TRIPLE POSITIVE GROUP
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KateB79, you mirror my thoughts exactly, again! I, too, wanted completely candid info when I was thinking about the whole process and looking at my options. I had ILC, so I went with TCHP after two opinions, and a third from my hubby's bff who is a gyne onc... TCHP is known to shrink ILC and it did just that, the protocol works for my type of cancer. That said, chemo was no picnic for me. I started out ok, and after round 2 my counts went wonky and my hemoglobin dropped. between round 4 and 5 I had to have a blood transfusion. DO NOT LET THIS FREAK YOU OUT!!! The reason was, I was trying to do all of my normal life stuff, and then some (I had a dear friend going through "stuff" and I was running constantly to help her. I refused to slow down and be lazy and I really paid for it. I could feel myself getting weak and wouldn't relent. I did that to myself, not the chemo. My body did not like the TCHP and I had fatigue and gastrointestinal problems, I also got some PN, but that is waning as time goes by. They probably would have been my only problems had I just done what I was told and slowed down. So when the doc says, listen to your body and rest when you need it, don't drive 100 miles, clean your friends' house, cook for her family, take care of her problems and then head home to your house to do the same thing several times a week.
That said, when I did in fact slow down, things were manageable at the end and within 6 weeks of my last chemo I was feeling great! Had BMX and was up and walking around the night of surgery and have felt good since. I had my first Herceptin only on 12/21 and that went well with only mild fatigue for a day or so, like having a cold.
KateB79 is right about gentle things for a fragile time... walking and light exercise. It does come back. I've been back at my old exercise routine, at a much milder pace, but back at it, for a couple of weeks now, and it helps. We'll see what happens after rads and adding tamoxifen. Movement is proven to give relief, so I'll keep moving...
Amstar15, makes a great point that factored into my thinking, too. My ILC became aggressive and I needed a treatment plan that would be more aggressive to get rid of it... Chemo really wasn't as bad as I thought it was going to be... The drugs they have for nausea, etc. are amazing. Especially since they didn't have them even 10 years ago. A friend of mine suffered horribly and couldn't believe what they have now...
Sending you prayers, hugs, and good mojo.... Thoughtfully consider your options and go with your gut...
Warrior On!
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33Triple,
The thing you will learn over time is that cancer in the breast will not kill you. Its the cancer that has escaped the breast that is dangerous. Having a BMX may greatly reduce the risk of cancer coming back in the breast (won't reduce the odds to zero), but it will do nothing for the cancer cells that may be circulating through your blood stream right now. Yes, cancer cells can escape the breast and not be found in the lymph nodes. Radiation does not attack these cells either. These are both local/regional treatments. The systemic treatments are chemo and anti-hormone therapy. So while mx does sound like an aggressive treatment, its really not. Some consider BMX to be an advantage because if you node are negative it may allow you to skip radiation.
I understand that you are young and worry about long term affects, however the more important fact here is that because you are young, it actually increases you risk of recurrence.
The best way to avoid long term effects is to communicate all your side effects to your MO so that they can reduce the dose if necessary. Neuropathy, for example, is one SE that could last forever if it is allowed to become too severe. I completed 6 doses of THC and finished a year of Herceptin last year. My hair grew back fine, my immune system seems normal, the fatigue has disappeared and my life is back to normal. The only lasting effects of chemo I have are some tingling toes in my right foot, especially if it is cold, and my nails still sometimes peel at the tips. I also had two ingrown toenails that had to be treated.
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Thanks ElaineTherese, Mommato3 and Tresjoli2! I'm only 44, have kids, work full time, so it's busy.
I saw some stats about only a slight advantage regarding ACTH but can't remember where (this was late last night) - but the question was really about whether if the cardiac risk outweighed the slight 1-2% advantage that was presented. Like I said, I want to make sure I treat this as aggressively as I can now to avoid potential recurrence. I know there are no guarantees, but I don't want to have any regrets either!UPDATED: Found a great and very recent video regarding anthracyclines in HER2+ Breast Cancer. Interview with Sara Tolaney from Dana Farber.
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33triple I too was so concerned about feeling like me again. Well I do. I think my immune system recovered about 1.5 years after chemo to 100% of what it used to be. I did have a little neuropathy in my left heel (numbness). That takes a long time but this fall I noticed that it wasn't there. I only notice it when there's a serious weather change. Not that bothersome and I have a job where I am on my feet. I did have a really bad issue with nails. Some folks don't but I did and got it really bad. They never fully recovered but most people would never know on my fingernails. Toenails took a harder hit. But there are ways to prevent that.
So overall I say I feel like me and I feel good.
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Fightergirl,
There are long term effects. You have to decide what you are willing to live with, and what you aren't and make decisions based on your boundaries. But as the medical community loved to tell me at the time.. you have to live with, or die with, those choices. And since we are all unique we can't really tell you which ones you will experience.
My Cons: I have heart damage that never repaired from Herceptin. It doesn't really make a difference in day to day life, but I was a life long athlete and took a really big hit in performance. My fitness level was so much a part of ME, that I struggled a great deal with just not being able to do as much as before, or be as strong as I used to be. (Though this happened about 3 years out. The first 3 years after treatment, I stayed strong...but lack of estrogen and damaged EF really took a toll long term.) Since I am post-meno now, I've lost bone mass...hair thinner, poor sex etc. I went more strength training and less cardio because of the heart issue, but it caused some serious spinal issues and I had spinal surgery in July.
Here is the mental process I went through before chemo.
When I made decisions, I had to "get real" with myself. Was I asking REALLY what can I live with in a "new normal?" Or was I asking REALLY how can I keep my current standard of life?
I'm not ashamed to say, at first the latter was where I based most of my decisions. IMO it's a form of denial. I refused to believe the "standard care" was good enough...I mean HELLLO!! I'm unique, my cancer is unique, I can BEAT THIS! Um, yeah. I considered finding an Onc that would give me only Herceptin and Tamoxifen...that's it..no surgery, no rads, no chemo. (What? lol I was new to the research at that time! And NEVER woulda found one
Once I accepted life had hit a 90 degree angle and things were NEVER going to be the same again no matter what I chose...THEN and only then did I start making decisions based on "what can I really live with?"
For me, turns out it was more than I thought
Woot Woot. The part of my identity tied up in fitness and being the fittest blah blah blah, died slowly...I'm still fit and work out, but I'm about 5 pounds heavier than before chemo. I don't love it, but I'd have to face it eventually with aging...sooooo big whoop. The time not being so fit freed up gave me the opportunity to start a non-profit and work 70 hour weeks for almost 3 straight years doing something I loved and could never have done with my prior fitness activities.You asked about health as far as getting sick. I literally almost died with my first chemo and spent 5 days in the hospital. I've been sick exactly ONE TIME since finishing chemo. Once. Even though my diet has been horrible some weeks, stress levels through the roof, and lack of sleep.....so maybe...just Maybe it gives us super powers
I don't know if this helps you at all...but no matter how much your boobs seem important to you now, or your hair, or (insert concern here)...I can attest to the fact that 5 years out, looking at all the things I've accomplished since tx, I can't even believe I placed value on some of those things when weighing TREATMENT....and ever even considered doing less than full kitchen sink for them. But, that's me. Those are my boundaries. And honestly, I think for me having decisions to make about size, shape, surgery etc was the parts I could control ....so I got into it.
You have found a great community of support here.
Best,
Tonya
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TonLee - thank you!
The ONLY Thing weighing on me regarding treatment right now is survival and eliminating as much risk of recurrence as possible. I want to see my kids graduate high school and be able to dance at their weddings. That's what I want. I don't care about my boobs or hair or how sick I'll be during treatment, I know I'll get through it physically and mentally. It certainly is a personal matter regarding treatment choices, and it's a difficult process, which is why I have spoken to a number of doctors. Only yesterday was I actually reassured that I was speaking to a doctor who wanted to cure me. I canceled my first chemo treatment this morning (scheduled for Thursday) with the local hospital because I decided I was going another route, albeit being over an hour away. When that local oncologist called back responding that they could do the same treatment here, I explained that it wasn't about the TREATMENT, I wanted the DOCTORS. Anyway, I'm ready to get this show on the road!
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I did TCHP, but we had to lower the doses for Carbo a few times and eventually dropped it. We also had to switch from Taxotere to Taxol and later to Abraxane and finally dropped that as well. There are meds to counteract side effects and your MO can manipulate dosages too. I did end up with neuropathy--it is improving in my hands, not in my feet...yet. My MO expects it to. We did the best we could.
If you are wanting to go conservative--and this is my opinion--ask about THP. Ask 2 or 3 MO's. If they all agree you need to at least try it with Carbo, try it. And then go conservative with surgery. Do the Lumpectomy with radiation. You can always take more, but once the breast is gone you can't get it back.
I had a complete pathological response with chemo--tumor GONE! Even with all the cutting back we did. It was hard on me--I was useless during chemo. But I am getting stronger, feeling better, and looking back I would not trade my result now. And you will have lots of support here! The best! -
I did the standard treatment AC then Taxol with Herceptin and Perjeta, continuing the Herceptin and Perjeta for the year. I had a lumpectomy and after chemo had an axillary lymph node dissection. I had 6 weeks of rads too. I am doing well having finished treatment in mid - October. My PET scan showed no evidence of disease. The only lasting effects are neurpathy in my feet and fingertips. I also still have some soreness in my radiated breast. Hopefully this will resolve in time. I would choose this again if I had to do it over. I have severe arthritis in my left hip having nothing to do with my cancer treatment and I'm scheduled for a hip replacement in mid - February. By the way I am 72 years old and managed to get through the standard protocol of treatment without too much difficulty. I was never nauseous. I did get tired, needed to rest often and had some taste issues during Taxol but these resolved quickly once I finished. It's the chemo doctors job to get you through treatment so be sure to let them know about any side effects. It's scary at first but you will get through this one day at a time. Love, Jean
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zjrosenthal - sorry to hear that you need a hip replacement, but I am sure you will feel better after you get it done - you are spunky and tough, hoping you come through that surgery with flying colors!
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Musosgirl and zjrosenthal… thank you! got the call from the new oncologist this morning she presented my case the the tumor board yesterday and recommended to switch it up a bit, treat with Taxol, Herceptin and Perjeta first, then AC after. Then surgery again. They are basically looking at this almost like neoadjuvant therapy although I had a lumpectomy already. The docs are in Boston, so I trust the decision. I might even start tomorrow, I'm waiting for scheduling. This sounds twisted, but I'm actually excited to get started.
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sounds like a great plan to me
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Due to my family history, when my MO told me I needed chemo, I jumped up and pumped fist. LOL said yes and smiled. He said" um, that's not the reaction I usually get"!!! LOL. Well, my Mom never got chemo and I was prepared to fight for it I was so glad I didn't have too. Even though I was one who had a few issues, Diarrhea was a it one. Not fun. Had some neuropathy. But also was hospitalized too. I had to cut Carboplatin. Then had to cut taxotere too. Herceptin had to be cut because of heart issues but have since recovered my EF. And I asked if it would still work on my cancer as i thought it might be weak. My MO said "You have to be ALIVE for any of this to work! " um. Yeah. So it is the right thing to think about it. don't let fear stop you from doing it if you want it .
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I just found out I was also misdiagnosed at the biopsy stage. I was diagnosed triple positive and my oncologist started me right in on adjuvant chemo of Herceptin, Perjeta and Taxotere, which I finished and then had a mastectomy of my left breast. My surgeon also removed all of my lymph nodes on the left side of my arm. During surgery, however, the analysis of the cancer that had gone into one of my lymph nodes tested HER2 negative. The original biopsy test was performed at a diagnostic center close to my home, but I was sent to another hospital in a larger city. This hospital has an excellent reputation and I felt very comfortable in their care. When I was told about the discrepancy, I asked my oncologist to re-test the original biopsy (the term for that material is "blocks") and he said he would, but was not super excited about it. My breast surgeon, however, was on it immediately and also sent all samples to an independent lab for confirmation. The results showed that the original biopsy was incorrectly diagnosed. They mistakenly found the IHC test to be +3 (on the most positive side of the scale) so they skipped the FISH test. If they had done the FISH test, they would have questioned the IHC test. Unfortunately, no one along the line questioned the HER2 +3 diagnosis without a FISH test and I had an unnecessary round of chemo. I am now looking at a new round of 2 months of bi-weekly chemo for the correct diagnosis, followed by 5 weeks of radiation, 5 days per week. Given my correct diagnosis, I should have had surgery first and then chemo, followed by the radiation.
Moral of the story: Get a second opinion of the biopsy to confirm breast cancer sub-type. I would never have imagined this possibility when first diagnosed, as the concept of breast cancer was so daunting. I hope this helps someone.
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ginnydeering I am newer to this journey as I am only 2 TCHP treatments in. However I can tell you that my Her2 status was different every time they tested it. I had a equivocal IHC, then a positive FISH, then I had an oncotype run, and apprently that said I was her2 -. Of course I was freaked out because that negative result came in after I had already started. I had talks with both the surgeon and the MO and they re-ran it (just IHC) and it was positive. They explained to me that its very dependent on what slides are looked at, as by design a tumor is NOT uniform at all. So there may be parts that are her2+ and parts that aren't. They both strongly re-iterated that ANY her2+ results should be getting the herceptin therapy. Not sure if that makes you feel better or not. I hope it goes well for you!
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Ginny, what Sammy said. Hugs
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Hello ladies,
Thanks so much for all of your feedback! I had my port placed yesterday...feeling a little sore but doing well otherwise. I'm going in for a second MO opinion Thursday. Dr Amelia Zelnak specializes in Her2+ and has authored an articles that suggests our over-treatment. I'm lucky she's close by! I figured she could answer my questions and help me feel more comfortable with the idea of chemo. Your comments have also helped!
Have you ladies found any complementary treatments helpful i.e.: Vitamin c infusion, acupuncture, etc?
Thanks so much!
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Trip, at my center they offer Rieki free with volunters. Acupuncture is also available at reduced prices.
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Happy New Year my lovely triple 3's!
Just stopping by to say HI - haven't been on in awhile but love this thread and try to read and update as often as possible
Im 4 years out from the end of rads and in August will be 5 years since diagnosis - I cant believe it. In some ways it feels like yesterday in others in seems so long ago (which is great)
TonLee so nice to see you here again...im sorry you are struggling with some post treatment issues but seems like you have put them in to perspective and you have accomplished some great things post cancer - !
as for long term issues, SE's etc. My immunity is fine, back to normal. In fact my hubby has Shingles right now, not me. My residual cancer crap is due to my recon surgery - but I manage. I have a bit of neuropathy but only when its really cold out. All in all not bad considering all we have been through
as for OS and Tam - I have been shut down since Dec of 2012 - I tried switching to an AI but I couldn't tolerate it. I am temporarily off the shots now to see if I am finally post menopausal (just turned 47 ) if I am still not I will go (reluctantly) back on the shots but Im hoping these ovaries are done. I will try a switch to an AI at one point - since it looks like its 10 years of hormone therapy for me
hello to all the newbies and shout out to Lago, Special K and Moon who were on this thread when I signed up in 2011
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Love hearing these stories thanks rozem for posting! It helps so much!
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Hello ladies, got a 1+ (negative) score on my Her2 test results during original biopsy. Got a 2+ (equivocal) score on my Her2 test results during MRI-guided biopsy when a lot more samples were taken. Got FISH results today and turns out I am confirmed Her2-negative. However, my BS says the entire mass will go to pathology for testing again after surgery/removal. So if I am indeed a 2+ (equivocal), what is the course of likely action? Herceptin or no Herceptin.
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33trlple. Do not take any supplements without your oncologist's approval. Some can counter the effects of standard treatments.
Op4life the surgical pathology will confirm. The will send of for FISH test. If not demand it.
BTW I'm over 5.5 years from diagnosis. Almost 5 years from last chem
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what is the formula to prevent burns and when do you use it? I was a redhead with freckles too.
Thanks.
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Lago, thanks for the input. I am hoping and praying that by the time I get to surgery, there is not a lot of 'mass' to test. Big congrats on being 5 years out! I imagine that has to feel just grand.
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I know I've asked this before, but I'm going to ask again. For those who still have a natural breast, how often do you get scanned since treatment?
I'm 3+ years past dx and 2 years out of finishing herceptin.Mine plan is currently alternating a mammo and an MRI every 6 months. But every time I have one I get a call back that thank god has been B9. But it's so stressful to have to wait for another scan and another set of results. Also my breasts are still dense so don't really feel mammos are worth it since they don't pick up anything ever. Would one MRI per year be enough?
Would be interested to hear what others are doing.
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I'm getting mammograms every six months. MO has said something about annual MRIs but not lately. I guess mammos don't bother me too much, but then again, I don't have dense breasts.
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I'M once a year for mammogram both breast and NO scans, No MRI nothing.
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I get a mammogram once a year on my left breast. My gyn had suggested alternating between a mammogram and an MRI every six months since my breast is extremely dense. That isn't something I want to do. My risk of developing a new primary in the other breast is low. Especially since I'm on Anastrozole. I did speak to my MO about it. She said she was fine with just a mammo every year until I stop Anastrozole. Then she recommends some type of imaging every six months. Of course, that's assuming my breast stays dense. Will it ever change?
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mommato3 - I don't have mammos since I had a BMX but I can say that I had extremely dense breast tissue despite a total hyst/ooph (so a very decreased estrogen supply) at 45, nine years prior to diagnosis with breast cancer. I was diagnosed at 54 still with extreme density. Mammography did not see my 2.6cm palpable lump, but it was clearly seen on ultrasound. For some of us the density does not dissipate, but for others it does - not sure why that is. Was your cancer seen with mammography?
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My cancer was seen on my mammogram but it was already a decent size. I was 41 when diagnosed and I skipped my mammo the year before because I didn't have any risk factors. My husband was temporarily working in another state so I decided to wait until the kids and I moved too. I did have a baseline mammo and ultrasound a few years before that. It didn't show anything. BUT we didn't get a copy of the previous one to compare. This year my gyn had me do a mammo and an ultrasound just to make sure everything was ok.
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Momwriter - I get an annual mammogram and last year they said that I should alternate at 6 month intervals with breast MRI on my remaining, natural breast. I have a lot of pain in my sternum, left over from treatments (mostly rads), so I'm choosing not to have the breast MRI. Mine pre-diagnosis was really painful, and I'm pretty sure that it would be more painful now, and I'm not really up for that. So I've just been doing the annual mammo, and I do have dense breast! I'm more worried about recurrence in my bones, brain, liver or lungs.
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