TRIPLE POSITIVE GROUP

SpecialK

hap - this study included stage 1 and 2 patients who were Her2-, and the use of genomic testing like OncotypeDx to determine whether chemo would benefit. It is not new, but instead the expected outcome of refinement in determining who needs chemo based on genomics rather than a clinically based decision based on staging information only. This study represents progress, but I am not sure I would call it a trend - rather, it is the result of the use of improved diagnostic tools.

SpecialK

hap - yes, good ones!

Suburbs

deni1661, I am convinced that the DIEP surgery is even more complicated after chemo and, of course, even more so with a triple positive diagnosis and extended therapies. I am counting my blessings having had immediate reconstruction. We'll get there with time and as you say lots of patience. Sending healing thoughts.

Cherry-sw, thank you for thinking of us. You are doing great and so close to the finish line for the really tough chemo part. Herceptin only is really a walk in the park compared to other therapies when cardio toxicity is not an issue. What a trooper! It's amazing that you could function with such a low blood pressure. Early on I was annoyed with terms like warrior and survivor. I just wanted to get over with everything and resume my life. There is so much truth in those terms. I see that now. And while you have low BP and are nauseated, thoughts and words may not be too comforting, but, rest assured and believe it when I say that you might hardly remember the really bad days. You will just marvel that you made it to the other side.

SpecialK, as always, you have all the relevant info at the ready. You have taught me so much on this topic. I appreciate all your posts.

Coachvicky, thanks for your continued inspiration and fighting spirit.

All, I can't believe 2017 is nearly over. I would have never made it without my family and friends and this board. Thank you

rljes

Hi Everybody!

Thx HapB - for the suggestion for PBS binge watching!  things are getting a little boring / -14 degrees out windchill and my relatives have a cold, so I'm stuck at home by myself. Which usually doesn't bother me - but  I'm getting a little restless. 

toughcookie_21

Hello all! It's been a while since I've posted here. I have a question regarding Herceptin costs and assistance. Has anyone received copay assistance from Genentech? How did it work? I don't know if I'm reading the information on their website correctly, but it looks like they offer $25 per treatment up to $25,000 per year? That won't really help me as I'll use up my deductible in the first treatment and will still owe my $10,000 out of pocket for the year. Based on what I've seen from my chemo treatments this year, my hospital bills the insurance company approximately $29,000 for each Herceptin infusion. Does anyone know if there are other options to help pay for this? On top of the stress of starting a new year with a new deductible, my employer also switched insurance providers and HSA banks, so I'm dealing with that as well!

I'm happy to say I made it through my 6th of 6 TCH treatments on December 20. Christmas was a bit dicey, but I got through it and am looking forward to getting stronger every day. Hope you all are doing well!

coachvicky

Thank you Suburbs ... this is such a great group of women.

Vicky

Lita19901

toughcookie, are you saying that Herceptin, which is given at the hospital, is being billed to you as a drug?f I thought medical insurance covered stuff you took in hospital, and drug prescription insurance covered drugs you take at home.

Suburbs

Toughcookie, ouch. That is a high out of pocket. My last Herceptin will also cover my deductible and put me over the top for my medical out of pocket limit as well. I would ask at your cancer center to see if they can help reaching out to Genentech. Also, you could ask about help available from the American Cancer Society or other local resources. Congratulations on getting through TCH 6. You will soon turn a corner and every day you will feel a bit better.

LTWJ

toughcookie, are you sure the $29,000 is just for the Herceptin and not the whole chemo treatment? My last round of chemo cost $49,000. I am billed $7400 for just tne Herceptin infusion which I get now and my insurance pays $3,000. Is that your whole family deductible? When we were on Obamacare our deductible was$13,000. That was for our family, there was no Indiv deductible. I get insurance through my job now and we have Individual deductibles.

shelabela

toughcookie, i thought i understood it that all you would pay was $25. I had to switch insurance in the middle of my treatments and my first ins paid the General 85% of it after deductible meet. My 2nd ins paid all of it. They grouped it under "needed immunization " ??? Wasn't gonna argue.🤔

When i have herceptin alone the bill is $21000. That's broke down :$650 for chemo chair, the rest for the drug alone so yeah its spendy.

toughcookie_21

sorry maybe I didn’t explain correctly. $10,000 is my family out of pocket max. I met it last year before they started paying 100%. They had been paying 90% after meeting my individual deductible, which is $6,000 but then my husband got kidney stones and ended up in the hospital so we soon met the out of pocket max. It will work the same this year. I’ll meet my individual deductible of $6,000 and then insurance will pay 90% until I get to $10k and then they’ll cover 100%. I am on payment plans for all the charges from 2017 and I hope that I can add the charges for 2018 to the same payment plan, but it’s doubtful. It was a nightmare getting all the individual bills consolidated, and I ended up with 4 payment plans total.

I re-read the info on Genentech’s website and it looks like I pay the $25 and they cover the rest. I called the oncologist office to find out what my options are and to get the actual cost of just herceptin. Regardless of the individual cost, I’ll quickly meet my out of pocket max in just a few treatments and I still need exchange surgery and an oopherectomy. The bills will just continue!

I had a choice for a lower deductible through my work and after running the numbers, believe it or not, it seemed that it would cost me more with all the things I still need done. I think it will be a better option in future years, but the lower deductible choice covers 90% from the start but still has a $4000 deductible before covering 100%. Medical costs in the US are absolutely ridiculous. To think that my decisions for medical care are partially driven by cost is astounding. I honestly never really considered it because I’ve never been sick before, I didn’t even have a primary care doc!

Sorry for the rant. Happy new year everyone! Here’s to a better 2018!

Cherry-sw

toughcookie21, this is not a rant at all. I had no idea that those who have medical insurance still have to pay that much as deductibles. At least I thought that people who had medical insurance were better off when they got sick, but all these astronomical figures you still have to pay even if you have been paying to insurance company for years.Medical care insurance in US is a disgrace. But when I think about those who do not have any.

Cherry-sw

HapB, I believe everybody had to have the same health insurance doesn’t matter whether you are rich or poor. Cherry

Lita19901

Medicare is also a form of socialized medicine, for which I am extremely grateful! I had no idea of the actual cost of cancer treatment to the individual when one has private or employer-based insurance. It's sickening that this is how it works.

Lita19901

Actually, you can pay for Part A if you don't have the 10 year work history. ACA also has costs to the user in most cases, although on a sliding scale.

And If Medicare had no cost to the government/ tax payers, Congress wouldn't be talking about cutting it!

Single payer is my hope and my dream!

ElaineTherese

Hmm, no, taxpayers pay for Medicare. Medicare is funded by payroll taxes (paid by workers like me), premiums and surtaxes from beneficiaries (like you, HapB), and general revenue (e.g. from income taxes).

Lita19901

Weird. My husband and I combined pay much less than $500 per month for Medicare, and we both have the top Part B and F and I have the top prescription coverage.He gets his prescriptions through the VA because he served in Vietnam and has several Agent Orange conditions.

Confusing

Lita19901

We do have F

ElaineTherese

Yes, you have to have contributed to qualify for Medicare. However, it is still a pay-as-you-go program. My payroll and income taxes help pay for your Medicare. My daughter's payroll and income taxes will (hopefully) help pay for mine.

ElaineTherese

https://www.medicare.gov/about-us/how-medicare-is-funded/medicare-funding.html

Both Medicare Trust funds rely on taxes paid by current taxpayers. HI relies on payroll taxes; SMI relies on income taxes (funds authorized by Congress).

Hospital Insurance (HI) Trust Fund

How is it funded?

Payroll taxes paid by most employees, employers, and people who are self-employed

Other sources, like income taxes paid on Social Security benefits, interest earned on the trust fund investments, and Medicare Part A premiums from people who aren't eligible for premium-free Part A.

Supplementary Medical Insurance (SMI) Trust Fund

How is it funded?

Funds authorized by Congress

Premiums from people enrolled in Medicare Part B (Medical Insurance) and Medicare prescription drug coverage (Part D)

Other sources, like interest earned on the trust fund investments

PatinMN

Elainetherese you beat me to it. I found something from the Kaiser Family Foundation: https://www.kff.org/medicare/issue-brief/the-facts-on-medicare-spending-and-financing/

If you scroll down a ways to How is Medicare Financed there are charts and graphs and explanatory text explaining basically what Elainetherese says above, but with percentages.

Lita19901

Just to set the record straight, we pay the standard amount for Part B. No subsidy, no government handouts. Ever.

According to the Part B tables, we would have to have a very large chunk of change in our portfolio to raise our yearly income to 85K, which is when any additional premium would kick in

carmstr835

Hi, I too am HR+ and Her2+. I have been reading and I can't seem to figure out what the EC abbreviation means. Can anyone help?

I am currently on Herceptin and perjeta every 3 weeks for a year to end in July. They did stop the perjeta during my radiation treatments and the plan is to stop it again in April for my reconstruction DIEP surgery, but I might decline that surgery, not sure yet.

My tag says I am Estrogen + and Progesterone - but I have bilateral cancer

left breast is E+ P+ Her2-

right breast is E+,P very weak (biopsy was 20% but surgical path was only .5%)and Her2+

Lita19901

carmstr835, I'm definitely not an expert here, but I'm awake, so I thought I'd give it a shot. There is a chemo regimen that is epirubicin and cyclophosphamide - could that be it?

Cherry-sw

carmstr835, welcome to this thread, I am sorry you had to join it but you will find a lot valuable info and support here. I know I have been mentioning EC a lot because I am on it right now, I am not in the US, I live in Europe and here they very seldon use AC but use instead EC which as Lita said epirubicin and cyclophosphamide, the grug names Ellence and Cytoxan, if I remember correctly, or they can use FEC where F stands for fluoracil.

red332

Greetings all! My first time posting, although I have been reading and following along with your journeys. Sorry to finally be wading in over the holiday, but I am facing a difficult decision at the moment, and was hoping you amazing ladies might have some HER2+ specific info that would help guide the decision.

In September I had a 1cm triple+ tumor removed (node-negative). 2 margins showed DCIS. Had a 2nd excision which still had DCIS at one margin. Surgeon recommended that I do chemo (i just finished #8 of 12 weekly taxol/herceptin), and then return for either a 2nd re-excision or a mastectomy (at my option). He does not want me to have a mastectomy (although he will do it). He is strongly recommending a re-excision.

I finish chemo next month, and need to make this decision, but I am having a very difficult time. I thought it would be an easy decision...I am an older (single) mom of a young child, so I need to live a long time! And yet I have serious concerns about potential complications and chronic pain and discomfort. And time off work (I work for myself so it will be difficult). And replacement of the implants eventually, even if all goes well. (tissue transfer surgery is not likely going to be an option, for a variety of reasons). And of course I've been quoted all the stats which say that I am not likely to live longer with a BMX than without one.

I've been quoted all the standard stats for 10 year recurrence (5% vs 2% for mastectomy) and survival (equal), but they seem so generalized. Are there Her2 specific stats? The taxol/herceptin study, while reassuring, doesn't break down lumpectomy vs. mastectomy stats. Also, does the fact that I have diffuse DCIS around the tumor site increase my risk for recurrence? These are the things literally keeping me up at night, which can't be good for me during treatment.

Thanks in advance for any BTDT advice or cold hard numbers that could be useful here.

And may 2018 be a happier and healthier one for us all!

Cherry-sw

red332, welcome to this thread, sorry you had to join us but I assure you will receive the answers to any of your questions. I have similar stats although my tumor was slightly larger, 1,5 cm surrounded by DCIS so they removed all together menar 8 cm3. My marginal were clean after the surgery, my tumor was not located in the breast but above it, apparently there is duct tissue even there. Mastectomy was not an option for me due to the tumor location, my genetic testing came back negative so lumpectomy, chemo, rads and Herceptin, later Tamoxifen is ny treatment plan. The research shows that mastectomy and lumpectomy plus rads are equal are equal in trrms of survival. I live in Europe and the latest trend here is to preserve as much breast tissue as possible, the mastectomy is performed only when the breast cannot be saved due to dispersed DCIS like it seems to be in your case, or a multifocal tumor, either way there must be very good reasons to remove even one breast and there must be bilateral bc so they will go on doing double mastectomy. One of our prominent BS even argues for no performing any profilactical mastectomy because the majority of women who test positive for bc genes still do not get any bc. I cannot tell much about the BMX surgery but those who went through it complained a lot about both the expanders and exchange but on the other hand they feel that they have done everything to prevent it from coming back which gives them peace of mind and no one can argue about it not being important. I hope you will comfortable with your decision when you are ready to make it, take your time, listen to all the ladies here. Cherry

moodyblues

Red.  Is this what you are asking for? This link might help.  http://predict.nhs.uk/predict_v1.2.html  they ask for tumor size in mm. or http://lifemath.net/cancer/          *They do ask about HER2 and following therapies etc.

Difficult decision for sure, so sorry that you are in the BC club.  Let us know if we can help any further.

Melanie

Lita19901

red332, I had margins that included DCIS that fell within the bounds of acceptable, but my radiologist is uncomfortable with any size of margins so he did 8 sessions of focused radiation to the site of the tumor itself after the whole breast radiation. He was confident that that the radiation would zap both the margins and anything else that might have taken up shop in that breast.

The decision to have a lumpectomy vs. mastectomy, with or without reconstruction, is possibly the most personal decision one has to make in this journey. I don't think there is right or wrong decision. Many of us had a lumpectomy but some opted for reconstruction with very satisfying results. For me, it was a no-brainer as I hate being laid-up for any reason. Plus the risk of loss of sensation was a downer for both of us. Finally being able to fill out a bra adequately would have been nice, but I don't have enough extra fat to make more breasts, so it would have been whatever foreign substance they use these days.

Being a single parent of a young child must make this more difficult for you. I really hate it when BC hits younger women. It just seems so damnably unfair.

coachvicky

Welcome, Red332, to the club you never wanted to join. I am sad to read your story. I know that this community of women will be loving and supportive to you.

You seem very well versed on your cancer and statistics.

Here is what I offer:

1. See if the Mammaprint and Blueprint tests are available to you. You can research these on BCO. These test (or tests like them) may be the specifics for you that you want instead of generalizations.

2. Get a big sheet of paper (really big ... like trainers' use) and tape it to a wall that you will see often. Make 2 columns. Title 1 column mastectomy and the other column re-excision.

3. Under each list every thought / concern / feeling you have about a mastectomy and re-excision. Please take you time to do this. List everything ... no filters. This may take a couple of days to complete. Take your time.

4. Once you are satisfied your lists are complete, review each entry. Use a + if the entry is a positive. Use a - if the entry is a negative.

5. This exercise can give you a rational approach to your decision.

6. Then ask yourself, a year from today which decision will give you the most peace? Mastectomy? Re-excision?

7. If you decide on a mastectomy, meet with a Plastic Surgeon. This must be great relationship. Review your decision based on what the Plastic Surgeon shares.

8. Whatever you decide, have your Surgeon and Plastic Surgeon (if involved) mark EXACTLY where your incisions will be.

9. Whatever you decide, have pretty pictures made of your breasts before any additional surgery. Put them away until the day comes when you want to see them.

I hope this will be helpful for you. It was for me. I tend to stay in my head wanting facts, figures, rational pros and cons to a decision. Emotionally, I got the the point that I hated my breasts and how "they" had changed my life, my husband's life, my work. My decision became easy at that point. My decision also became easier when a different cancer was discovered in the second breast. My Surgeon said he would do whatever I wanted. That gave me control. Your Surgeon reads open to what you want as well.

I have shared before that I am very happy with my new breasts. I am fortunate that I have feeling and sensation as well as the most perky boobs of any of my friends. If it wasn't for the cancer, this outcome was great. LOL.

I will also share that whatever you decide, you will get through it and you will be stronger on the other side. My last treatment was 14 August. I take the Prolia shot every six months and Arimidex daily for 4 years, 4 months. I would not wish a cancer journey on anyone and I would not take back my cancer journey. Today, I am in a much better place because of this journey. It took a long time and a lot of snot-sobbing to get to this peace.

Best wishes. Please let me and any one else in the community know how else we can help.

Vicky