TRIPLE POSITIVE GROUP

Kattis894

I am beyond happy about my treatment, even the taxol because I am still alive and doing well. Considering the size of my tumor I would most likely not be doing so well without the treatment. My heart goes out to those that are not so fortunate to live in countries that provide treatment. I am grateful for those who has gone before me. Some people prefer to go the alternate route, I think there is a forum dedicated for it here as well. There are plenty of people claiming chemo cause cancer to recur which in my humble opinion is a very dangerous claim. A friend of mine´s daughter, 22 years old, refused chemo and she passed away, perhaps she would still be here with chemo. Yes, it takes time and time to recover but it is not all bad. A new take on life can be a good thing. Keep up the treatment ladys, things will get better. Statistics are always a bit of a gamble, you might be in the unfortunate 1 % so I prefer to simply think chances are much higher for a long life with treatment than without.

moodyblues

Thank you Kattis.  I have said this before as well, I am grateful to be in a country where we have treatment.  So very grateful that I have insurance and also that I live in the time where Herceptin is in place, prior to 2010, many HER2 ladies didn't survive 5 years.

Melanie

ElaineTherese

True, very true, HapB. But Kattis and I had bigger tumors than you, and have a higher likelihood of recurrence/metastases. So, we will presumably gain greater advantages from treatment than you. Best wishes!

SpecialK

hap - using my actual stats, with a 26mm tumor and positive nodes, with no therapy 69 out of 100 are alive at 5 years, 88 with therapy. At 10 years with no therapy 38 out of 100 are alive, 72 with it. I did not do any calculators prior to treatment, and did not discuss and percentages with my oncologist - I knew I was facing an uphill situation and so I have done all treatment that was available at the time, including extending anti-hormonal therapy beyond 5 years, and also participated in a vaccine trial once I finished Herceptin. I feel badly for those of you who have to make decisions about whether to endure treatment based on slim improvement percentages or co-morbidities.

Lita19901

I think the difference treatment makes between Stage 1vs Stage 2 and 3 is astonishing - it really levels the playing field. But nobody really gets a homerun with BC, not even we early stagers with treatment.

I don't think we can ever truly understand how someone with a different stage/grade of BC feels, not completely.

ElaineTherese

HapB, this is based on my stats (50 mm, with one node):

Five year survival

70 out of 100 women are alive at 5 years with no adjuvant therapy after surgery

An extra 8 out of 100 women treated are alive because of hormone therapy

An extra 15 out of 100 women treated are alive because of hormone therapy & chemotherapy

An extra 19 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab

Ten year survival

38 out of 100 women are alive at 10 years with no adjuvant therapy after surgery

An extra 13 out of 100 women treated are alive because of hormone therapy

An extra 26 out of 100 women treated are alive because of hormone therapy & chemotherapy

An extra 35 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab

As you can see, treatment makes a BIG difference for those of us diagnosed with Stage IIIA triple positive cancer!

SpecialK

hapb - not at the 10 year point for either Elaine or myself - I am 2B and she is 3A, but our outcomes are almost identical. My 10 year point is coming up in 3 years, and I will be 64 years old - I would not want those 38 out of 100 odds for no treatment.

SpecialK

hapb - thanks! I wish the same for you! The increase in the percentage of OS is dependent on clinical criteria. For you a negligible incentive allows you to discontinue should side effects become intolerable, but for me at 5 years the increase in OS is 8.1%, already by the wayside, at 10 years it is 12.9% - so it is significant. In addition to Mammaprint testing at the time of diagnosis which indicated a high recurrence rate based on the genomics of my tumor, I have also had Breast Cancer Index testing that conforms I am at high risk of recurrence. That knowledge keeps me putting that little pill in my mouth daily.

kae_md99

specialK , did your insurance pay for the mammaprint ? it was not done on my tumor. i am thinking maybe because i am her2 positive anyway and recurrence is high

SpecialK

hapb - I would take the AI, and see how it goes. Someone ends up being that 1 in 100.

kae - no my insurance did not pay for the Mammaprint. My BS was involved in a study with Agendia and sent one of my biopsy samples to them before the biopsypathology report came back. I did not sign any documents that indicated I would be responsible for the cost of the test, so when my insurance denied payment because it viewed the test as "experimental", I had no obligation to pay for it myself. The lab wrote off the fee. It is very common for those who are Her2+ to come back as high risk of recurrence on Mammaprint, and because chemo and targeted therapy is normally advised, most oncologists don't send surgical tissue samples for genomic testing.

PoseyGirl

Hapb, I know you are tortured by this, and I can tell why. You've walked the cancer road a few times. You are an earlier stage. You're darn right it's a harder decision for you. As I read in one article, an expert said that currently, treatments are like shooting sparrows with canons...that refers to you. In bc research, the drive is toward more precision medicine so that treatments are completely personalized. My guess is that we are a decade away from some big leaps in this way.

As mentioned by others here, it is more of a no brainer for us. At stage 3a, I was not going to go for any less than the full nine yards.

I have a different perspective than many, I'm sure, on whether to treat or not to treat. Once cancer is invasive, its invasive. I'd rather bomb the entire village than strike at a few targets. We just don't have that kind of medicine in place now. But because you've had other cancers, and because you're seeing stats that don't impress you, I really understand where you are coming from.

SpecialK, what was different in treatment for you when you were diagnosed...I.e. Why was it deemed an uphill battle? Wouldn't you have had the same treatments they basically have now? And Q: wasn't Herceptin in widespread use by 2006?

P.s. One thing that helps me is to read up on research. When you compare what's being looked at over the last decade versus 20 years ago, you realize that so much has been done in bc. The amount of work happening right now literally around the globe is staggering. It brings me a small measure of peace to imagine these top experts working on this as I sleep. We are moving into an era that may be akin to what the digital era was in the beginning...exponential knowledge and developments. The fax machine was in widespread commercial use in the late 80's. Email was in widespread use in 1994. Now look - kapow. Wireless, virtual reality, internet of things. If BC research is following the same trajectory with respect to human knowledge and innovation, what will the next 10 years behold? Apparently immunotherapy will take centre stage in terms of how bc is treated. I have a few neat links to share if you're interested

SpecialK

posey - node positive and Her2+ meet my personal uphill criteria, that was not something said to me by any of my treating physicians. At the time I was diagnosed I had already been surgically treated for a pre-malignant ovarian mass, uterine fibroids, a nerve sheath tumor in my right leg, more than 30 skin cancers, and many breast cysts. I had undiagnosed ADH and ALH in the pathology of the prophylactic breast at BMX. What I did not know at the time of treatment, but know now, is that my highly ER+ tumor is also genomically not particularly well controlled by anti-hormonals. The difference in treatment for me today would be neoadjuvent chemo and the addition of Perjeta based on tumor size and nodal status. Yes, Herceptin was in use at the time of my treatment in 2010.

deni1661

Specialk- wishing you many, many more healthy years! You are such an inspiration to us all.

I find all the statistics and different perspectives interesting, but also a little scary. I'm in a unique situation because of the no chemo clinical trial I participated in. My Mammaprint indicated I was low risk which made me a good candidate for the trial. I had a great response to the HP only treatments but I don't consider myself in the clear because there is no data yet to prove this provides long term DFS. My MO has told me that the AI is the most important weapon against recurrence so I am willing to put up with the SEs. I'm not taking any chances so I try to focus on good nutrition, exercise, spirituality and eliminating stress. I hope that's enough.

deni1661

Posey, good points especially re: invasive is invasive and that means forever. And you're right, better options are on the horizon. I heard on a radio talk show that scientists are predicting a cure for cancer in the next 10 years. Not sure how realistic this is but wouldn't that be wonderful.

I would interested in the links

Lita19901

SpecialK - could you please explain what you mean by your ER+ tumor not being particularly well controlled by anti-hormonals? Are you in the HER2-driven subtype?

deni1661

Kae - insurance didn't pay for my Mammaprint; the fee was waived because I was a trial patient. It's a shame insurance doesn't pay for this test because it's a tool to determine the best treatment options

deni1661

Sorry my posts are out of sequence, I'm playing catch up again.

Wow specialk you sure have had a number of health challenges yet you remain positive and unbelievably helpful to all of us. You are definitely one of God's angels on earth 😊

SpecialK

lita - I had the Breast Cancer Index testing done on my original tumor at 4.5 years into anti-hormonal therapy. This is a relatively new genomic test designed to help determine whether continuing anti-hormonal therapy beyond the traditionally recommended five years holds benefit for each of us individually. Because the testing is done on the original tumor, analyzing a specific pathway, the result provides information not only about future benefit, but past benefit. My result fell into the 10% of patients tested who have a high risk of recurrence, but a low benefit from the drugs

SpecialK

deni - that is very sweet of you to say. I try to approach any challenges that come my way with positivity, and often humor, and hope that I'm successful most of the time. I have said before, any help I provide here is my silver lining

SpecialK

hapb - this test is currently being used at the 5 year point because this time period on anti-hormonals is what has been determined to be the current standard of care. Study data, initially on Tamoxifen, indicated benefit in prolonging anti-hormonal therapy to 10 years. There are current studies looking at extending aromatase inhibitors as well. The BCI is administered by Biotheranostics, and was developed to address this question so that patients didn't stay on drugs with side effects longer than necessaryif the benefit was not confirmed. I don't believe it is currently being widely used as it is a newer modality. I think there is potential value in doing this test sooner in the process, but it may be difficult to get a physician to order it any earlier. I have seen a couple of people use it closer to initial anti-hormonal treatment, but I don't think anyone is ready to use this test as a determining factor in whether to start anti-hormonal therapy. Keep in mind though most patients will fall into a low recurrence/low benefit or high recurrence/high benefit result - and this is a test meant to guide decision making at the 5 year point. My high recurrence/low benefit result is unusual and what prompts the look back at effectiveness. It is also important to note that low benefit is not the same as no benefit.

PoseyGirl

I concur about you being so inspiring, SpecialK. I can't believe what you've dealt with. You too, Hapb.

You mentioned they tested your original tumour 5 years in?? Do they keep the tumours after excision??? Sorry to sound so clueless; we don't have this test here in Canada (so much we don't have compared to the US even though I do feel I received good care)

Cherry-sw

Today in the morning when I red this thread I thought that we all had a very productive Friday night, there was a lot to learn. I believe I said it before, I am prepared for any drug available because I want to be able to tell myself that I have done everything I could. I will start running as soon as I will be able to and will eat clean 15, buy ecological dirty dozen, I changed all my food containers from the plastic to glass with silicon locks (very cheap and good quality at IKEA, here is my chance to promote a Swedish brand). I told my husband we have to find a source to buy ecological poultry, we do not have so much of it in the stores where we live. Usage of antibiotics in meat production is forbidden in Sweden so whenever you find any Swedish sausages please be aware they do not contain any. No sugar, no alcohol, I have copied this list Posey published.

Do you know anything about eating mushrooms while doing chemo? It is mushroom season now in Sweden, the forests are full with porcini and Suillus luteus, they are so delicious. Even if I promised myself not to go into the woods because there are lots of ticks, you can easily pick a full bag because they are just growing along the pathway. According to my dietitian I can eat everything except for grape but in case you know anything about mushrooms not being good while chemo?

Kattis894

I am following the discussions of "over-treating" triple positive status and know there are clinical trials going on all over the world presently trying to eliminate some drugs, for instance chemo. I guess the results are yet not in but salut all those that are willing to be part of these trials and perhaps having a smaller risk factor gives you the certainty to do so as well.

Personally, as PoseyGirl mentioned, I just wanted the big guns. For me it was a no-brainer considering the size of my tumor 6,5x4,3 cm. The size of a Magnum Ice-cream...grown in a 2 year period in-between mammograms. The idea of not following current protocol did not even enter my mind. My fear of this horror coming back is real so reading up on diets, exercise and so forth to try to do my small part. No smoking and have no desire to have a glass of wine anymore. However being restricted to a "ketogen diet" seems overwhelmingly difficult and exercise is not my strong suit. It takes time to change.

On the positive note, I went threw an ultrasound yesterday and it was all clear...:) That means I am ready for work on Monday and feeling happy to be part of the world again but worried it will be too tiresome full-time as well.

Cherry-sw

Kattis, congratulations on the US results, it must be a relief, good luck with your new job. Cherry

SpecialK

hapb - it is certainly worth asking your MO about the possibility of doing the BCI test early, but be prepared for a formulaic response - I am reasonably sure your MO will advise you to continue AI drugs for 5 years, or as long as you can. We are not yet at the point in personalized approach to treatment where they will advise against it unless it is intolerable. Keep in mind that it is advisable to try different generics, or drugs within the class, if you experience side effects. I have done this and finally arrived at a formulation that I could tolerate.

posey - thank you, for some reason I seem to be a person who manufacturers things - I was fortunate that until breast cancer the issues were benign, other than the skin cancer which is really just kind of a nuisance. My last skin cancer diagnosis in May was a new kind, an infiltrating - not a nice word. So I had a lumpectomy to the shoulder! I have had one of those on my upper back and lower leg also. Yes, original tumor material is kept in pathology freezers - how long is up to the institution, but they keep it longer than one would think, right? I donated the nerve sheath tumor in my calf, found 18 months prior to the breast cancer, to the research department of Moffitt Cancer Center. They originally thought this was a sarcoma due to its location as the type of tumor it was is not found in lower extremities, and the prognosis if it had been was very grim. 20% 5 year OS after amputation at the hip - I was very lucky it was an anomaly instead.

coachvicky

PoseyGirl, My tissues (biopsies, lumpectomy, mastectomies) are save for 10 years. I don't know the protocol everywhere but the Customer Service POC at the pathology lab that did my readings told me that by law they had to save the tissue for 10 years.

SpecialK, I echo the others. You have been such a help to me. Thank you again.

Kattis894, I understand what you write. I wanted everything they could throw at me and my breasts gone. I understand other's decisions as well. We each must make our own decisions as to what is right for us.

I had my first Prolia injection on Wednesday. Managed a year of chemo / Herceptin with a healthy mouth. I am broken out inside my mouth since the injection. As my MO was going over the side effects, that were repeated in more detail by the Nurse when I got to "short term treatment" for the injection, I had a thought of screw this I am out of here. (Actually the words in my head were not that nice ... LOL). It is a good thing that there is six months before I go back to the cancer center. I am pretty sure I am at a place where I want my MO to leave me alone.

Have a great Saturday.

Vicky

SpecialK

coachvicky - so sorry you are having mouth issues with the Prolia injection. I have been on Prolia since 2012 with no problems and I have a very sensitive mouth - often get canker sores, and did have issues during chemo. Ask your MO about Caphosol or Mugard to use when you get the next Prolia, and maybe do the baking soda/salt rinse in the meantime. Eeesh! Hope it goes away quickly.

coachvicky

Thanks SpecialK ... I will ask!

Vicky

Kattis894

You ladys are the best. What is a prolia injection? and what is it for? sorry but never heard of it...

ElaineTherese

Hi Kattis!

Prolia helps build up bone strength and may help prevent bone mets. Those of us on aromatase inhibitors should have our bone density checked periodically to make sure that we don't have osteopenia or osteoporosis. If we do, our doctors may prescribe us Prolia or a biophosphonate like Fosamax. I have osteoporosis after 2.5 years on Aromasin, so I take Fosamax once a week.

Hope that helps!