Calling all TNs
Comments
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Lovelyface: cc4nps said "Have you been BRCA tested?". I think that is a great idea to help you decide.
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Lovelyface - First and foremost, it is truly a personal decision one that YOU will have to make and live with. I have a coworker that has had 3 recurrances in her breasts in the last 10 years and done chemo and radiation everytime. I have another coworker who hasn't had a recurrance in 20 years. It's a crap shoot..... I had a BMX and have not done recon yet and have no regrets, but I was comfortable with my decision from day one. I am a candidate for DIEP, which I hope to do in another year or so. I'm wondering, have you had a chance to talk to a Breast reconstruction doctor/PS to find out what you are a candidate for and would that be a little more helpful in making your decision?
heidi - love the history lessons.....something to work our minds a little extra
Sugar - I haven't forgotten about you - I will be mailing your stuff this weekend.
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I got some good news today after a stressful week. My insurance at work is not going to reimburse for any out-of-network care next year, due to a paperwork snafu they say is my fault. All of my care is out-of-network, and I had my prophylactic MX tentatively scheduled for late Jan. or early Feb. I went into the surgeon's office earlier this week to explain the problem and ask them if they could fit my surgery in before the end of the year when my coverage will change.
Today, they called back. "How does Dec. 14th sound?" Wonderful!!! They also sat down with me to see what else my insurance entitles me to before the end of the year, as I've already met my deductibles/out-of-pocket expenses. Two new mastectomy bras and a $325 dollar Amoena form are now mine, and the surgeon will write me a script for the 2nd breast form after my surgery, so I can get that ordered and submitted to the insurance company before the end of the year, too. Sweet!
If my insurance people hadn't been such butt-heads, I would have started paying them new deductibles and out-of-pocket expenses for next year, as well as paid $100/month more in premiums for the policy I wanted. I'll save that money to pay for my out-of-network follow-up appointments, instead!
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I met with the genetic counselor and filled out my family history, all i's were dotted, and all t's were crossed 100%. She submitted to the insurance company who denied me the blood test, because I have zero family history of cancer. I mean absolutely no one, I am the first one to have cancer. The test costs $3,000. I think being TN is 6% and they need 10% in order to approve a blood test for BRCA gene test. I am going to speak to the genetic counselor one more time to see what she can do. Unfortunately, I can't afford this test at this time out of my pocket, too expensive, among everything else going on right now.
Teka suggested I see a pathologist. I would have loved to see one who could explain my report to me, but pathologists don't see patients directly. I will be making an appointment to see a Radiologist oncologist soon. Next Tues is my first Taxol treatment and I am so scared, only because I did not heal all the way from my last AC as well as I had done with my prior 3. I have so much gastric issues.
Sorry for being such a whiner, ladies. I am trying my best to stay focused and positive.
Riley - Congrats. on getting Dec. 14th for your surgery.
Everyone else, have a great, wonderful weekend! Hope things go well for all of you!
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Lovelyface - I didn't qualify for the genetic testing either due to no family history. Had I been younger at diagnosis, I would have qualified but I think under 40 is the cutoff and I wa 45 at diagnosis.
Riley - what terrific news about your surgery being moved up.
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I didn't qualify for genetic testing being covered, either, for the same reasons of no family history and being 49 at dx. It sounds like this must be a common policy for the insurance companies, to deny testing.
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I haven't had the test done yet either...not sure if I would qualify..being 49 at diagnosis.but I did have one family member..my paternal grandmother had breast cancer. She was in her 60's at the time of her diagnosis.stupid question probably but I'm going to ask it anyway..if I'm through menopause would I still need a hysterectomy? Is ovarian cancer estrogen driven? Or..just like triple neg..no one knows for sure? I know I should probably have it done for my daughter's benefit..but then again would this only really freak her out? She is freaked out enough! (and I absolutely hate that).
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Here in Ontario (Canada), our medical costs, as well as stuff like the testing are all government paid. So I'm not sure if that's why they are more strict on who they test but it does look as though it's consistent with the insurance companies.
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I'm coming up on a year post dx. What is the regimen of tests done now. I've seen either my onc or BS every three months. Will I be getting an MRI again or just a mammogram? The mammogram showed nothing last time, so that would worry me. Can I request an US and MRI? I have an appt next week with my BS and I'd like to have an idea of what to expect before I go. Being Triple negative scares me as the recurrence rate in the first 3 years is high, and if I can't get an MRI for three years that doesn't quite make sense to me.
What have you all heard from your doctors?
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Claire..I had a mammo in May..and they recommend another one next May! I was freaking! When I expressed my concerns to the BS he said as long as I get a good breast exam..which I definetely get every 3 months plus SBE's..that should be ok.
To tell you the truth..I'm more concerned about mets than it coming back in my breasts...that is what I'm watching for.
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I had a mammo 3 mos post chemo, then saw my rad onc at 6 mos, and will have another mammo at 9 mos. My onc said that altho another primary bc is possible, he wants me to be aware of signs of mets from the TN. It's hard not to freak about a lack of testing, but being aware of our own bodies & communicating concerns to docs is important.
Riley: Glad to hear you were a squeaky wheel and got the surgery moved up.
I got a bit irked by a solicitation call tonight for funds to help cancer patients. The gal kept reading her script, while I tried to tell her "I am a cancer patient." I got her to listen, then said, "I feel I've given enough."
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Lovelyface: If it's any help, finding the right breast surgeon really helped me with my decisions. It's kind of like finding the right job or the right mate, you know when it is right ad everything just clicks. Some of us take more time then others (it took me 3 tries but I have heard of up to 9 consults!) to figure out what works for us.
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I didn't qualify for the test either plus I am the only one in my family with BC.
Cllaire: I don't get anything but a blood test and a check up by my Onc every three months. No mention of an US or MRI and mammograms are useless for me.
Carolyn: Congratulations on the new date!!!
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retrievermom, that's one of the reasons I hate telephone solicitors; they won't shut up until they've gotten their blurb said. Do they think if they keep talking, I'll buy whatever they're selling? And when you try to get a word in edgewise, they just talk right over top of you. Grr... I've started just hanging up the minute I realize it's a solicitor.
And it's nice to know you guys understand my giddiness about the new surgery date. Most people would think I was crazy getting excited about another surgery, but I knew I could come here and you'd all understand. I love this place and all of you ladies, too.
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Titan - what are SBEs?
Riley - I can't wait until my next surgery!
MBJ - I never had a blood test. I asked about this and was told it was not needed...
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Claire..SBE is self breast exams...but never do them on a Friday ha ha.
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ohhhhhhhh
i'm paranoid - i do them all the time...
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Titan - Regarding whether you should have a hysterectomy after Menopause - I am not exactly sure but I have 3 or 4 small fibroids, and recently my endometrial lining was looking a little thicker than normal on a pelvic scan so my gynocologist did an endometrial biopsy (painful). You will notice most gyne's will tell you that after menopause the fibroids and everything else will begin to dry out, since estrogen level goes down at menopause. I was thinking on the same lines, meaning if there is anything which looks even a little abnormal, due to being TN, I would have a total hysterectomy, meaning take the uterus and ovaries both out, just to be safe, although cancer can even come without one having a uterus or ovary. Sorry, this doesn't answer your question directly.
Claire - I was told by my first BS that insurance will now approve an yearly MRI for me. If one has breast cancer, an insurance company approves the $4K MRI for the woman every year. I have heard that Christina Applegate (the actress) is working with some group to bring to the attention that all women should have a right to an MRI, not just BC patients, since MRI is the ultimate test which tells all and save lives. I plan to insist on both mammo and MRI. I had a mammo in Jan. 2010, and they missed it, I was given a clean bill of breast health. My Onc. says they missed my cancer on the mammo. I don't trust a mammo at all, however, you need both a mammo and MRI as you will notice on your reports that they like to "correlate" the findings and compare between the two.
Once something comes up on your MRI or Mammo, then only will they send you for a diagnostic Ultra Sound.
I am meeting with my Oncologist on December 1st to ask him what his plans are for monitoring me for 3 years after treatment. I want him to tell me exactly, what the plan is. Every 3 months - what?, Every 6 months - what? I am terrified of mets and want to make sure I am covered.
Event though everything sounds so great, believe me, it is difficult to cover everything with your doctors. One can only accomplish so much at each doctor visit. All we can do is try and insist since it is our lives which are at stake, not theirs.
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Today at the Nature Center where I teach:
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Heidi - lovely picture! This week (actually most of the fall) has been unbelievably great weather in Toronto - I'm enjoying my walks/jogs and noticing nature sooo much more than ever before.
Titan: I had a good conversation with my BS on my check-up last week, inquiring about an ooph. My understanding is that the procedure would be considered when: 1. your cancer is estrogen-sensitive, and your ovaries are still producing a lot of estrogen (maybe despite tamoxifen) which could feed a recurrence - obviously this scenario doesn't apply to us at all; and 2. if you are BRCA +, which I realize you don't know. Even if you aren't tested, you may want to talk with a genetic counsellor if you haven't already to set your mind at ease... here in Ontario, you aren't considered even moderate risk for hereditary BC (qualify for testing) unless you have TWO 1st/2nd degree relatives on same side of family with BC less than age 70 or OC any age; OR ONE 1st/2nd degree relative with BC before menopause. After menopause, a single relative with BC is considered much more likely to be a completely random/coincidental event (as post menopausal women are at higher risk of BC anyway). (1st degree relative would be sister, mother, daughter; 2nd degree relative: aunt or grandmother)
My BS also said the linkage between BC and ovarian cancer is only because of the BRCA abnormality. I take that to mean that outside of the BRCA+ population, it doesn't really exist. As I'm BRCA- she said my odds of getting ovarian cancer are just like any other woman on the street (very low). I'm not sure if this helps you at all - just thought I'd share...
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Lovelyface:
Yes, I agree with you that you should ask your onc what his/her procedure for follow up is. The normal protocol for follow up for triple neg's in my area, and I'm sure across the board, is every three months by the onc, which should include total blood tests and any other labs they wish to have, tumor markers (if your doctor does them, and I'm glad mine does), vitamin D testing (mine does it every 6 months), mine also checks my breasts very carefully, and does a physical on me testing for node swelling or any other lumps or bumps! My onc took my first tumor marker at my first visit as a baseline and took the second one 3 months after chemo stopped. While she doesn't put total stock in them, she does watch to see if they should suddenly shoot upward from the low number they have been, then she knows it's time to test to see what's going on. My oncologist will schedule any scan if I want one, and I certainly do NOT want one, but should the need ever arise and I must have one, she will schedule it immediately. She does not believe in any scans unless there is a symptom warranting it. She also told me that this schedule will go on for 3 years, then switch to every 6 months until year 5, and then once a year, but if I wanted to keep on seeing her every 3 months after the 3 yrs., she would see me. This appears to be the "normal" schedule for the oncs in the Atlanta area that are knowledgeable about triple negative cancer and treat many patients with it.
My BS sees me every six months and they have their own Breast Center which is great because I get all my results right on the spot. I have a mammo on the bad breast every 6 months, and on both once a year, and they always do an US as part of the normal 6 month check and yearly check. If anything is suspected at all, they then schedule a breast MRI.
After my radiation was over, she saw me 6 months later and then switched me to once a year and frankly, I really don't know why I see her, but I go anyway.
I feel my doctors are very proactive and trust them all. They've gotten me this far and I pray the beast has been killed by all the miserable chemo and rads. All any of us can do is hope for the best. Hope my guidelines helped a little.
I wish you all the best,
Linda
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These recent posts have gotten me thinking again.
WRT follow-up visits: how often do you gals see your rad onc? I've seen my BS, med onc and GP on a three month basis but haven't been back to see the radiologist (she said as long as I was being regularly seen I could just "rotate" her in). I'm nine months out from rads, see my med onc Dec. 13 and was initially thinking about eliminating the rad onc.
However, it *is* another set of hands/eyes on my traitor boobs, so I was thinking to rotate her in next March, which would coincide with a six month mammo and one year rads completion.
I've had tumor markers, Cat scans and a brain MRI due to several unusual findings/events since completion of treatment and this has kept me "busy" enough without scheduling a rad onc appt. Now though, I have to make a decision and/or an appt.with her.
Don't you long for the time when we can stop visiting doctors on so frequent a basis? It's such a constant fricking reminder.
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Heidi - my radiation oncologist discharged me as a patient in August after seeing me for one follow up after radiation ended in April. He said since I was also being seen by the medical oncologist, I no longer needed to see him. Both he and the medical onc work out of the same cancer centre and he said it wasn't necessary. I see my GP and my medical oncologist each every six months. So I will be seen 3-4 times per year.
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OMG..I just wrote this book and forgot to submit..guess it wasn't important.
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I was dx at age 29 with TNBC with Mets in liver and spots on lung, 2/20 lymph nodes tested positive for cancer. I was allergic to taxol so I ended up on Abraxane 9 doses, AC I think 6 doses, Surgery Double Mastectomy, Abraxane 3 doses, infection chemo stopped had to switch to radiation and then 5 more doses of Abraxane. My scan after radaition was my first NED in August 09, but just to make sure they gave me more Chemo and in Oct 09 it was still NED. I see my ONC every 3 months and communicate via email, I see my onc surgeron every 6 months, haven't seen my radiation dr. since my last radaition treatment. I know that my GYN has been following my case via the computer since everything UNC has every done is on the computer, and my ONC sends her notes about me.
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Hydeskate...thanks for your post..so happy that you are NED!
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Hi girlfriends. I've missed you all. I'm still on my roller coaster. I went for a 2nd opinion on Friday up in Indy. Wacko wants me to start radiation this week on my lymph area. I explained I wanted chemo first to get a jump start on killing these cancer cells that may be floating inside of me after having 14 positive lymphnodes. She claimed that I have been cured temporarily and she felt that the AC and Taxol ha worked because my tumor was not "that" much bigger at surgery than it was when I was first diagnosed. I explained the amzing decrease in size of it and my lymphs after about 5 Taxol and then the sudden increase in size in just a coupld of weeks. She implied that I had maybe imagined it. My onc had not put in her notes that she couldn't even find or feel my tumor at 5 Taxol. She also told me to stop any and all supplements, herbs etc. there was no scintific evidence and she thought it could hurt my so-called treatment plan. So needless to say I am seeking a 3rd opinion at Sloan Kettering and have an appt Nov 23. My doc/friend has me scared and says I shouldn't wait for 3rd at SK because I need to start chemo this week. He has not yet found anyone to give it to me. My current so called onc has not returned my phonecalls from last week and her nurse said that onc has not had time to go over my info to determine what her plan is for me. So I am so excited to get a 3rd opinion at SK and they also have integrative docs which is really important to me. So I'd like to take a poll. What is the advise of all of my girlfriends on here which are on the same boat. Scared s***less about mets.
hydeskate- What does NED mean. I'm assuming it's "In the clear". I am so happy for you and it gives me so much hope.
Hhfheidi- Just love the doses of laughter you bring. Keep them coming girlfriend.
Titan- Everything is important. Now you have me so curious about what you wrote.
The best thing that happened to me today hasn't happened yet. I'll keep you posted. LOL
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No evidence of disease - a term we all love to hear 0
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Hydeskate - so happy you hear about NED.
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to titan, hahaha, love it, and your off chemo? been there too. k
ditto that everything is important as well.
Diagnosis: 9/25/2010, IDC, 2cm, Stage IIa, Grade 3, ER-, HER2-0
