Stage 2 Sisters Club
Comments
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SpecialK - thanks for the clarification. I always hesitate to give advice here since everyone's cancer is so different and docs can vary in their preference of tests and treatment plans. I can only offer what seems to be working for me. That's interesting about the insurance company viewpoint. I feel fortunate in that it was covered in my case and so was genetic testing. Those tests are sooo expensive and it's a sad reality that cost is a barrier. My MO prefers the Oncotype over the Mammoprint, but I can see how it would be useful for those who don't fit the guidelines. Thank goodness we have so many new options out there in fighting this! Hopefully there will be even more discoveries in molecular and genetics research in the very near future for all of us to benefit.
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bc101 - continued advances in genetic profiling for cancer does indeed portend good things for tailored treatment in the future - and also chemosensitivity testing that determines in advance which types of chemo are effective. For those of us who had adjuvant chemo we have to take it on faith that the chemo works since our tumor has already been removed. The good thing about neoadjuvent chemo is that you can actually tell that it is working, or not, and make any necessary adjustments. I too worry about new folks reading posts about specific treatment or testing and wondering why their physician does not follow those same guidelines - there is more variation than people think! I know subsequent to treatment many worry because their docs don't do tumor markers or scans and they worry about how something new will be found, while others have docs that do all kind of surveillance. Insurance companies don't like to pay for testing that they don't feel will make a difference in treatment. In a clear cut case of ER+/node neg Oncotype Dx is very beneficial, particularly if the result is a low score - not doing chemo is less expensive for the insurance company and the patient, so those testing dollars are well spent. They don't like to pay for testing for node positive because chemo is often assumed, so now insurance has paid for expensive testing AND chemo. In my case, being Her2+, Oncotype was not done because being Her2+ and node pos, chemo was a given. I did have Mammaprint because my oncological breast surgeon is in a study with them, but my insurance refused to cover it because they deemed it "experimental" even though it is FDA approved. I got that $5,000 bill but refused to pay for it because it was ordered without my knowledge and I did not sign a responsibility form. Don't know if the surgeon's office covered it, or Agendia ate the cost. I have referral insurance where everything needs advance approval - the surgeon's office did not seek that before my biopsy for that test, otherwise they would have known it was not going to be covered. I did have BRCA testing done on the day of diagnosis, and my insurance did cover it, because I am adopted and have no access to family history info. At that time a lumpectomy was planned but had I been positive a BMX would have been recommended. I self-elected the BMX, but later discovered surprise positive nodes (SNB was initially negative but later positive, subsequent ALND surgery revealed a large positive node), and ADH and ALH in the prophy breast meant it was the right choice for me. My understanding is that currently BRCA testing is no longer covered by my insurance company, so I am glad I was able to have it done. I have children and was waiting on pins and needles for the result.
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Yes, good point about how Oncotype saves money in some cases. Although with 1-3 positives nodes, some women don't get chemo or radiation depending on their score and how it's all evaluated, etc, etc. Part of the reason why I like this site is because I find it interesting how treatments vary and how our paths in this journey are all so different. My first BS didn't believe in doing pet scans or MRIs. After I switched providers, I was surprised to discover that my clinic follows the ASCO guidelines, which means they don't do any labs or scans for follow up. This is really scary to me. My insurance company would cover anything basically deemed medically necessary, yet I still can't get a scan to check things out. So basically I just have to be on alert and keep doing self exams.
Wow, looks like you've really been through the gamut with surgeries. How did you do after the ALND? Any issues with your arm or range of motion? I am struggling with that right now - have really bad pain in that shoulder that my PT says is rotator cuff something or other. I'm going to ask my MO for an ultrasound. I've decided that if they are not going to do scans, then I have to be ultra vigilant about reporting symptoms like pain.
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BC101 - I did fine immediately after the ALND, it was five weeks after my BMX. I had 20 IST in my sentinel, but I am Her2+ so my very progressive, but very wise, oncological breast surgeon and MO told me ALND was not optional. I ended up with a .5cm node further up the chain. This is somewhat unusual and never showed up on any imaging, nor was it palpable in any exam. If I had been declared node negative on the basis of my sentinel, not had the ALND, and relied on chemo to eradicate this additional unknown node I am not sure how things would have turned out. It would have been comparable to leaving a stage 1 breast lump in place and just having chemo, so I am glad I had the ALND. That being said, I did have a severe body-wide swelling event during chemo that caused axillary web syndrome, cording, and lymphedema in the ALND arm. I did see a LE certified PT and had treatment/exercise for a number of months then, and again after exchange surgery. I do have a sleeve/gauntlet for LE control, and I wear bi-lat sleeve/gauntlet for exercise and flying. I really recommend having some PT after these types of surgeries - it helped me a great deal. You may have rotator cuff issues, but frozen shoulder can mimic that pain and is pretty common following MX/BMX. I am sorry that you are frustrated on the scan/labs - that is a really common complaint, and very frustrating and anxiety producing. My MO did a pre-chemo PET scan, a post-chemo PET, and another PET at one year after treatment ended. He did quarterly CA 27/29, Vitamin D, CMP, CBC, CEA, but now does those bi-annually since I have graduated to twice yearly visits with him.
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Good morning all.
Just want to say Mary Alice and I saw Melissa Etheridge last night and she looks great and was great. She said she just passed 10 years of being cancer free for her BC diagnosis in 2004! Very uplifting.
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Just checking in. Had my mastectomy last Monday. Home and sleeping a lot. Pain under control. Lots of numbness around my underarms and inside of upper arms. Decided to hold off on recon so as to get the surgery done.
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Glad you are on this side of surgery! Hang in there.
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Hey Missing - Sounds like you did great. Any nodes removed? What happens next? I did a couple of PT sessions after my BMX where they taught me some useful exercises. I also got 4 drains -2 for one week and the other 2 remained a few more days. Drains were a pain! Wishing you the best.
Gentle hugs, Nisa
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missing - hope u start feeling better every day. It's a rough road but u have a great support system here. Wishing you good health & minimal pain
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Worth reading and discussing -and distinctly different from advice from UCLA onco who said "if wine were responsible for cancer recurrence, everyone in France would be dead."
http://www.medscape.com/viewarticle/824237?src=wnl...
Hugs, Nisa
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nisa - the link requires sign in - can you copy and paste?
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Sorry about that. Article source is: The World Cancer Report redefines responsible drinking.Medscape(R) Special Report <http://click.mail.medscape.com/?qs=be8396560a82f99eb4cd19a51521e2c5e9393c6d8e5df1664ef6c41e3d4856ecbadd4635a9d454bdResponsible Drinking? Not Very
"Responsible drinking" has become a 21st-century mantra for how most people view alcohol consumption. But when it comes to cancer, no amount of alcohol is safe.[1] That is the conclusion of the 2014 World Cancer Report (WCR), issued by the World Health Organization's International Agency for Research on Cancer (IARC).
Declared a carcinogen by the IARC in 1988,[2] alcohol is causally related to several cancers. "We have known for a long time that alcohol causes esophageal cancer, says Jürgen Rehm, PhD, WCR contributor on alcohol consumption, and Senior Scientist at the Centre for Addictions and Mental Health in Toronto, Ontario, Canada, "but the relationship with other tumors, such as breast cancer, has come to our attention only in the past 10-15 years."
The Risk Is Dose-Dependent
The more alcohol that a person drinks, the higher the risk. The alcohol/cancer link has been strengthened by the finding of a dose/response relationship between alcohol consumption and certain cancers. A causal relationship exists between alcohol consumption and cancers of the mouth, pharynx, larynx, esophagus, colon-rectum, liver, and female breast; a significant relationship also exists between alcohol consumption and pancreatic cancer.[1]
Links have also been made between alcohol consumption and leukemia; multiple myeloma; and cancers of the cervix, vulva, vagina, and skin, but fewer studies have looked at these relationships and more research is needed to establish a confirmed association.[1] For bladder, lung, and stomach cancers, the evidence for an alcohol-cancer link is conflicting.
How Solid Are These Data?
"For the cancers that have been identified as being causally linked with alcohol, we are absolutely certain that alcohol causes these cancers," says Dr. Rehm. "About a few cancers, such as pancreatic cancer, we are not yet certain," he says. "We believe that we have good evidence showing that alcohol can cause pancreatic cancer, but we would not go so far as we would for esophageal cancer or breast cancer. And for renal cancer, the IARC has said that there are indications that there may be an effect, but we don't have the same level of evidence that we have for cancers that are clearly detrimentally linked to alcohol."
But surely, light drinking doesn't cause or contribute to cancer? Apparently, it does. In a meta-analysis of 222 studies comprising 92,000 light drinkers and 60,000 nondrinkers with cancer, light drinking was associated with risk for oropharyngeal cancer, esophageal squamous cell carcinoma, and female breast cancer.[3] From this meta-analysis, it was estimated that in 2004 worldwide, 5000 deaths from oropharyngeal cancer, 24,000 from esophageal squamous cell carcinoma, and 5000 from breast cancer were attributable to light drinking. Light drinking was not associated with cancer of the colon-rectum, liver, or larynx.
However, a caveat is in order here. When alcohol use is self-reported, respondents might underestimate, or underreport, their actual alcohol intake.[4] This can result in finding associations between cancer and light to moderate drinking, when in reality, alcohol intake is much higher.
The Nuts and Bolts of Increased Risk
The biological mechanisms that mediate alcohol-related cancer are not fully understood.[1] Alcoholic beverages can contain at least 15 carcinogenic compounds, including acetaldehyde, acrylamide, aflatoxins, arsenic, benzene, cadmium, ethanol, ethyl carbamate, formaldehyde, and lead. Ethanol is the most important carcinogen in alcoholic beverages,[5] and the rate of ethanol metabolism is genetically determined.[6]
The first and most toxic product of alcohol metabolism is acetaldehyde. Ingested ethanol is oxidized by the enzymes alcohol dehydrogenase, cytochrome P4502E1, and catalase to form acetaldehyde.[5] Acetaldehyde also occurs naturally in alcoholic beverages. This metabolite is carcinogenic and genotoxic when in contact with the mucosa of the upper aerodigestive tract (pharynx, oral cavity, esophagus, larynx), where high concentrations of acetaldehyde induce mucosal hyperproliferation.[7] Even low doses of alcohol in direct contact with these areas can increase the risk for cancer.
Several different causative pathways are implicated in alcohol-related cancer.[1] For example, alcohol is a folate antagonist, and an alteration in folate metabolism and folate malabsorption are believed to interact with ethanol to impair DNA methylation.[8] In breast cancer, alcohol can increase estrogen levels and the activity of insulin-like growth factor receptors, which can stimulate mammary cell proliferation.[9] In digestive tract cancers, an individual's genotype could play a role. Other mechanisms that have been proposed include the production of reactive oxygen and nitrogen species, and a role for alcohol as a solvent of tobacco carcinogens.[1]
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nisa - thanks, very interesting article. I attended a symposium in 2011 at which one of the speakers from Moffitt Cancer Center (the only NCI center in FL) indicated when discussing alcohol and recurrence risk, that 2-5 drinks weekly increased your risk by 13%. You should have heard the gasp in the room, as the attendees were breast and ovarian cancer patients.
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Wow! That's pretty significant. I figure it's just best if I don't drink. I believe my love for wine in the years before my diagnosis really didn't help me and possibly hurt me, but who knows....
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I love red wine - that is all.
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:-)
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This is not good. I treated myself to 2 beers every weekend. Guess not.
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I quit altogether when diagnosed with TNBC...
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I have a drain on each side. They are a pain. Appt Thurs. with the surgeon. Will get a port and then when healed, chemo.0 -
I have a bottle of Dom Perignon in my wine fridge. If I'm going to quit, I'm not quitting until AFTER I drink that! I did have lunch with a cancer survivor of 7 years with ER+ and she takes tomoxiflen still just so she can continue to have a drink every now and then. My Radiologist told me they keep wanting to put us all in a box and tell us if we all do "this" "this" will happen. She said if I feel like a glass of wine at the end of a rough day, have a glass of wine!
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homemom - note in my post - averaging 2-5 drinks per week raised the recurrence percentage, if you drink less than that, or on special occasions, or every now and then, I think that is fine. It was the regular weekly ingestion of 2-5 drinks that the warning was about.
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yeeks! And I just quit my vodka only to really like sangria!
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I just quit beer only to start vodka
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sundermom..hahaha...maybe I will quit my sangria after this weekend...or cut back anyway!
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I love the humor and that it took a little wine to get sone of the quiet girls here to join in and speak up LoL
HomeMom - it would be a crime to give away the Don P!
Wishes for continued recovery for those of you undergoing chemo or surgeries.
Hugs, Nisa
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I probably average about 4 drinks a month.....but when the occasion calls for a glass of wine (or a margarita), I have one and really, really enjoy it!
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ruthbru - sounds like the perfect balance!0 -
Special, it looks like your computer is kicking you down a couple lines in the typing box too. The latest glitch?
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No idea - I am assuming this just started today. I am deleting the space when I am typing but I guess when I submit it is moving it back down. Weird!
Ooh - that one worked, lol!
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Oh research like this makes me scared to death to drink...and I absolutely love red wine!!!! Like others have said, there seems to be no clear indication as to how much or how little is worrisome; research just shows a direct correlation. Drinking on special occasions (not the norm) and limiting the number seems to be the best way to go ...other than absolute abstinence
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