TRIPLE POSITIVE GROUP
Comments
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knmtwins - they will only cover parts of payments that are over $100 and will only cover the drug portion. My bill was $3000 for one treatment
$2800 of it was the drug so they covered $2700 and I am paying $300 of it. I had to make $60 copays all last year also - and you are right it does suck!
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i have the palb2 genetic mutation, anyone else have it?? also, my tumor was close to the nipple area and 2 months after the surgery my nipple is still inward... has that happened to others?? does it change?
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Yes it was in a node (palpable, apparently) and then two more in the breast. The one I found was fairly large but I don't know the exact size.
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Recently diagnosed and going to a Comprehensive Cancer Center on Friday to meet with the BS and team. I've already spoken with a local BS and PS and I am certain that I want to do a BMX. From everything I've read, I'll probably be doing rad and chemo also but I'll see what the BS thinks. My question is: Should I request port placement during the BMX? Would be rather nice to save myself from another procedure - even though it's considered minor. Any thoughts?0 -
rleepac - I would speak with an oncologist prior to making surgery plans. Because you have a 2.1 node positive Her2+ IDC dx you are eligible for neoadjuvent chemo/Herceptin with Perjeta, but it is currently only FDA approved for use prior to surgery for early stage patients - although some oncologists have gotten insurance to pay for Perjeta adjuvently also. How are you aware of your nodal status - did you have a SNB, or was this imaged?
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As Special K said, meet with the Onc before surgery. I saw the BS first and had a lumpectomy, then saw the Onc who said he would like to add Perjeta, but couldn't because I already had surgery. He was upset that the BS didn't advise me of this option.
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rleepac-I had my port placed before surgery because I had chemo with Herceptin/Perjeta-could have had mastectomy first but then I couldn't have the perjeta. The port surgery is minimal compared to the mastectomy surgery. Had the port surgery on Monday and back to work on Tuesday.0 -
Hi all,
I have been MIA since before the holidays. Back after recuping from Christmas chaos by taking a trip to Florida/
I was sitting in my all day real estate rally and realized that today is four years since my biopsy that identified my cancer, but also removed the tumor with clear, but close margins. I count that as my date of cancer free. Woo hoo!
I skipped about 20 pages so I hope everyone is doing well with no surprises! I'll be back on more often
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rleepac I had surgery first and asked about having a port put at my bilateral mastectomy with SNB on right and level I nodes on the left then tissue expanders. Total about 7-8 hour surgery. I was told that it was too much surgery to have at once and it was up to my oncologist if I needed a port. I hadn't met with my ONC till 2 weeks post surgery. Note that Perjeta was not approved when I was diagnosed.
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@rleepac, i would highly recommend doing chemotherapy prior to surgery.. also, as i had never had a surgery before, my port placement was not fun - i suggest being put to sleep for the procedure, i just received local anesthesia for mine ... my veins were also very hard to find from what the doctor mentioned and that may have added to my discomfort.
the TCH cocktail does wonders, that's why i suggest doing chemo first... many people seem to get clear margins with this aggressive cocktail, i am also one of those people. you may also get clear margins in your lymph nodes from the chemo prior to surgery which won't require you to remove all of them .. in case you fear lymphedema.
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How long does it take to get biopsy results back if it is a recurrence to the same breast? My Mom had her biopsy last Thursday 1/22 and we still don't know as of today 1/29. I have called the Breast Center and Pathology on Monday and yesterday (Tues) they were closed due to the weather. They still do not have any answers. My Mom is scheduled to see the Radiologist this afternoon. When she was diagnosed back in 2012 they had a final diagnosis the next day after her biopsy was done. Does it take longer to test what is believed to be scar tissue? The girl at the front desk at Pathology said they were doing additional staining, which is very routine, but there was no diagnosis in the system as of yet. I also spoke with one of my best friend's husband who is a Urologist and he said the longer pathology takes the less likely it is cancerous. I am beyond going crazy waiting for answers!! Has anyone else had this type of experience?
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rleepac, if you are going to do chemo before surgery, you might want to see if Interventional Radiology can put it in. At some hospitals that is standard, at others they just have a surgeon do it. I learned the hard way that I should have used IR, as my surgeon punctured my lung during port placement. IR uses special monitoring equipment so they can "see" where they are putting the tubing. Regular surgeons just go by "feel" as they fish the tubing from the port up to the vein in your neck.
laolson, I am so sorry you mom is facing a potential recurrence. Hopefully the radiologist will have the results by the time you get to the appt this afternoon.
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laolson18 It can take up to 2 weeks. HER2 testing is sent out but don't be afraid to call and keep calling. You have to be your own (mohter's) advocate. Medical are so overworked and understaffed things can get overlooked.
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Thanks Lago! I actually just received the call from the Radiologist and all is clear!!! No Cancer!!! It is what they expected, scar tissue from where she had her lumpectomy and radiation. She had another biopsy on the left breast which is completely benign. They will continue to monitor every 6 months on right breast, but will also use ultrasound, since that is how they discovered the scar tissue. I have no idea why it took so long to get the results. Maybe she wasn't considered a high priority or due to the snowstorm earlier this week. I am just glad the results are good!!! She also saw her oncologist this week before getting the results and he now said she can be seen every 6 months, as long as everything is negative with the biopsies. Life is good!! Thank you for being supportive!
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laolson, I was posting while you were - good news about your mom! Glad to hear it.
Re: chemo before surgery. I was one who had TCH + perjeta before surgery and had a complete pathological response to the chemo. It really worked well for me.
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I'm one that had Perjeta after surgery. My insurance company never questioned it. Now they didn't initially pay for my Herceptin, but that's another story! Not all insurance companies will pay for Perjeta after surgery so you would have to keep that in mind. If I could go back and start over, which I'm not sure sounds good after 5 months of chemo, I would have done my best to have chemo first. My circumstances were a little difficult so we decided that surgery first would be best. Getting chemo prior to surgery allows you to see how your tumor responded. There are a lot of women who have had TCHP or ACTHP that have had complete responses. I will never know how my tumor may have responded. I feel a little nervous at times not knowing but seeing everyone that has done so well with Perjeta makes me feel good about my prognosis.
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laolson18 Thanks for sharing the good news. Happy Dance for your mom.
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Thanks for all the input. I'll definitely look into neoadjuvant therapy. The micromet in the one node was found during the lumpectomy. They actually thought they were going in for an excisional biopsy of an abnormal node and it turned out to be a 2.1cm mass with an adjacent involved node. I'm certain they didn't run the dye for SNB and I know from the path report that they didn't get clean margins. Additionally, there is another small mass that is read as highly suspicious on MRI (due to rapid uptake and washout kinetics) in a different quadrant of the same breast. I don't know how those things change the picture.0 -
Rleepac, you already had the tumor removed? If so, then it's no longer neo adjuvant treatment. It will be adjuvant treatment. I assumed since you said you were thinking of getting a BMX that you hadn't had surgery. You can still talk to your MO about possibly getting Perjeta.
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Little known point, that I heard on one of the videos with Edith Perez, a researcher from Mayo Clinic, is that you can do adjuvant with Perjetta (pertuzumab), and here it is from the NCCN Breast Cancer 3.2014 Guidelines; it is a footnote, so many MOs have been missing this, I know I was told I had to do it neoadjuvant, but that isn't correct. Here is the footnote
"A pertuzumab-containing regimen can be administered to patients with T2 or N1, HER2-positive, early-stage breast cancer. Patients who have not received a neoadjuvant pertuzumab-containing regimen can receive adjuvant pertuzumab."
It is footnote 8 on page 555; NEOADJUVANT/ ADJUVANT CHEMOTHERAPY BINV-K
So rleepac, even if you have had a lumpectomy, this option is still open to you, and if your MO doesn't offer it, ask them to look it up. Also, make sure they send Herceptin, Perjetta and if they are doing Neulasta, Neulasta, in for pre-authorization. They are VERY expensive, (close to $50,000 'full price', not insurance negotiated price) each time you get them, so some will balk, and then the MO has to do a peer to peer review with a doctor from the insurance company, citing things like this, and it gets approved. This whole cancer thing is a glorious little dance...
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There are a lot of women that get Perjeta adjuvantly but because it isn't FDA approved, insurance doesn't have to pay for it. I agree that you should get preauthorization because the price the hospital charges insurance companies is ridiculous. Mine "only" charged $25k for Herceptin and Perjeta and received $9,500 from the insurance company.
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Mommato, I completely agree. my medical center didn't even give me the option of neoadjuvant treatment. Their path had me go from diagnosis to the surgeon, and not meet the MO until after surgery. My insurance paid for perjeta after surgery - no questions asked. I'm not sure if I'd have done it differently, knowing how much trouble I had with chemo (but surgery was normal). But I do wonder about the tumor's response to chemo,
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I am wondering if insurance can view rleepac's surgery as an excisional biopsy instead of a lumpectomy due to the lack of SNB, multi-focal issues, and dirty margins. That may still classify Perjeta as neoadjuvent, so that could be beneficial for approval of payment for targeted therapy.
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My Herceptin was $13,000 to $15,000 every time through my insurance. My Neulasta $5,000 each time. Treatment is VERY exspensive .0 -
Maybe they could classify it as medically necessary due to all the reasons Specialk listed. That is if they don't consider it neoadjuvant. The peer to peer review would be beneficial in that case.
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Rleepac - I hope we aren't scaring you with all these prices for drugs. I chose the chemo center in town that was NOT associated with the hospital. By doing that, I paid a $60 co-pay every time I went, which was once a week for bloodwork, and on chemo week twice, once for bloodwork and chemo then back the next day for a Neulasta shot. If I had done the one the hospital had, I would have paid the co-pay and a hospital 'room' charge every time, even though it was an outpatient facility not on the hospital's main campus. I was not aware of this, until months later when the bills started coming in from the hospital for visits I had had with one of their MOs, I didn't like him, so I changed, and it saved me money, so I thought I'd pass the info along to you. Mind you, my only surgery before was to put in my port, so I didn't meet my out of pocket max, until my BMx in December. Many others meet that early on, with their surgery.
I agree with SpecialK, since they didn't get clear margins... could chemo now be considered 'neo-adjuvant'? Who knew not getting clear margins might be a good thing :-) See my craziness, that is how I have dealt with cancer, just always try to find the 'happy' point. For example, I lost my hair with chemo, now it is so much quicker to get ready, no more drying of hair, and I'm not normally the type who tries to look for the bright side all the time, but during this journey, it has helped and so has this saying, which someone posted on BCO.org and I have kept with me, it isn't a sprint, it is a marathon! That saying has allowed me to slow down during the journey and not be so impatient, again, not necessarily part of my normal character.
BTW - Here is the link to the FDA approval, I had forgotten that, was the potential issue... http://www.fda.gov/Drugs/InformationOnDrugs/Approv...
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I work for the company that makes Perjeta. What happens is that FDA wants complete assurance that a cancer drug works well, so drug companies initially have to study it in neoadjuvent situations to see a pathological response. Once it is cleared for that, the companies can go forward and expand the intended use population by doing trials in people adjuvently. However, when a drug is only cleared for pre-surgical patients, then the payers get all up in arms and refuse to reimburse for those who are not the intended use population.
I do think if it works neoadjuvently it will work after surgery, but FDA, insurance companies, oncologists and CMS need evidence of that. Medicine is business.
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Anyone who didn't get a complete pathological response participating in the KATHERINE trial that could answer questions regarding this trial?0 -
No, no...not scaring me at all! I went to a University Comprehensive Cancer Cener (CCC) today for my first visit. It was an excisional biopsy and not a lumpectomy that was done the first time. Unfortunately, the local doc kinda messed up. He didn't check for a sentinel node BEFORE he cut. He removed the 'abnormal palpable node' and the mass that was right next to it (which he didn't know about until he got in there) and it happened to be breast cancer. Honestly, I think he was certain it was lymphoma but that's not really an excuse to not do a SNB.
The CCC BS was quite disturbed by the fact that the first surgeon most likely severed the lymph channels and she doesn't think she will be able to do a SNB. She is going to try, but is not optimistic. So, the 2 options are AND or rad. She doesn't want to take any unnecessary nodes if possible to reduce risk of LE so she's leaning toward radiation. However, given all that...she is going to present my case to the multidisciplinary tumor board on Monday 2/9 to see what the consensus is. She also mentioned that they might want to do chemo first. She said chemo is a for sure thing but she isn't sure if it will be before or after surgery. I'm pretty disappointed in the fact the the original surgeon kinda messed things up and put another obstacle in my treatment but I can't do anything about it now. I'm just going to roll with it!
I feel way more comfortable with the CCC. They know their stuff. I met with a genetic counselor because I have 75% Jewish ancestry and a family history of prostate and breast/ovarian cancers. They are testing me for BRCA1 and BRCA2.
I did opt for a BMX with reconstruction. Even though the outcomes are supposedly the same, I need the BMX for psychological reasons. Plus, this CCC has done extensive work on skin sparing/nipple sparing MX and that is the plan. They actually 'core out' the nipple - cool huh?!? I'll lose sensation in the nipple but I'm not concerned about that since I don't seem to have much sensitivity there anyway.
Additionally, the BS and the genetic counselor said it might be best to have my ovaries removed but they are also going to run that by the tumor board and the Onc GYN once my genetic testing comes back.
Whew...it's been a long day! But, I really do feel good about the CCC and I know that I'm in excellent hands. Surgery is planned in 4 weeks unless the tumor board says chemo should come first.
I'm handling this one day at a time...
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rleepac Just an FYI. Ashkenazi Jews have a slightly higher risk of having the BRCA gene but given your history you are even higher risk for the gene.You may test negative but there still might be some other gene that they haven't discovered yet that puts you at higher risk. So glad you have a good team now.
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