan


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    Wallen - as you say, the perfect time. Talk to a plastic surgeon about reconstruction sooner rather than later. You will be in a unique situation working to expand a side that has been sitting for 13 years in addition to the current surgery. Lots to discuss.

    I had TE's placed when I had my BMX and exchange 7 months later. Partly my choice to have slow fills and partly the PS wanting to let everything sit once the fills were done. I had help for the first week after BMX w/TEs placed, but I was off heavy duty drugs by the end of that week and on my own. It takes some time to build back range of motion, but most docs won't let you put your arms above you shoulders for awhile & there are weight restrictions for lifting. Exchange wasn't bad at all. I did stay overnight, but many women have this as an outpatient procedure.

    I'm so glad I had reconstruction. I can jump up in the morning, pull on my clothes & go.

  • 7of9
    7of9 Member Posts: 833
    edited January 2017

    wallan, sorry you are back here again. I hope you only get good news from here on in (best case scenario etc). I'm sure catching it with a scan and not due to symptoms is already working in your favor. I had a recurrence after just 3.5 years. It sucks. But here I am a year later and clean CAT and ultrasounds. Prayers, Ambien, Attivan, and good luck...in whichever order you choose!

  • wallan
    wallan Member Posts: 1,275
    edited January 2017

    yeah, so thanks guys. Ativan. yes. I have that, but its low dose.

    I need Xanax. I need stronger meds. I do feel better though now that its moving forward. I am still terrified deep inside because if I let my mind go there, I don't want any more treatment and I think I am done. This is it. The last treatment regime must have traumatized me more than I realized because if I dwell on it, I don't even want to go the centre where I had the treatment. My mind wants to run and I don't want anymore treatment. Kind of like being afraid to go the dentist after a bad root canal or something only 500x worse. I am afraid of the treatment. I don't want to go thru it again.

    And then I can feel more positive. And even excited when I think of reconstruction for example. I think I can beat this and its okay. I am more upbeat.

    But then my mind can go to what if the MRI shows its inoperable? Or I think, what if I need a CT scan or bone scan and its spread? What if my chronic heartburn is actually mets?... et etc etc.... I freak myself out. So still, inside, I am terrified. This is why I think I need meds for anxiety because I can't seem to stay in the positive. I am sure you all understand.

    Heres hoping for best scenario with MRI...and biopsy results after full mastectomy....

    70f9: I am so sorry about your return. It does suck. There are no other words to describe. I am glad to here you are NED now.

    wallan





  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2017

    wallen, I sent you a pm. My recovery from DIEP was good. I needed very little medication in fact Tylenol pm was what I had at night. The area was numb for a long time. My stomach area was also numb. My doctor said I was one of his most resilient patients. At the 2 week check up I could have driven myself but I didnt. I took 6 weeks off of work. When I went back I was tired at the end of the day and had trouble sitting for long periods. I never suffered from pain. During the 1st weeks recovering I dreamed I was on a toaster oven conveyer belt. My whole front was adjusting with a burning sensation. I took Tylenol right when I woke up.

    The best part was a flat tummy and wonderful matching breast symmetry I looked great. I put on almost 30 pounds from AI medication since then but now that I am off it 15 pounds gone so far. Still working to get back to target.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited January 2017

    Wallenberg- sorry you are back here again. I am now experiencing my 3rd round of this dam breast cancer with mets now to my peritoneal and spine. You are correct that is is much harder mentally thn the first round. I think it's because we know what we are going to be put through and then some. I finally aske to be put on an anti depressant. It has helped me sleep and put on weight I desperately needed. She said it could take four - six week to help with the stress and depression so I'm not feeling it yet. I really hope you won't need chemo.

    Hugs...Diana

  • wallan
    wallan Member Posts: 1,275
    edited January 2017

    Thanks Diana:

    I am so sorry to hear of your mets. That sucks. Who knew BC can spread to your peritoneal area of all places. How are things responding to treatment?

    It is much harder next time around mentally. You are dead right about why too. It is the dread and horror of having to go thru everything again. I tried to explain to my husband that when he goes to the dentist and has a bad root canal he is afraid of the dentist after that. Only its 500x worse for me because of the horror of treatment I am about to face and because of knowing it may not cure me and I may need this forever now.

    I am trying to be positive and optimistic and not defeated. - but I must say underneath it all I am pissed off and sad and terrified. My family is saying, what is the big deal, you did this once and it was fine. No it was NOT fine. It was traumatic.

    it is working up the gumption to do it again.

    Thanks again Diana for saying that to me. I feel validated.

    God bless. You are in my prayers.

    wallan

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2017

    I think hobbies are a great distraction. I did a lot of crafts and painting second time around. It was wonderful for the soul! I also did a lot of crosswords, Sudoku, etc. These were great distractions because my mind was engaged elsewhere.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited January 2017

    Wallan- I have some scabs next week that will tell the story. I have been able to eat and have gained 8-9 pounds back so something must be working. Just did chemo number 10 on Thursday and feel like crap today. Body hurts and skin is sore. Feels like a bad sunburn.

    Kabee. - I do a lot of crocheting to keep busy. I get bored with tv.

  • wallan
    wallan Member Posts: 1,275
    edited January 2017

    Hey:

    Tomorrow is my MRI and surgeon appointment. I am happy to have them, but as the evening wears on I feel the weight of it.

    I am terrifed and I had a good cry again today. I drove around listening to music loud in my car. And had a good cry.

    The things people say too. It is wise to only tell certain people about your diagnosis. People can say the stupidest things which plays on your mind. I remember this from last time and have been poignantly reminded again this time.

    wallan

  • Lucy55
    Lucy55 Member Posts: 3,044
    edited January 2017

    Wallan ...We are all in your pocket tomorrow....

  • wallan
    wallan Member Posts: 1,275
    edited January 2017

    Thanks Lucy. I just read an article on this site about PTSD from breast cancer dx. I wonder about this. I do know I fear going thru all the treatment AGAIN. I told my doctor when I first got the news I would NOT go back to the cancer treatment centre. Its crazy. I feel crazy. Emotions all over the map. I just want to feel settled and positive.

    I read too that venting is good so I am venting I guess. I do recognize familiar feelings from 13 years ago too. My natural tendency is to hide it or stuff it or talk myself out of it. But I am trying to not do that. I am distracting myself or trying to. But they are strong and overwhelming. I need to get them out. I cannot ignore it.


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    Vent away anytime. We've all been there. Good luck with the MRI & BS appointment tomorrow. Please do let us know.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2017

    Thinking of you tomorrow, Wallan.

    PS - is there possibly a therapist or oncology social worker who can help you get through some of this?

  • wallan
    wallan Member Posts: 1,275
    edited January 2017

    Hey:

    I just returned from my MRI. That was an experience I have never had before. I felt like a torpedo in a submarine. LOL. The poor patient after me would not get on the table after she saw what she had to do. They were trying to convince her when I left.

    My surgeon appt is in a few hours. Apparently the MRI results will not be ready for a week. Another whole week. That means surgery will not be for another whole week most likely. How am I going to distract myself for that long I wonder....

    I have thought of seeing an oncology social worker or psychologist. - I actually booked an appt with a psychotherapist and went and saw her yesterday. I just looked in the local phonebook type thing. But she was unfamiliar with cancer patients and had alot of BC and ovarian cancer in her family she is dealing with now, so not the best resource in some ways. I need to go to the cancer centre and talk with people there. I need Ativan. LOL.

    I may go back to my family doctor for referrals to someone to talk with.

    I will vent here to ladies who know.....

    Thanks everyone.

    wallan

  • MameMe
    MameMe Member Posts: 425
    edited January 2017

    Hi wallan, I can offer another support for you, having been through two episodes of BC, opposite breasts, followed by a mets dx 18 mos later.

    I was really sobered by the second episode, as I had minimized the first one and had felt invulnerable to any further cancer. Physically, though, it was easier to recover and get back to work, as I knew what to expect. Also, I just had lumpectomies, SNB's, and radiation, no mastectomies.

    Progress has been made in acknowledging the unpredictability of cancer, but the treatment field has a long way to go in informing patients of the real possibilities.

    I totally support your need to rant, rave, and otherwise express your outrage. Having a good cry does relieve the pressure a lot, but can,t be scheduled very effectively! I look forward to hearing about the path report and choices. I also, in retrospect, feel that taking time off of work is valuable to your nervous system. If you feel a big relief imagining a six month leave, then that tells you something. Tust your body.

    Big hugs to you, Mame


  • wallan
    wallan Member Posts: 1,275
    edited January 2017

    Hi everyone:

    Just got back from my surgeon. She expedited the MRI results. I have two tiny tumors less than 1 cm. Nodes look clean on imaging. But she suggested a sentinel node biopsy first to check for micromets to nodes - scheduled Feb 10. If negative, I will not need radiation or chemo. If positive, I will likely need radiation and chemo. Blah....

    Then, she said I will have mastectomy with reconstruction node positive or not. The mastectomy + reconstruction will happen within a month. She referred me urgently to a plastic surgeon for the reconstruction consult. I did have a mastectomy last time, but NO reconstruction. So she needs the plastic surgeon to decide if I can have reconstruction on that side now when I have my new mastectomy.

    So I am relieved that there are only two tiny tumors and likely no mets to lymph nodes. She was very reassuring and kind.

    I am going to go to my family doctor for anxiety meds. I still need to wait and I find that I am stilling thinking its still CANCER.


    wallan


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2017

    Wallan, I'm so glad your MRI results were expedited. There was no reason in the world for them to take a week, frankly, unless you're in Antarctica or on the dark side of the moon. Also glad to hear that things don't sound too bad but am crossing my fingers that your nodes are, indeed, clean. As to the stress and anxiety - you might consider asking a nurse navigator (if you have one) or your surgeon if they can recommend someone who does a lot of work w/cancer patients, as well as checking wit the cancer centre. In the meantime, come here and let it all out. Re-read Mame's comments - they strike me as very much on point. Sending you lots and lots of support.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2017

    Wallen - if you know you will be having a mastectomy, why would you bother with sentinel node biopsy as a separate procedure? Why not just test the SNB with one surgery?

  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hi MinusTwo:

    I asked the surgeon the exact same thing about why not one surgery. She said if I want immediate reconstruction, she needs to know if I will need chemo and radiation before the mastectomy. Because if the nodes are not clean, I will need to have a reconstruction after all treatment ends. And this effects how she does the mastectomy too.

    I looked this up later and this is a good standard of care. Having immediate reconstruction now is the least invasive and quickest thing for me too. No more lengthy surgeries later.

    Ideally, I do wish I was only have one surgery and I didn't have to wait for yet more results. On the other hand, if I was having the mastectomy and SNB in one surgery, I would still need to wait for results to see if I needed chemo. It seems waiting for results is the new normal for me lately. Things are moving along pretty quickly for me actually despite everything. In Canada, wait times are long usually. I do need something for anxiety because the waiting is very difficult for me.

  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2017

    wallen, I really think the nodes will be clear. The MRIs are so good these days. This should be alot better than your first go around. Wishing you the very best.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2017

    Wallen - thanks for your answer. I had TE's placed during the initial BMX and exchange to implants later, so I guess that's the difference. Still only two surgeries tho. Wishing you B-9 nodes.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2017

    So glad you got your results and that your nodes appear to be clear. My recurrence was 2 small tumors too. Request Oncotype to help decide on chemo because recurrences after mastectomy can tend to be sneaky and more aggressive. Hoping you can get Ativan and see a social worker who can be helpful. We're all here for you

  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hi Kbee....

    So you had chemo despite node negative? The surgeon said that in Canada they do not do oncotypes. I am a bit nervous in that my cancer last time was locally advanced and I wonder if chemo is best anyways. On the other hand, no chemo would be awesome. But I do want to minimize recurrance risk. It is so hard to trust that the medical team knows what they are doing.

    The surgeon told me the radiologist should have biopsied both tumors because they were seen on ultrasound and mammo. He only biopsied one. And she told me he should never have told me it was "complex" and a recurrance of my former cancer. She insists this is a new primary and very early stage that is "curable". So, I am getting two stories. Different opinions. Who do you trust?

    I guess BC is just unpredictable and out of your control anyways. No matter what treatment you get it seems. Sigh...

  • Optimist52
    Optimist52 Member Posts: 302
    edited February 2017

    wallan, my second diagnosis was in same breast so I was confused about whether new primary or recurrence. My BS initially said new primary but later said it wasn't that important! I'm in New Zealand and had to pay NZ$5000 for the Oncotype test as not available through medical insurance. It would be worth investigating whether you can have it.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2017

    The oncotype or Mammaprint would definitely be helpful. Most have a cap you have to pay out of pocket. You can call them for more info. I would ask specifically why the MO does or does not recommend chemo. I'd ask for the risks and benefits for your situation.

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