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  • KBeee
    KBeee Member Posts: 695
    edited December 2017
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    Mauella, We had the same oncotype the first time!

    Since the lump came out in chunks, they could not accurately stage me. I also had a second lump.

    I loved, loved, loved my reconstruction. After radiation, my radiated side is very tight, a bit hard, and a big higher, though no one other than me notices. That being said, I have always seemed to produce a LOT of scar tissue, and MO says he has never had a patient in 20 years whose reconstructed breast turned that hard after radiation. He comments on it every visit! I think most women do not have the issues I have. I had all nodes, including intramammary and supraclavicular radiated, even after ALND. Different ROs may have different plans.

    Buttons, sorry you are dealing with this again. What is their plan this time??

  • Eschindler
    Eschindler Member Posts: 29
    edited December 2017
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    Hi,

    Just chiming in with a loco-regional recurrence in a sub pectoral level 3 lymph node. I am scheduled for surgery 1/11, followed by chemo and radiation. I'm really angry I have to do this all again after a really hard time with the first one. But, since we've caught it early again, my prognosis is good, so I need to hang on to that. I have two kids- 4 and 6. I'd like to live a long life for them. However, facing all this treatment again is depressing and overwhelming.

    Wishing you all a restful holiday and successful treatment! -E

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited December 2017
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    Eschindler, we hear you! That was my overwhelming feeling too, angry (not that I wasn't also scared and depressed)! At least its all familiar - that's about the only advantage second time around. You gotta do what you gotta do, and you will.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited December 2017
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    I also wasn't staged for my recurrence - they just called it "recurrent stage 1 BC." I recently had surgery, started AC chemo yesterday(!), and then I'll switch to OS and AI's since tamoxifen didn't do much to stop my cancer. They are even considering radiation again even though I just had it less than a year ago. That's the general plan so far, but my cancer is really fast growing, tricky, and stubborn. Even the doctors are unnerved by it... so there might be a clinical trial or something more in my future. I think probably need that extra help. Best wishes to everyone going through this for a second time! We can do it!

  • Manuella
    Manuella Member Posts: 22
    edited January 2018
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    Had appt with RO Tuesday.

    He made it sound like I'll be dying any day now. Apparently bc this thing survived chemo and was in the skin, blood vessels could have carried it everywhere :( They want to do whole breast/breast bone/ lymphnodes radiation for 6 weeks and 5 boosts. Wtf? This thing was 2mm and left there by them!!! 😡😡😡 I know that MSK is known for over-aggressive treatments but this sounds crazy to me. Anyone else get that much radiation due to local recurrence?

    They said no more chemo which confuses me, specially if this could have travelled all over my body (I finished dose dense CMF in May 2017). I have an appt with my MO at the end of the month. She originally said we’ll continue with Tamox as she believes it’s working, but I’ll ask about adding Lupron to the Tamoxifen (hated letrozole so hoping to avoid an AI).

    I was originally stage 1B so had an ALND, I don’t want them to radiate under my arm! :( So angry about all this, also really really worried about lymphedema and my implant.

    Sorry for sounding so whinney, btw. I’m feeling down in the pits today.


  • Manuella
    Manuella Member Posts: 22
    edited January 2018
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    eschindler and buttons, how are you holding up? Hoping the SEs are minimal with chemo. Fingers crossed this is the last time we’ll have to deal with this, babes.

    Btw, I wasn’t re-staged either. They said same stage (1B) with a recurrence. Sounds weird to me, but whatevs. Like TwoHobbies wisely told me: what difference does it make? And really, I keep finding myself on the bad side of really good odds, so percentages are starting to mean very little now. Breast cancer twice, in my mid 30s, with a low oncotype. Still so surreal 🤦♀️

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2018
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    Hey Manuella, nice to hear from you! I know exactly what you mean about being on the bad side of good odds. I also stopped caring about statistics since my cancer seems to defy all the odds.

    It's interesting what you say about the radiation, because they are talking about radiating me again too. I'm skeptical, but I haven't seen the RO yet. I thought they didn't radiate people twice, especially so soon after last time, so the fact that they are considering it gave me a sinking feeling that the doctors are getting desperate. I'll just try not to think about that.

    I'm doing dose dense AC chemo right now, and overall it has been easier than the TC chemo I had last year, at least so far. Fingers crossed that it stays that way. I am getting an MRI and a punch biopsy next week for a new lump in my mastectomy scar. If it is cancer, that means my cancer will have survived a lumpectomy, chemo, radiation, tamoxifen, and a mastectomy. Unbelievable.

    I can't imagine why they are saying no more chemo for you. Can you get a second opinion? Keep us posted on everything!

  • Manuella
    Manuella Member Posts: 22
    edited January 2018
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    buttons, fingers crossed the new lump is just scar tissue. I was checked for another rice-looking thing on the edge of exicion scar Tuesday and it’s scar tissue.

    I’m going to memorial sloan so I figure it only gets better if I go to MD Anderson, which I considered- but no way can I move to texas for 6-7 weeks for radiation. I have an appt at NYU Langone and at Weill Cornell for other opinions next week.

    Both RO and MO say radiation is what I need. They say I had dose dense chemo six months ago and it was only bc of my age as oncotype was low (miotic score is 1 and cancer is grade 2). I will ask my MO to present my case to the tumor board at MSK, we’ll see. I’d have pushed for it before now but thought it was not necessary until RO scared the living F out of me this week. God knows I don’t want more chemo, but better make sure everyone is on the same page about this :(


  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2018
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    Hey Manuella, I guess no more chemo makes sense if your oncotype is low - it might just do more harm than good. I am grade 3 and high oncotype so I knew more chemo would be in the mix for me. It's good you're getting other opinions though. I've found that 2nd and even 3rd opinions have been really helpful, especially now that my case is more complicated. Best wishes for your appointments next week!

  • Leee
    Leee Member Posts: 115
    edited January 2018
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    Ugh ...I’m at a loss for words on this...Just dx’d today with a reoccurrence of IDC after having a bilateral mastectomy in 2004. Will have breast MRI on Monday.

  • KBeee
    KBeee Member Posts: 695
    edited January 2018
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    Manuella, I am glad you are getting multiple opinions. Have they rechecked your oncotype? The first time my oncotype was 16. With my recurrence, Mayo was SURE I would not need chemo and refuced to do oncotype. They just said my surgeon mu st have left some behind. My gut strongly felt I needed chemo, so I asked my local oncologist to order oncotype which he did. It came back at 40! Chemo was very warranted, and after that, Mayo agreed. A couple surviving cells can grow into a tumor that's more aggressive than before, so don't hesitate to ask for them to test it again to cover all bases. The other train of thought is that if it indeed a low oncotype, chemo would not have much effect on it, so it would not be warranted. In any case, you'd have more information to make your decision.

  • Christmascarol
    Christmascarol Member Posts: 19
    edited January 2018
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    hi ladies,

    My heart always sinks when I read about another one of us facing this situation for the second (or more) times. Since I posted I had surgery and rads now the dreaded letrozole. Already did five years of tamoxifen before the recurrence. The second time for me was/is way more difficult. Plse keep us posted ladies. Tri, I also had a later recurrence. Just when we think.....maybe thought/hoped we're clear we are facing this crappy situation again. I am calling it round two. Hoping for the best for all of us. Thanks so much to all the ladies who have gone through this ordeal and are sharing...........just so comforting to know there are others who get this. Not only that but there is some really good advice out there. So helpful when a person can feel so overwhelmed.Xoxo

  • Eschindler
    Eschindler Member Posts: 29
    edited January 2018
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    Hi ladies-

    No new updates- I'm still just pissed off. I have my ALND on Thursday. I already have lymphedema from all the surgery/infections I had the first time around. Now I will probably be in OT and lymphatic massage + sleeve/glove for the rest of my life. I am only 34. Before all of this, I was athletic, and I had just started to be really able to run again when I was diagnosed with this dumb recurrence. I have to start all over again.

    In any case, I just keep holding on to the idea that this treatment will work, the cancer will go away for good, and I'll be done. But, it's SO HARD to think that the second time around. I'm having a hard time fighting the thoughts that say that this is going to just come back, and come back, until it kills me. As part of those unhelpful thoughts, I think that by the time it does kill me, my kids will be old enough to witness this entire shit show and will never, ever get over it. So, yes. Some dark thoughts there. I have a therapist who is very helpful, and I'm fighting the bad thoughts, but it's so hard now!

    I hope you ladies had a great holiday, and perhaps got to spend some time NOT THINKING ABOUT CANCER. -E

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited January 2018
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    Eschindler, I'm glad you have a therapist to help you. I think its sort of inevitable to have these fears and dark thoughts. One thing I did was notice what I was doing when I wasn't having them, and literally I kept a list of those happy acivities and distractions. Do more of those. And if you were OK and then get into a black mood, what were you doing that sent you there - do less of that.

    Manuella, the only thing I'm confused bout in your treatment is the idea that tamoxifen is working for you. Why does your MO say that? Were you on letrozole while pre-menopausal?

  • Manuella
    Manuella Member Posts: 22
    edited January 2018
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    MyTwoHobbies, I’m really not sure what’s going on. My Oncologist is making this sound like “nothing”, and the RO makes it sound like I will die from this soon.

    I started chemo in Jan 2017, 11 weeks post mastectomy (did IVF, waited for tumor board decision on chemo since I had low oncotype but they debated bc I was in my mid 30s). The little rice looking nodule was already there when I started chemo (it’s in PS pictures). It seems it was seeded during biopsy and grew in those three months between biopsy and the start of chemo. I finished chemo/lupron in May 2017 and didn’t start Tamox until the end of July (had exchange surgery in June and then tried to lose chemo weight before starting Tamox). So that was another 3 months without treatment. So in reality, I had only been taking tamox for 4 months (-3 weeks for second plastic surgery in Oct) when I was re-diagnosed and there is photographic evidence this thing was there way before I started Tamox.

    This new nodule was the EXACT same cancer type/expression as first, except for ER being 10% less. 1) ER 70% PR 95% Her2- 2) ER 60% PR 95% Her2- And from photographs you can see it forming IN the biopsy scar starting in Jan (how did they not catch this?!?!?!).

    I had Letrozole for 4 weeks during IVF and it was terrible. Had such bad joint/bone pain :( I also did Lupron during chemo to protect my ovarian reserve (which umm, didn’t work.)

    I have an apt with my MO Jan 29 but will call tomorrow to see if she can see me this week. I want her to take my case to the the tumor board and I want to at least do Lupron with the Tamox though lord knows I HATED Lupron but I’m so freaked out right now I’ll try anything :(

  • KBeee
    KBeee Member Posts: 695
    edited January 2018
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    Eshlinder, I ran all the way through chemo. I think it helped me both physically and mentally. I alternated walking and running...run a mile walk a mile, etc. If I was tired, I would just walk that day, but I did a minimum of 4 milers per day.

  • rwhite
    rwhite Member Posts: 12
    edited January 2018
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    Hi All, this is my first post. Starting the New Year with my first recurrence, I would have been 5 years in June. Was experiencing swollen lymph nodes and tightness under my left IDC arm. Although Oncologist didn't feel anything, ultrasound was suspicious and needle biopsy came back metastatic adenocarcinoma. Will have CT and PET scan this week along with MRI to be sure this hasn't spread further. Best case, this is a regional recurrence in axillary lymph nodes.

    Beth-In-Tenn, my situation sounds like yours. If no spread, Oncologist is referring me to Moffitt Cancer Center for surgical removal of lymph nodes followed by radiation. At surgery in 2013, both sentinel and one other lymph node checked were clean so I had my bilateral mastectomy and TCH chemo. Have been on Arimidex for 3-1/2 years.

    Sad that I found my own cancer both times. After prophylactic hysterectomy in 2016, sure thought I shut down my little estrogen factory, but maybe not. Looking for advice on any questions I should be asking my Oncologist on Friday or Moffitt Hospital in a few weeks?

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited January 2018
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    Tri and Rwhite, sorry you have joined the club.

    Manuella, OK that might make more sense about the tamoxifen now that you explained more. They literally can go back and see the cancer on your previous records, so perhaps it didn't grow any or maybe even got smaller so she thinks tamoxifen is working. I would just ask and make sure you are comfortable with the answer. Too bad they didn't see it at the time. Stupid cancer.

  • Eschindler
    Eschindler Member Posts: 29
    edited January 2018
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    Thanks, Kbee and Twohobbies! I am going to try to walk through treatment. I have surgery tomorrow, though, so I will be a little laid up for a few weeks. But after that, it's on. Thanks for the encouragement!

  • KBeee
    KBeee Member Posts: 695
    edited January 2018
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    Eschindler, I hope you recover quickly!

    rwhite, sorry you are dealing with a recurrence. I would want to know the pathology of the new cancer. It may or may not be the same as the initial diagnosis. I would want to know the plan as far as chemo, herceptin, etc after surgery. Knowing the plans for all of that will help you map out your next year.

  • shortney36
    shortney36 Member Posts: 7
    edited January 2018
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    I am in Sarasota too and just had my BMX at Moffitt. You should ask for Dr John Kiluk . He is a brilliant surgeon and did my bilateral mastectomy and axillary lymph removal I will be going to Gray Swor for radiation in Sarasota she’s supposed to be great.


    Good luck

  • rwhite
    rwhite Member Posts: 12
    edited January 2018
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    Hi Shortney36, hope you are taking it easy after surgery. I remember being so happy to get the drains out!! Back in 2013 I had BMX at Sarasota Memorial, sugeon Dr. Nora. I don't think the surgeon missed anything when they saw no involvement after SLVB, but obviously TCH chemo, anastrozole and proph Hys didn't keep the BC away.

    Hey KBee, met with ONC and my studies came back that this is the same original cancer, confirmed the regional recurrence diagnosis. Very happy PET,CT and MRI scan were clean except for lymph nodes under left arm. The plan is surgery within the month and then 6 weeks radiation. Will discuss with Moffitt any recommendations for changing Hormonal Therapy, the arimidex didn't keep this away, and if chemo is necessary at this time.

    I see the bio for Dr. John Kiluk on Moffitt's site, but ONC referred me to Dr Nazanin Khakpour, who is his colleague and they have worked closely in the past. I have a long list of questions including lymphodema prevention and if radiation will damage my silicone implants, ugh..

    It is a bummer but, my biggest fear is what will pop up in 3-5 yrs... Kind of funny that you see the Oncologist quarterly the first few years and then back off to 2 times or 1 time as time goes by. Seems like that should be reversed, the time to meet more often is after the chemo has worn off and the body gets used to the hormonal therapy and the cells become resistant! Will bring that up at my Moffitt new patient meeting next week.


  • Christmascarol
    Christmascarol Member Posts: 19
    edited February 2018
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    tri,

    Thinking about you. Any update you would like to share?Last we heard you were getting an MRI. I know it is a busy time. I went from MRI with my recurrence to surgery and then radiation. Xoxo

  • KBeee
    KBeee Member Posts: 695
    edited February 2018
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    I did have radiation with implants, but I know it was more challenging for them to do the plan.

    Hoping they can get you a Lymphedema sleeve to use when doing physical work to help prevent swelling.

    Hoping the appointment goes well.

    And I have never had treatment in FL, but I did spend several weeks in Venice every summer growing up. I love Sarasota

  • moderators
    moderators Posts: 8,219
    edited February 2018
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    Sorry to interrupt, but wondering if anyone here would be interested Medicating

    Hi All,

    Here is a unique research opportunity to participate in a 3 day online community – for women who have experienced a local recurrence of breast cancer OR their caregivers.

    Find a Cure Panel specializes in patient research for rare and serious diseases and has some online research for people and caregivers of people with breast cancer.

    It's very easy to participate in.

    It's one 3 day confidential and anonymous online community. The total time commitment is 60 minutes or 20 minutes per day.

    This community focuses on you or your loved' one's experience with the treatment of breast cancer.

    If you participate in the community, FACP will donate $200 to BCO.

    To qualify for this research, you or you loved one must:

    1) Be under recent treatment for BC and

    2) Had a local recurrence in the last 2 years (as opposed to newly diagnosed)

    This is an easy way to share your experience but also LEARN from the other 30 participants.

    If you are interested in participating, please contact FACP at info@findacurepanel.com and reference FACP/BCO

    Thank you so much!

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited February 2018
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    Hi all, I was just wondering if anyone else has encountered something similar to what I'm going through. I had a mastectomy for a local recurrence three months ago. They got clear margins, but I did have a lot of focal lymphatic/vascular invasion. One month after the mastectomy my cancer was back and growing again in the mastectomy scar, and in the skin, which was previously unaffected.

    They are now talking about a surgical resection of the whole mastectomy area with a possible skin graft, and removing the tissue expander so I can be radiated for a second time. Also they are talking about an ALND. Frustratingly, the MO has no further opinion on chemo until the surgery results are in.

    Anyone have a skin graft? Or an ALND? Or radiation for the second time? How was it for you? When they take out the tissue expander does the pec muscle go back to normal? I hope I don't freak anyone out with my story, I'm just looking for some insights because I feel a little lost. I will be getting a second and probably a third opinion since my situation is now so "complicated" (my doctor's word). Thank you!

  • KBeee
    KBeee Member Posts: 695
    edited February 2018
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    First, I am glad you are getting multiple opinions.

    I had ALND after my recurrence. I did not need a skin graft since there was not skin involvement. So far, I have kept my implant. I do know someone who had implants removed for unrelated reason, and the pec muscle did return to normal.

    Since my recurrent tumor was sitting on my pec muscle they did cut out a portion of the muscle, but it had not had any effects that I notice.

    Sorry you are dealing with this.

    Keep us posted

  • Christmascarol
    Christmascarol Member Posts: 19
    edited February 2018
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    Hi buttonsmach,

    We are in such a rare category. So sorry about all you are going through. The only help i can offer is that i also had some of my pec muscle removed, like KBeee. I didn't even know this was done until i read the surgical report. I don't have any pain or limited use, just some tightness that requires some regular stretching. The surgeon was able to get clear margins on my recurrence and close the site without a graft, so i can't help there. After that i had radiation. xoxo

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited February 2018
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    Thanks Christmascarol and KBeee, it's reassuring that you both made it through something similar. It's so true - we are in a rare category. There are still a lot of unknowns for me, but I'm hopeful that it's still just a local recurrence and that it can be dealt with.

    I'm just feeling worn out because I've been in some form of cancer treatment for about a year and a half, and even after everything I've done I still have more surgery, chemo, and radiation ahead of me. Not to mention the hormones. I just feel discouraged, and I feel that my body can't keep doing all this treatment. I wish there were better ways to treat cancer.

  • KBeee
    KBeee Member Posts: 695
    edited February 2018
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    (((Hugs))) one day at a time. And anytime someone says “let me know what I can do to help”. Reply immediately with a task. “I could use dinner next Tuesday; I’d love To get out for lunch sometime; I could really use someone to vacuum for me.... or help me fold laundry.....”