TRIPLE POSITIVE GROUP

Lita19901

Kim, that's really lousy that you did all that and still recurred! On the other hand, it didn't take up shop somewhere else, which is the bigger thing

Lita19901

Specialk, I WISH I could have talked my doctor into a Mammaprint, for the Blueprint results, but oh, well.

SpecialK

hap - I was commenting on your post from 3 hours ago when you were responding to Elaine about early stage, not about the Predict stats. I didn't want other readers to infer that early stage only includes others with your same stats.

Also think it is important to note that KimCee is not experiencing a recurrence - her current cancer is in the other breast, not the original location, and is Her2+, her tumor 18 years earlier was not. Those two things, combined with the time between occurrences, would classify this as a new primary.

Lita19901

Specialk, but aren't the anti-hormonals supposed to stop BC in the other breast? Or does that only apply whileyou're taking them?

KimCee

Lita, I like the way you think. Prefer this over setting up shop elsewhere for sure.

Even though I am a nurse, SpecialK knows way more than I do regarding any of this. I knew it was a new primary, and my oncologist referred to the Femara as a fail. So, I will defer to SpecialK for your answer to the post above, but based on what my MO responded, sounds like I should not have gotten a new primary due to all the tx I had 18 years ago. I tend to fall in those small percentages, therefore, stats don't mean all that much to me in the grand scheme of things

Hap, I may be way out there but I swear stress is a factor in my new cancer. I have great resistance, hardly get sick despite being around sick people, knock on wood, but twice in my adult life I experienced a major, stressful, horrible situation that knocked me down physically and emotionally. I swear it has something to do with it. As crazy as that sounds, I am a believer.

KimCee

oh, Lita, I remember my first MO saying later on in my follow ups that the benefit of the AI lasted after you stopped taking them. I don't remember the years he stated but it was in regards to a study

SpecialK

hap - a recurrence would occur in the same breast as a previous cancer, and with the same hormonal receptors and Her2 status, or would be a metastatic spread of the original tumor. Occasionally you will see a cancer reappear in the same breast, or in nodes on that side, that has a change in hormonal receptors. This sometimes happens if the patient has had aggressive chemo, but I believe the new tumor can be tested with genomics to see if the cancer is indeed a recurrence in that case. Because tumors can be multi-focal in the same breast it is also possible that a new tumor in the same breast could have differing receptors and Her2 status and not be a recurrence of the original, and was present at the time of the first diagnosis but too small to image. This scenario would be more common with lumpectomy since mastectomy removes the majority of breast tissue - but not impossible for mastectomy since you can't remove 100%. Also, tumors are not homogenous, but in the case of ER+ patients the receptor percentage result is a sample of 100 cells and the number that stain positive gives you the percentage of positivity - however, another slide may result in more, or less, of the cells containing a receptor. ER- patients have no receptors. There is some variation in what level of ER+ can be treated as a negative - some feel that less than 10% should be treated as ER-, or the weakness should be factored into treatment decisions. Her2 status is tested somewhat differently, and it is possible that some parts of the tumor in the breast may not appear positive, or as strongly positive.

Lita - yes, anti-hormonals are supposed to stop a new cancer in the contralateral breast, but that is not absolute - the drug(s) can be ineffective or the patient can acquire resistance after a period of time. There is a carryover of an unspecified time after discontinuing anti-hormonals, but this would vary from patient to patient. In Kim's case she had stopped taking anti-hormonals for a fairly long period before her new primary occurred - it seems she took them for 9 years, which is actually a long time considering how long ago she was diagnosed - the data for longer term use wasn't really in yet, and her new cancer came almost 10 years later. Do I have that timing correct Kim?

Kim - I don't think there is any question that stress wreaks havoc on the immune system, which is what keeps many cancers and potential cancers, in check. I don't have any doubt either that stress can be a factor.

KimCee

SpecialK, you have my timing right. My oncologist and treatment center in NJ was a teaching hospital and research facility. It seemed he did things ahead of the gold standard back then. I was on pills a lot longer than my webmd breast cancer thread BC friends at that time.

Right now my MO is sort of pushing nerlynx. I may be wrong but the stats just don't overwhelm me to say yes. I have time to decide but leaning towards saying no.

SpecialK

Kim - yes, your MO seems to have been ahead of the curve on prescribing anti-hormonals longer. I wonder what the effectiveness was for your original tumor - I had a BCI test on my tumor material from 2010 - it revealed that I fall into the 10% of patients who have a high recurrence risk and a low anti-hormonal drug benefit. The BCI test was designed for making decisions for treatment beyond five years, but since the test was done on the removed tumor my assumption was that I had been receiving low benefit for the initial five years, as well as dubious benefit going forward from there. My MO has asked me to remain on letrozole as long as I can tolerate it even in light of that test result since low benefit does not mean zero benefit. I am currently taking a break and want to have E1/E2 estrogen testing done to look at my estrogen levels from androgens being converted by aromatase into estrogen. If they are low enough that they fall into the desired range while medicated with anti-hormonals, I will not resume. If they are higher I will go back on for the remainder of the 10 years - which is up in the summer of 2021. I have been off for several months - long enough, I believe, for the washout - I don't feel appreciably different so I don't mind going back on.

KimCee

SpecialK, I would love the answer to the question regarding my original tumor. I never heard of this test either, but am going to ask my new MO. I guess when you get the results that your tumor is 100 % estrogen positive, it has nothing to do with how well it will respond to AIs? Boy do I feel uneducated on this front.

SpecialK

hap - aromatase inhibitors assume that you are post-menopausal - so age is not really a factor and those of us taking them should not have very much circulating estrogen. The amount of estrogen per individual does vary and is influenced by a number of factors, including percentage of body fat. Here is some info on the testing, and normal values. Most MOs do not test for this since 5 years of anti-hormonals are standard of care, based on trial data. I am 18 years surgically post-menopausal, had enough symptoms to know I had very little circulating estrogen prior to diagnosis with breast cancer. I have never had the type of side effects you experienced on anti-hormonals, so I don't know whether existing estrogen levels are a factor or not in how these drugs are tolerated. The standardized dosage was derived by trialing a variety of doses for safety and efficacy when measured against other anti-androgenic drugs to determine a tolerated and effective dose. Is it truly one size fits all? No, but most oncologists are unwilling to deviate from the norm.

https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/84230

SpecialK

kim - here is a link to the BCI test. I am 96% ER+ and apparently one of the small percentage who do not derive much benefit - so I do feel vulnerable. Higher ER+ percentages generally are more responsive to anti-hormonals, but again, not an absolute. In light of your second diagnosis it might be worth it to have this test done prior to the 5 year point. It is also surprising how few people really benefit from extended anti-hormonal therapy. The test was not covered by my insurance but this lab, Biotheranostics, has their own insurance appeal department - they will handle all appeals and if exhausted and still denied, they do not charge insured patients. If patients do not have insurance, they have a patient assistance program to reduce the cost.

http://www.biotheranostics.com/patient-breast-cancer

SpecialK

hap - you can ask your MO, GYN or primary care to order the E1 and E2 estrogen tests to help determine how much estrogen you have in an un-medicated state. If it is low enough you may not need to suppress any estrogen. You can also ask your MO to order the BCI test now to determine your recurrence risk and drug benefit, rather than waiting for 5 years. Be aware though that this test is not particularly mainstream yet and if you are being treated at DF, your MO may be resistant as this test was designed for Her2- patients which can skew the results to high recurrence risk, but should not interfere with the assessment of anti-hormonal drug effectiveness.

KimCee

Thank you Special, I am definitely going to inquire.

Lita19901

SpecialK, you said that you had enough symptoms to know that you didn’t have much estrogen in your system - can I ask what they were

coachvicky

Shelabela

PosseyGirl nailed it. Also, if you need help, get it. Maybe your survivor counsel will help.

I am not fond of the word survivor. I did not survive ... I have thrived!

I thought once I passed the diagnosis anniversary, the mastectomy not anniversary ..., I would get back to normal. I told my MO Team not to use the term "new normal" with me. I don't like that term either.

I looked at some pictures from before diagnosis and I realized I will never go back. I won't look the same. Be the same. Our pastor said last Sunday in his sermon tha 65% of people experiencing a life changing event and knowing they must change (i.e., having a heart attack and chaning one's diet) will not changed.

I thought about that. Unlike other health issues, breast cancer is visible to us daily. Our physical changes last forever. Dang it! For six decades Iparted my hair on the left. What happened that it parts on the right nowadays? I know this is petty but it is something I can not go back to.

So, I look at this woman in the mirror and I am working to understand who she is. Some of the old Vicky is still there but there is a new woman. I like her better. I am kinder and happier. With each anniversary I work to see my progress. Each anniversary gets away from the severe meltdowns. They are getting easier and more of a celebration.

Stay strong.

Vicky

SpecialK

lita - many very wicked hot flashes a day, night sweats, fatigue, insomnia, modest weight gain - vacillating between 5-10 lbs, thinning dryer hair, some increased joint pain and increase in the discomfort from pre-existing degenerated disks in my lumbar, mild osteopenia and a dramatic increase in total cholesterol - between lipid panels went up 100 points.

PoseyGirl

One of the reasons I'm having a hard time managing my emotions is the unexplained symptoms I'm having. I have some anemia they are tracking (my hemoglobin is better than the blood work before, but it's still below normal. They checked for myeloma patterns and saw none). I have back pain that is persisting in my upper thoracic and now lower lumbar. I've had both a bone scan and an xray (for the upper thoracic), both of which showed nothing. I get chills quite often.

I'm concerned about this pain in my spine. Could this be letrazole? Zometa? Does it make sense that newer locations of pain would a) show up months after starting Letrazole - 6 or 7 months later! or months after my first Zometa infusion - I've had 2?, b) stay in the same spot(s) for a persistent amount of time? I've had the upper back pain for 6 weeks and the lower started in 2 weeks ago. It's unlike me to have persistent back pain, so I'm getting worried. I feel like I should now ask for an MRI.

So the constant symptoms are bringing me right back down. I'm struggling. I'm not sure the emotional struggle is a direct link to the treatment. I believe it's related to the above - just constantly feeling vulnerable.

PoseyGirl

thanks, Hapb...I didn't realize that Letrazole created back pain as much as other joints. I appreciate your input; could symptoms arise months after starting, you think?

Milolove

Hi everybody! I am a triple + too. I was diagnosed last May. I had chemo first then double mastectomy last December. The pathology report showed 1 out 22 lymph nodes with cancer and one extranodal extension. I will start radiotherapy for 5 weeks soon. I would like to know whether somebody had an extranodal extension and what treatment they had. Also I would like to know whether any of you have a diet or tip to help in our situation. I read that turmeric, pepper and olive oil might have the same effect as Herceptin but they can not be taken together.

Thanks to all.

shelabela

Vicky, i agree... i am not a survivor but a fighter for life. The clinic i go to has that survivor clinic counselor and its sorta like a question session, they go over where you are in diagnosis, talk about diet, exercise, what to expect next, how to move forward wth your new body, they also talk about acupuncture, massage therapy.

It is also the time they bring all the test results to the table and go over them. The appointment is 6 hours spilt in 2. Be a long day

coachvicky

shelabela

That 6 hour appointment split in 2 sounds WONDERFUL!

I would have greatly benefited from this structured approach that appears to look at the big picture.

Let us know how the appointments work out and what you learn.

Vicky

deni1661

coach - I like your post. I tend to use "cancer warrior" because that reminds me to fight and fight hard! I am grateful to say that cancer changed me for the better and I don't ever want to go back to who I was before. I am healthier despite the SEs from the AI and in a much better place mentally. I am more patient, calm, aware, stronger in faith and happy most of the time. While I am still recovering from the last revision surgery, I have high hopes that my body will once again feel "normal". It already looks much better than before diagnosis but I'm still working through the sensations from the DIEP surgery. My MO said something similar to your pastor i.e. most of his patients don't change their eating habits or reduce stress. He is a firm believer in building the immune system to fight off cancer without drugs. I appreciate that approach and work very hard at achieving that goal each day.

specialk - thanks for the great info on estrogen and that testing is available. I am very interested and will be asking my MO about it at my next visit.

posey - I'm so sorry to hear about your pain. I think when you are in a constant state of pain with no break, it wears you down and impacts your emotions. I don't typically complain about my pain to anyone other than in this group but there are times when my husband will ask me "you seem kind of down today". Most times it's because I didn't get enough sleep and I am just so tired of the pain I want to cry. You have a lot of other things going on too so it only seems logical that you are feeling down. I have had tailbone pain for almost 9 months now and it is very difficult for me to sit longer than an hour. My MO did an MRI and it didn't show anything; I think it would be a good idea for you to ask for one too just for peace of mind. That might help with your emotions a bit, at least I hope it does. Hug

Shelabela - your program sounds awesome. Yes please share any tips you learn.

Stress.....yes, I think it ruins your immune system and seems to be a key contributor to cancer. My MO asks at every visit how my stress level is and he has told me more than once how it impacts estrogen production. He told me even good stress produces estrogen and can also impact the immune system. I meditate every night and take walks around the building at work to get me away from the stressful environment surrounding my office. I am much, much better at managing stress than I was in my pre-cancer days which is another positive I can take away from all this

Milolove - welcome to our group, sorry you have to be here but you will find lots of great support and information. I follow the same diet as Hapb described, most of the time. I do allow myself a treat here and there. I feel a whole lot better since adopting this style of eating. Especially getting rid of sugar. I believe that is the number one thing that can make a difference in how you feel and help keep disease away. I use a lot of essential oils but have not heard of the combination you refer to in place of Herceptin.

PoseyGirl

Thanks, Deni, for your sweet message. I don't think it's the pain that is upsetting me (it's really not much). It's the awareness that I feel an aching in the same spot for weeks. I've had the bone scan and an xray and last night (at midnight!) an MRI. So hopefully all is ok.

I wanted to let you ladies know of a link that popped up on my FB feed. It is www.lisaschwarzmd.com. She offers workshops or videos on nutrition for women after breast cancer treatment. She deals with all the questions and possibly conflicting questions that we all face on this topic. I know we've talked a lot about this on this thread, so I thought I'd mention. I've signed up to receive notification of a next video or workshop (not quite sure how it works yet). So you can go into her site and sign up if you're interested.

It's freezing cold here as I know it is over most of North America. Hope you're all staying bundled up. I have to walk my dog three times a day because of some leg surgery she had about 10 weeks ago. While I grumble like crazy about it, I'm glad I'm totally forced to walk. I am up to an hour a day doing this rehab thing with my dog, which is good since over the past few weeks I fell off the wagon of my exercise stuff (which will resume this week).

Tresjoli2

Posey, my MO kept me on tamoxifen because she was worried about bone pain and bone density with an AI, even though I was technically postmenopausal with the Lupron. It was n option for me, but I was stage 1 so not sure if it's an option for u.

Shelabela - I was wayyy worse after treatment and my 1st anniversary than before. When I was in the thick of it I was a brave warrior...then it was over. All I had was a shell of the body I had before, lost my dream of having a third child, and felt so lost....im creeping up on my third anniversary, and I'm still trying to put it all back together. Be kind to yourself and we will all be right here with you...

Tresjoli2

Posey, my MO kept me on tamoxifen because she was worried about bone pain and bone density with an AI, even though I was technically postmenopausal with the Lupron. It was n option for me, but I was stage 1 so not sure if it's an option for u.

Shelabela - I was wayyy worse after treatment and my 1st anniversary than before. When I was in the thick of it I was a brave warrior...then it was over. All I had was a shell of the body I had before, lost my dream of having a third child, and felt so lost....im creeping up on my third anniversary, and I'm still trying to put it all back together. Be kind to yourself and we will all be right here with you...

KimCee

Oh I don't like that article Hap, but I see myself and feel myself aging daily. Sucks.

Blownaway

Hap - sounds about right. They save your life by destroying your health. I feel I've aged 10 years since diagnosed in April 2014

PoseyGirl

Hapb, thanks for the reply...I appreciate your caring input. I still haven't heard back from the MRI. I actually am not in much pain. It's really more about the fear and anxiety that comes with anything persistent. Tresjoli, thank you too . I really do want to stay on the AI...I had my ovaries out so I could do that and had based that decision on thinking that the AI might be a better bet. I didn't think Tamoxifen would be any option for me anymore

Here is a blog post I read and it really resonated with me. I have shared it on my local bc FB group and I think most really felt it was bang on. This lady is a great blogger; I've see her entries before.

https://m.huffpost.com/us/entry/us_57f18712e4b07f2...

moodyblues

Question.  I know the answer but, I wanted your perspective on it.  Trying to explain to someone who is having a difficult time understanding the why.  Maybe a different way of explaining will do.

BC stage 1 Triple Positive.  Mastectomy, chemo, Herceptin and estrogen blockers.  You do not have any lymph node involvement.  If the cancer is gone why the continued treatment of estrogen blockers for years?  The cancer is gone, and we're treating it as if it were still there, the mass is no longer feeding off of estrogen.....why are we being treated as if it were still active.

I have explained the lymphatic system etc.