TRIPLE POSITIVE GROUP
Comments
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Suburbs - sending you cyberhugs and hoping this gets resolved very soon. I admire how you are handling this.
Blownaway (and everybody) - As of March 1, I am on Medicare. My CT Scans revealed no issues with the offending ribs and pain beneath (So, yay, there), but it showed another issue which required me to see my GYN and to have an ultrasound. My own GYN was AWOL but her partner, whom works in another city, got me in right away and even had her ultrasound tech squeeze me in. The long and short of it was I needed a D & C and a biopsy. I asked if it could wait until March and she said yes. So that is what I did. (My radiologist gave me a hard time until I explained about the high deductible and going on Medicare March 1 - then he was cool with it, also.)
So right now, I am waiting for the results of the biopsy. Fingers crossed. I also having my mammogram due at the end of the month. I am trying to be calm about all of this but I have been downing 86% organic free dark chocolate like it was some kind of miracle cure.
As for Medicare plans, I went with a Supplemental as opposed to an Advantage Plan. The supplemental plans allow you to choose whichever doctors and hospitals you want, as long as they accept Medicare. I have an older friend who was healthy when she chose her high out of pocket Advantage Plan. (Not all Advantage Plans have high out of pocket, so you will need to check if you are interested in an Advantage Plan) Then she learned she had breast cancer, and now she is stuck with the plan and the doctors that are in network.
Hap is definitely right about Plan F. I actually dithered between Plan F and Plan G - Plan G has all the same coverage except there is a yearly Part B deductible ($183.00 this year). The plans were $21.00 a month different with the company I chose, so in the end, I went with Plan G. My reasoning was since they were getting rid of Plan F, I was worried that my company would not have incentive to keep the plan competitive in its pricing. On the other hand, if Medicare increases their Part B deductible I am hostage to that. So...
Cowgirl, I chose the same company as you. I had heard positive things. I guess I will see.
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My recommendation is also for a regular medicare plan rather than advantage. And a Plan F supplement (whichever company you go with). Mine is with the American Medical Association. Haven't paid a cent for my cancer treatment. I have been pleased with my AARP (United Health Care) for a drug plan. I think they also have a good supplement as does BC/BS. My friend, Anne, was diagnosed with Stage 4 after selecting an advantage plan, but was able to find help from several foundations for her co-pays which were significant.
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Hope this infection clears up very soon. Good luck, we are all thinking of you
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Just saying I HATE INSURANCE COMPANIES anymore. Lol such a pain
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Hi wise ladies
Just checking in before going to bed, reading the weekend messages. Suburbs, that infection sounds terrible. I hope you get better and start seeing a way to this getting resolved. Don't even know what to say.
The insurance problems, sorry ladies. My coverage seems great so far. Still I am drowning in all these explanations of astronomical hospital bills they send me...they cause me stress, since you sign that you are financially responsible for anything your insurance doesn't cover...this surely has to be illegal. It drives me nuts.
Kimcee sorry about your implant troubles. Vicky's comment also made me laugh. Damn. I wish we could just spare the one boob or both and still look terrific and not go through reconstruction and implants at all. I am scared sh*tless about the surgery and haven't talked to plastic surgeon yet. Since I have small boobs I sometimes fantasize about not getting reconstruction. Then I realize I will probably look too asymmetric and would end up going around with some prosthetic thing inside my bra which sounds like a constant inconvenience; better had something permanent to make up the lost volume. But then I have this nightmare of looking and seeing this awful-looking job. Gee i am soooo sad to lose my boob -or boobs since I dont know what the plan is for me.
Thank you ladies for being there. Hope everybody enjoyed their weekend.
Happy Monday to all!
LaughingGull
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hey Hapb, I’ve posted about this Dr. a couple times here. I find her to be intelligent with extensive experience. What do you think?
I’m so sorry to hear about the various struggles here. KimCee, I hope you see a difference in a few days - it’s so stressful to have something redone on your body and then wait to see final results. I’ve had cosmetic surgery, so I feel for you.
Suburbs, I cannot believe this struggle. Why will recovery take so long?? I’m sorry.
Reading all the complexity over insurance, etc, that you deal with in the US blows me away. While I know that as Americans, you will see the most advanced treatments first, I also think it’s just wrong that any person should struggle financially to receive treatment. This is my Canadianism coming in here. Our healthcare system in Ontario is in crisis, but Thank God I could access treatment without the stress of money.
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LaughingGull. I feel you. I did a unilateral after much research. At first I wanted both off, then was told a lumpectomy was possible but then after an MRI I was told there was also DCIS above the IDC and it was recommended I do a MX by my MO. Too me it was a crazy time, lots of research and so many thoughts running through my head. I wanted symmetry, I wanted my breast, I didn't want a prosthesis, I wanted so many things........ I was at a loss and walked around in a daze. Thank God for BCO, although the ladies couldn't tell me what to do they gave me things to ponder on, they offered reputable links to info, they helped me so much just by their hands on my back.
At this time I lack symmetry but it is not noticeable under clothes, I can do a breast lift if I want to on the right breast. I am waiting to do anything more until I decide whether I want to remove the other breast or not. My right breast is healthy but now my body/breast scares me sometimes. After genetic testing, I am not BRCA1 positive and that is excellent.
I did think about a BMX and a rad tattoo.
Hmmmm. My breast with the nipple as an eye.... the words 'Here's looking at you babe' Bahaha I hope that I made you smile!
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This Week:
1. Monday: Pack
2. Tuesday: Go to Nordstrom for a good support bra
3. Wednesday: Go to Finksberg, MD
4. Thursday: Get tattooed! Feel whole again.
5. Come home.
It has been a long 21 months.
Vicky
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Thank you all so much for your comments. I was in major panic mode the other day, needed to hear from my girls on here
Vicky...yay you!!! I am sure you told me, but are you getting 3D tattoos? So excited for you.
As for everyone in the same boat regarding cost and insurance.....it is so freaking sad. We should not have to go broke to get treatment. It is so sad and awful.
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All,
Yes, medical costs are awful in the US, even if you have insurance. I feel very fortunate to have the insurance I do, but I have to blow through my deductible, just like everyone else. (That happens pretty quickly, given that I get Zoladex every month.) Medicare sounds pretty good; I plan to work until I'm 65. I don't mind; I really enjoy teaching.
Time to eat my green jello. Yummy. It's my fasting day before my colonoscopy tomorrow. Wish me luck!
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hey Hapb, to your question re: Canada...it’s a bit complicated (I.e. I’m not well read in this regard lol). But in Ontario, doctors bill to OHIP, the Ontario Health Insurance Plan. So yes, paid by government on a fee for service basis.
Our hospitals are buckling under the demand and we are not well equipped to care for our aging population. In Western countries where extended families living together is not the norm, it is made worse.
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Vicky, good for you! I believe the tattoo is the final 'piece' to recon, correct? It's been a long journey so I'm sure it feels great to be at this point. I am scheduled for my tattoo in July. I can't wait to hear how your tattoo experience goes this week and how you like the results. Good luck ;-)
Elaine, good luck with your colonoscopy tomorrow!
Regarding medical bills and insurance.....it is beyond ridiculous what is charged for medical care and insurance. My insurance isn't paying for the revision surgery I had in Nov although they approved it prior. We shouldn't have to deal with this on top of everything else. I'll be paying my out of pocket expenses for years. I shouldn't complain because it could be much worse
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Dang Elaine ... on top of everything do you really have to have colonoscopy? Best wishes for an easy time.
MoodyBlues, How about a picture of that eye nipple?
Suburbs, Hope the infection is much better today. Has anyone considered you going into the hospital for an IV drip of antibiotics? If you did that and I missed it, I apologize for asking.
Laughing ... I hear you. Having the mastectomies was the best choice for me. I am happier today with my new breasts than ever in my life. That feeling did not happen overnight.
Yes to all. This is finale. I got skin nipples 19 October. My PS said I have faded as much as I will. BTW, making a skin nipple out of skin left a different looking scar but not bad. The areola tattooing will cover it.
My outcome with the 3D tattooing is to make the nipples look the same size and depth.
Richard is going to make pictures of the procedure.
I appreciate everyone's warm wishes and thoughts.
For those of you early on this 3P journey, you too will have this in your rear view mirror.
Vicky
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coach - assume you’re getting Vinnies - he is the best! Have a safe trip
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Sorry about the colonoscopy, ElaineTherese! I actually got mine the same week as my screening mammogram (annual). It went fine, and I did it with no meds at all (the hard part was finding someone who would do that). It isn't for everyone, but I really hate the nausea (and no anesthetist believes Propofol makes me queasy--but it does, even alone). Drinking the goop before was harder, imo. Hope yours all goes well!
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Hapb, thanks for the article. My MO and BS recommended maintaining a healthy weight and keeping my immune system healthy as two things I could do to avoid recurrence. No guarantee of course, but that was their response when I asked if there was anything I could do to prevent recurrence. No stress was the other recommendation.
My BMI was 28 at diagnosis and now I'm at 23. I too am committed to staying on course with my weight, exercise and eating real food....although those caramel m&m's I had last night were so good 😕0 -
Yes, Special. My appointment is with Vinnie.
Vicky
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Hi Ladies, I have not been on for a little while. Got away for a week of vacation with my family before chemo starts TOMORROW! I'm so anxious, it's just overwhelming. My oncologist called this afternoon and he has been fighting with BCBS for 2 weeks now trying to get my Perjeta approved but he was unable to. So I will just be getting Taxol and Herceptin for 12 weekly treatments. I am triple positive, node negative and my tumor was 1.3 cm. I am so disappointed about the Perjeta. The doctor said that BCBS's policy is ridiculously outdated and needs to be changed and he promised to continue to appeal to the highest levels to get the Perjeta for me. If we have to pay for it out of pocket, it will be approximately $90,000. Also, I have noticed online at different forums that some women who have nearly identical numbers with their breast cancer are getting the 18-week treatment (TCH or TCHP). This concerns me because I am only getting the 12-week route. The doctor said there are new studies that show the 12-week route is just as effective as the 18-week route and not as difficult on the body. But I just can't help but worry that I am not getting enough drugs to rid myself of cancer... I guess it is the evening before my chemo starts and maybe this "freaking out" that I'm doing right now is normal. I don't know, ladies, just feeling overwhelmed.
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tld - you actually don't meet the initial FDA criteria for Perjeta (tumor greater than 2cm, node positive, or both - neoadjuvent chemo) which I assume is why BCBS has declined coverage. Perjeta has just now been approved for adjuvant treatment, but I don't believe the staging criteria has changed to include smaller node negative tumors. Receiving Taxol and Herceptin for a stage 1 diagnosis is standard of care, try not to worry. If it makes you feel better, Perjeta has not yet been approved when I was treated, so I didn’t receive it either and I had an almost 3cm tumor and two positive nodes.I think it's totally normal to be anticipatory and nervous before chemo but I think you will find, like most of us, the actuality is not as bad as you think. Hang in there!
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Thank you, HapB and SpecialK. You both have made me feel better. I needed your words of reassurance tonight! I am grateful!
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Freaking out? Oh how I know!
One Sunday before chemo on Monday I made 8 quarts of pickles and chopped the cucumbers so hard I thought I cracked my counter tops. LOL.
You will be fine. Your Oncologist reads like he is really working for you. I think most Oncologist "over chemo" than "under chemo." Always remember your Oncologist wants you to LIVE!
Vicky
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hap - stage 1 includes tumors up to 2cm, so there were participants in the study that were staged higher, but the endorsementfor use of single agent Taxol and Herceptin is generally limited to stage I.
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hap - pain is not generally associated with breast tumors, but of course that is not absolute. If you didn’t tolerate relatively gentle chemo the first time, would you want more? Did you have bi-lateral imaging with your initial diagnosis that indicated no other suspicious areas? If you had a PET or MRI that did not show anything of concern it is unlikely that new tumors would develop quickly enough to cause discomfort. Are you taking an anti-hormonal at this point along with the Herceptin you are doing?
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Hap, the fact that you’re feeling it in both breasts simultaneously might point to a drug reaction. Sometimes drugs given for cardiovascular problems, like digoxin, can cause breast pain.
Another possibility would be a breast infection, but again, the fact that both breasts are affected would seem to make that less likely, although not impossible.
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hap - I believe that yes, a chest CT would show a breast tumor if it was large enough to be imaged. Your widespread pain may be caused by Femara, as it could be musculoskeletal. Why do you think Herceptin was causing you more issues if you are tolerating it without chemo now, when you were not when it was combined with Taxol? My concern for you with a different chemo regimen is that they are not given as single agent regimens like Taxol, you would likely have a combo of two or more chemo drugs.
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Hey ladies—just checking in. I got a good phone call from my BS yesterday. Final path report confirmed no lymph node involvement and margins look good. (And I got to take the part of the dressing off that’s been bugging me. Plus I slept without a bra last night for the first time since surgery—I am a wild woman!!) I have a post-op follow-up with my BS tomorrow and then leave to visit two of my kids in CA on Thursday and *then* I’ll finally have a sit down with an MO. Funny how differently we look at things. I’m fully expecting to have the Taxol/Herceptin followed by rads and an AI recommended but except for the rads I’m going to have to be convinced. I’m leary about all of the chemicals. They kind of scare me. And some people view the tx as killing cancer cells but in my head the cancer is already out and w’re just trying to prevent recurrence.
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Good morning ladies
Congratulations Ingerp! You must be so relieved. Excellent news!
To tld: you can do it! you can do it! It will be over before you know it. I remember well the day before the first chemo, I was sooo worried and teary, it was pure agony. I felt much better after the chemo because I was finally starting to do something to take me somewhere. And like magic the months went very fast and in two days I will have my last chemo. I found taxotere+herceptin+perjeta to be very easy to tolerate, your regime is similar but weekly taxol is a lower dose I believe. You may be surprised and find it easier than you expect. Good luck!
Congrats to coachvicky as well.
Happy Tuesday everyone
LaughingGull
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LaughingGull you are a ray of sunshine. Happy Tuesday to you too! (Although really I am over this long, gray, cold, wet late-winter-early-spring. . . At least we're only supposed to get a couple of inches where I am--sorry to all of you in the Northeast who are getting slammed AGAIN.)
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Vicky. Ahhh that tattoo would be too funny! Wishing you well as you travel and finish up what was started.
Great news Ingerp on the negative node involvement, I am very happy for you!
Hap I have been having flu like symptoms since I completed chemo. I am on the Herceptin alone now and didn't have these flu like symptoms when I was on TCH unless the chemo masked these symptoms. When I say flu like I mean in the bed, girl down. It has happened twice now and is always on the fourth day after the infusion and lasts just the one day. Weird. I know you must be concerned with your symptoms and hopefully it will be as the other ladies said...due to the meds.
I go Wednesday for the results of my scans and for another infusion of Herceptin. I went for my pap Monday and I am believing that I will have excellent results there as well. I have been so active lately and feeling so very good that I almost feel like Cancer never was. I am so grateful for the many blessings I have. Sunshine, rain, blue and pink and purple skies, laughter and hugs. Grateful for a Father in heaven who always has his eye on me. Just so darn grateful for life.
Here's to a beautiful Tuesday ladies!
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HapB take care of yourself with this storm. Our tornado warning radio kept us up until 2am this morning.
Laughing girl and Moodyblues, you inspire me to stay upbeat. I am anxious and overwhelmed by my TCH chemo treatments which begin next week
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