Calling all TNs
Comments
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ucfknights, pCR is pathological complete response. Here is the definition from cancer.gov
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/pathologic-complete-response
And a little different definition: "A pathologic complete response is usually definedas the absence of residual invasive disease in the breast and in the axillary lymph nodes at the completion of the neoadjuvant treatment. ... Thus, patients who achieve a pathologic complete response are at much lower risk for subsequent distant disease recurrence."
Also here is the list of abbreviations you can find on this site. Look at the bottom on the left margin for the link
https://community.breastcancer.org/forum/131/topics/773727?page=1#idx_1
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Thank you Kber. That is great information. As with everything else, I guess this is more "wait and see".
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Good morning all. I hop in and out of these pages. I also did chemo first, had lumpectomy with 5 nodes removed. My surgery was 2 weeks after chemo. I did achieve pcr, then did 30 rounds of radiation which I finished on April 15th.
It will be a year in June 26th that is was diagnosed. I have to say the month of June has gonna to e not my favorite. I find myself going back to last year. I keep getting these fears everytime I have a pain or ache that it's back.
My first mamo will be July 10th and I am so scared. Trying to live with this everyday and worrYing about reaccurance scares the cap out of me. Anyone else feel like this.
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i am trying to find TNBC recent survivor stories. If someone can please chime in who’s 5+ years out this TNBC
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ucfknights - there are MANY of us...we just don't post often....and some check in here maybe only once a year. I have seen many posting after 10, 15, + more years during my years of following this thread.
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The fact is, we do have more to fear in the short run, but after 3-5 years, the recurrence risk drops to nearly zero. (Of course you can always get a new primary.) So, once we make it through that early window, we actually do get 'out of the woods' in a way those with hormonal or Her-2 cancers do not. My MO said he has personally never had a patient recur more than three years out.
So far, I am not stressing about recurrence. I am maintaining my routines re exercise, diet, and supplements which saw me through chemo, and I will continue at least through my 3 year window.... I am doing what I can do. Statistically I have a 10% risk of recurrence, so it isn't zero, but it isn't horribly scary either.
Has anyone besides me thought about doing some of the off-label stuff people are doing like FenBen, High dose C, or other protocols? These seem like proactive things one cold do towards reducing risk of surviving cancer stem cells....
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Hey santabarbarian. Yes, I plan having vitamin c infusions once I am done with chemo.
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my off label thing is this:
A Role for Resistance Exercise in Cancer: Destruction of Circulating Tumor Cells in Contracting Muscle
https://www.fasebj.org/doi/abs/10.1096/fasebj.2018.32.1_supplement.644.10
My take away from this one is to do resistance training which raises the heart rate to 120 for 7 minutes minimum. That's the time required for almost all the blood volume to circulate through the exercising muscle. The exercising muscle (including the heart) undergoes physical changes which makes it likely that any circulating tumor cells would be burst by the pressures in the muscle.0 -
ucfknights - I am approaching 9 years out and doing great. While I do think about breast cancer occasionally, it is not on my mind every hour of every day like it used to be. I am loving life, traveling and making memories along the way. I was 44 when diagnosed and now I'm 2-1/2 years from retirement! I remember a time when I wouldn't make plans even 3-6 months in advance and now my husband and I are making our retirement plans. Life does get better with much less anxiety about the big C returning. Now I'm just enjoying every day. We have a cruise at the end of September and going to Cabo with my whole family for a wedding in November. Life is good
Hugs,
Kathy
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Thank you Ksteve! Such an encouraging post!!!! Exactly where my wife and I want to be and will be by years end!! Thank you. Round # 3 of AC this coming Monday.
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moth I hike up a mountain a couple of times a week, so 7 minutes of going up hill w/ breathlessness theoretically pumps all my blood through working muscles?
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Ditto to KSteve's comments. Almost 10 years out and doing great! 47 at diagnosis. I feel so fortunate! My goal had been to out live my mother (diagnosed with ovarian at 46, passed away at 48), and I so hoped to see grand children. I now have 2, 3 and 1 yr old! Best wishes to all!
Jody
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santabarbarian - that was my reading of the research and I think it's a plausible explanation for some of the benefit of exercise on lowering risk of recurrence, and the studies I saw which specifically linked intensity to better results (ie runners did better than walkers). What I'm not clear about is how frequently this has to be done. It will presumably only work on a single cell. Once the travelling cells clump and lodge in tissue & begin dividing, this wouldn't work. So I'm not sure if this means it has to be every day or what? TN cells (& esp Grade 3) grow so rapidly that I fear if it's not done frequently enough, some will get through.
I do cardio regularly several times/week but I haven't managed to do it daily and I'm sort of wondering if it has to be daily to actually have a chance of working. This is one of those things that the more I think about it, I should really prioritize...
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JJ62, such an encouraging post. We will plan on being in the same place once we get through the chemo, BMX, Ovaries etc.. A ways to go yet but we will get there. Nat is IIA, BRC1, 2.1cm, zero nodes, 56 yrs old. We did have a set back due to a diverticulitis flare which she never had in her life. We will resume #3 of 4 AC chemo this Monday. Hoping her WBC's wont zero out again. Neulasta works just takes about 9 days to kick in. Thank you again Ksteve and JJ62. This is what I need to focus on!
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16 years this week I had my TMBC tumor removed. Hard to believe my youngest was just 1 at the time and now has just graduated high school. All the years since I have focused on exercise as much as I could when i wasn't dealing with other health issues. I also changed my diet a lot since that first diagnosis. Though my diet has changed a lot still over the 16 years I find I have eaten a healthy diet about 80% of the time over the years. Over the past 5 or so years I have lowered my red meat dramatically and increased my organic foods. I have started Vitamin C IV infusions after my first surgery this year to help with healing and improve my immune system and plan to keep them up to reduce my risk of reoccurrence.
I have found a love for travel sine my first diagnosis and though early on it was hard to plan trips that weren't in the short future over time I was able to make more long term plans. Good luck to everyone on this journey it has its highs and lows and I personally try and make the most of it.
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Moth any exercise is good, and the more the better. I tell myself that just doing something physical as often as possible is my top priority in life. I don’t always manage to follow through with actual activity though... I’ve just gone past 3 years since surgery, and just had a clear annual mammogram, so feeling very happy. X
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This looks good .... common tapeworm medication effective against stem cells / TNBC
https://m.medicalxpress.com/news/2019-03-tapeworm-drug-common-vulnerability-tumor.html
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Sixteen years...how wonderful, rrshannon!
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I can't recall where I found this link about a study in The Netherlands examining adjuvant chemotherapy for Stage I TNBC. I apologize if it was previously shared land I missed it. Note that this refers to chemo after surgery (adjuvant), not before (neoadjuvant).
"Benefit is most evident in grade 3 tumors and tumors greater than 1 cm and not evident in tumors less than or equal to 1 cm and grades 1 to 2."
https://www.healio.com/hematology-oncology/breast-...
Lyn
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VLH/Lyn, thanks for the link. Very interesting. They were talking about me -- grade 3, T1c sized tumor, node-negative. My MO was pretty wishy-washy about recommending chemo, but I'm glad I went ahead. I have one more AC treatment to go, then follow-up with radiation. Hoping that helps my DFS and OS.
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Good morning Ladies, so I will be getting my port removed later today. I thought I would feel happy about this and think of it as a step forward. I can only sit in fear worrying. I have my first mamo/sono on Thursday, this is post treatment and surgery. I am terrified. I feel like I consume so much tume worrying these days. I felt better when I was getting chemo. I know they say this is the new norm but it is hard.
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VBM: I had some anxiety too about my first post-surgery mammo, which was last week. I have had mild intermittent 'pains' in my breast (I think from nerves still healing and hooking up) but it was suspenseful in case that pain was due to anything bad. But my mammo was perfect-- "come back in a year"-- what a relief. I wish you a perfect clear mammogram -- and the ability to exhale and have months of relaxation on the other side!
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santabarbarian. Thank you. I have also had pains on and off for a few weeks. But my BS did warn me that it would happen. Still didn't feel relaxed.
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Hi Volleyballmom2008,
I'm jealous that you're getting your port removed today! My last chemo treatment was March 21, and I thought I was getting it out in May, but my surgeon said she didn't want to do it at the beginning of summer when summertime activities increased the risk of infection. I was extremely disappointed, but I can really understand your ambivalence about it. I too felt "better" when I was getting chemo and radiation. How weird that must sound to people who haven't been through this. You almost envy the hormone receptor positive ladies who "get" to take a pill for a while just for the peace of mind you might get from continuing treatment of some kind. So I wish you peace and calm as you begin this new chapter, post-active treatment. We're all crossing our fingers and holding our breath with you and for you!
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hi girls. My mom has 3 taxols left. I should be excited but i am more nervous.i feel like I’m more anxious than her about everything. How are everyone’s follow up with their BS and MO post treatment and posts chemo?
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Hi ucfknights,
I had quick follow-ups after the end of chemo and at the end of radiation with the docs. Because I still have my port 3 1/2 months after the last chemo treatment, I've had to have it flushed which doesn't require a visit with the MO, just with a nurse at her office. I'll see her again later this month, and then quarterly after that for a few years. I've seen my surgeon a few times since surgery on 12/10 - follow-ups from surgery and port installation - but after the port comes out in September, I'll see her every six months for a while, then annually for a while after that. Neither doc gave me a hard end date, of course. I had radiation also, and will have follow up with her, but after the 9/19 appt, I'm not sure when I'll see her again. Among these three, RO, BS, and MO, plus my OB/GYN, I'm not sure yet which one will monitor my mammograms going forward, but I'll be due for one fairly soon given that the annual mammo that started this whole thing was 10/15/18.
As I've heard from many here and elsewhere, especially among us TNs, the end of the surgery/chemo/radiation can be cause for high anxiety because we're basically left high and dry in the treatment department. There is no pill for us at this point. And no one is looking at us as regularly. I'm having some issues with my lymphedema (probably) and when I talked about it with the RO, she said "it's not cancer," knowing without me saying it that I'm scared that it is. My husband was surprised to hear me acknowledge that fear. I try to keep that one kind of hidden. No need to have my loved ones hear my (probably) irrational worry. But it's there, and (probably) always will be.
Good luck to you and your mom.
Anne
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MountainMia, I hope the chemo proves effective. I understand the MO waffling with a Stage I diagnosis, but it's good to know that chemo shows a benefit in cases like yours.
Volleyballmom, I think your experience is normal. During active treatment, we're typically focused forward on the next step to battle the beast. Then, we suddenly find ourselves holding our breath wondering if the treatment was effective. I admit that I felt lower than a snake's belly after my last cancer treatment, truly spent physically, mentally, and financially. It took all my willpower in the following weeks to drag my tired behind to PT to deal with balance issues from neuropathy.
July 14th marks three years since my first surgery and so far, so good. I hope you'll be sharing similar news in the years ahead and that you'll find that each successive mammography less worrisome.
Lyn
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PiperKay, I only saw my surgeon once after my last surgery. I saw my radiation oncologist, I think for a six month follow up after radiation, and didn’t know it was my last appointment with her. I wish I could have thanked her one last time. I have been seeing my MO or her staff every six months. After my mri and mammogram in August, I will be on a yearly schedule again. After the five year point, I will be seen at the wellness clinic unless I have a recurrence.
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2 more taxols!! With the loads of supplements and icing for the entire infusion and pre meds (about 3 hours) no neuropathy yet. BMX scheduled for aug 19. Super excited for this to be over for my mom but also super anxious and scared for her MRI prior to surgery. Any positive thoughts? I can't stop worrying that the chemo didn't kill all the cancer cells. She didn't have many SEs either which worries me
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one note about the presurgery imaging. I had “something” show up on myMRI and mammogram. My docs said it could be live cancer, dead cancer or scar tissue. I had a bit of an emotional roller coaster worrying about it. Turns out, chemo worked, but there was no way to know until after the surgery. Even if the MRI comes back with something to worry about, as another poster here said, it’s not over until the pathologist sings.
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