Third recurrence

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Lisko
Lisko Member Posts: 4
edited August 2019 in Just Diagnosed With a Recurrence or Metastasis

I have just been diagnosed with my third recurrence of breast cancer. Each of my recurrences have come 11 years apart. I am actually super healthy and active at age 64! This recurrence appeared in my axillary lymph nodes. After receiving multiple opinions on approaching the cancer I went with surgery first. I had an axillary dissection and they found only 1 out of 4 nodes positive for cancer. Miraculously my PET scan prior to surgery showed no metastasis. I an now facing very different treatment protocols from top notch medical facilities. One recommended T/AC chemo, radiation and AI drug for life. The second said I was in the gray area for chemo and he did not recommend it because of the harsh side effects from the "red devil". Instead he recommended radiation and AI for 5-10 years. Given the vastly different recommendations I am seeking yet a THIRD opinion. My questions is this: has anyone received the same chemo drug for a recurrence that they received before? I had TC with my last diagnosis and would be willing to have that again as it seems to be less harsh (and shorter span) than T/AC. Initially the second oncologist said he would go with TC but then contradicted himself later. (another reason I am a little leery of him). I would appreciate any insight from people who might have been in this situation. Thanks!

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2019

    Lisko,

    I don't have any advice on chemo, but boy, your story about timing of recurrences sounds so much like my own. Originally lobular carcinoma in situ found in 1990/1991 (no treatment at that time -- only watchful waiting); diagnosed with invasive lobular in 2003; little blip with a weird single site metastasis in 2006; all well until this May (2019). I only did chemo on 2003 ILC diagnosis, and it was TAC. With 2006, I went on letrozole and it held everything at bay until 2019. Currently on Ibrance/faslodex.

    From reading many of the threads on BCO, I'm seeing that most people at this point would be put on an AI, so my gut tells me that the radiation combined with an AI would probably be where most docs would end up? Just offering a perspective here.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2019

    I haven't been in your situation, but I'm thinking that doing TC again might not be an option because it didn't prevent recurrence in the long run. There is no lifetime limit on TC or its cousin Taxol; metastatic breast cancer patients can stay on Taxol for months and even years. By the way, I did AC chemo and it was OK (for me). It's worst side effect is heart damage, and anyone with a heart condition should probably avoid it. Best wishes!

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2019

    First of all, I am sorry you are dealing with this again.

    I had TC chemo the first time, and AC+T the second time. I have to say that I tolerated "the red devil" very well. If you do end up getting it, PM me and I'll pm you my very long "chemo survival tips" that I think served me well. Most of them I learned here from others, but I compiled them into a long document! I am only 4 years out from my second go-round, but so far, so good (knocking wood as I type). I had zero vomiting and zero mouth sores with the red devil. Honestly, even though TC is considered "chemo light", my body tolerated AC+T better. Everyone is so very differnt.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited September 2019

    Kbeee, I hope you don't mind me asking, but from your bio it appears that you had cancer after your mastectomy. How was it discovered? Thank you in advance! I feel having had breast cancer twice I should be an expert but I feel the more I know, the more I realize I don't know!

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  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited August 2019

    This is what I found: https://www.nursingtimes.net/clinical-archive/cancer/breast-cancer-chemotherapy-drug-adriamycin-doubted-while-herceptin-praised/5036102.article

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  • LaCombattante
    LaCombattante Member Posts: 226
    edited August 2019

    Lisko, I am so very sorry you are dealing with the 3rd recurrence.

    As you can see from my signature, I am dealing with recurrence in auxiliary lymph nodes (6 out of 8 were cancerous), nearly 8 years after my original diagnosis of stage II, grade 2 ILC.

    Since I recurred while on letrozole( I did not have chemo first time, my treatment was uni mastectomy, IORt and tamoxifen / femara), tumor board recommended chemo. One oncologist did question this, given that I have ILC again and it remains hormone receptor positive (ER 80/ PR 70) but the majority felt very strongly about chemo... and so did I. Yes, I do know that ILC is not that responsive to chemo, yet, this time I want to throw a kitchen sink at it.

    I finished EC (epirubicin, European analog of the red devil) and am almost half way through 12 weekly taxols. So far I find the whole experience taxing but manageable.

    Shellsatthebeach, the link you posted seem to compare efficacy of adriamycin containing regimen with Herceptin - I guess the findings are relevant for HER2+ cancers. I could not download the full report.

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  • LaCombattante
    LaCombattante Member Posts: 226
    edited August 2019

    Lisko, I am so very sorry you are dealing with the 3rd recurrence.

    As you can see from my signature, I am dealing with recurrence in auxiliary lymph nodes (6 out of 8 were cancerous), nearly 8 years after my original diagnosis of stage II, grade 2 ILC.

    Since I recurred while on letrozole( I did not have chemo first time, my treatment was uni mastectomy, IORt and tamoxifen / femara), tumor board recommended chemo. One oncologist did question this, given that I have ILC again and it remains hormone receptor positive (ER 80/ PR 70) but the majority felt very strongly about chemo... and so did I. Yes, I do know that ILC is not that responsive to chemo, yet, this time I want to throw a kitchen sink at it.

    I finished EC (epirubicin, European analog of the red devil) and am almost half way through 12 weekly taxols. So far I find the whole experience taxing but manageable.

    Shellsatthebeach, the link you posted seem to compare efficacy of adriamycin containing regimen with Herceptin - I guess the findings are relevant for HER2+ cancers. I could not download the full report.

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  • Lisko
    Lisko Member Posts: 4
    edited August 2019

    BevJen...Thank you for your input. Your story is indeed very similar...you would think twice would be enough for us! I think you are correct about the AI and radiation vs chemo. Apparently virtual tumor board at Hopkins has agreed with that oncologist on this approach. I am getting a third and hopefully "tie breaker" opinion today.

    Kbeee...Thank you for the offer on red devil tips. If I do end up on that, I will definitely PM you. I tolerated my TC chemo well and I am always happy to take advice from others who have actually gone through it.

    MavericksMom...My third recurrence was in my lymph nodes. I actually discovered it when I felt the node and subsequently had a core biopsy in my surgeon's office. Size verified later on breast MRI as 2.5 cm. Here is the sad part. I had a CT scan two years ago for respiratory issue. The enlarged node was present at that time and measured 1 cm. Unfortunately that radiologist reported no lymphadenopathy! I only learned it was there when my PET scan radiologist looked at the images from 2017 and compared it to 2019 scan. Really...can't you do your job??


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  • Lisko
    Lisko Member Posts: 4
    edited August 2019

    LaCombattante..sorry you have gone through the ordeal but thank you for your frankness. I can understand why they recommended chemo for you. Throw the kitchen sink at it and fight hard! All the best in your battle...as they say, you got this!

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2019

    Lisko,

    I am being treated at Hopkins, so it's interesting that the virtual tumor board there agreed with the AI/radiation. And yes, it ain't fair! Twice is more than enough!

    Good luck with your third opinion.

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2019

    Lisko,

    Just checking in to see if you've received your 3rd opinion today and what it was? Curious to see the path you choose. Keep us posted!

    --The Mods

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  • ErnRoo
    ErnRoo Member Posts: 7
    edited August 2019

    Every one is so different especially when it's your second rodeo. I just had a recurrence 20 months after a mastectomy. I found the lump myself by sheer luck. Every week,I examine my scar, collar bone and underarm, but this one was so deep I didn't feel it. By chance I was lowering my arm as I finished up checking under my arm and I felt it. It was hard for the radiologist to find it but they were able to get it on a mammogram--yes they can do a mammogram on what's left after a mastectomy--they just don't do it for screening. That's why it is so important that we check every week or at least every two weeks.

    Anyway after the first surgeon said he was going to "take everything" meaning every lymph node on my right side, I got a second opinion and ended up with an excellent surgical oncologist and ended up having a lumpectomy and radiation.

    The tumor was in my scar tissue and the chemo and armidex didn't stop it according to my oncologist because they require blood flow and scar tissue doesn't have any or much blood flow.

    My oncologist never gave me a physical exam after I finished chemo and they wouldn't do any screening or ultrasound on my mastectomy side. Luck was with me that I found such as deep, small tumor . . . .



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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2019

    Maverick'smom, I found the lump myself. It was actually very hard to feel; I felt it in the shower, and had to have my hand at just the right angle to feel it. Hence my doctors were 99% sure it was scar tissue. My gut told me otherwise (and my gut has never been wrong), so I asked for a biopsy, which they did 2 days later. They were shocked the cancer had returned. I was not.

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