Why Im Not Doing Chemo
Comments
-
Thats really funny ive never seen it before. Thanks x
0 -
I looked at the link that Apple posted regarding funding of research by Komen. Millions have been given to funding research, yet it is only a tiny drop in the bucket compared to the billions that they rake in. I noticed that the amount in percentage of the pie for research has been removed from the website that was so visible when I last looked. When I last saw the website, the percentage set aside for research was only 23%.
You may be interested in a documentary film to be released February 3rd in Toronto entilted "Movie slams pink-washing in breast cancer campaigns." It raises the question of where the money is going. I look forward to seeing the film. I posted it as a topic as I thought it would be of interest to everyone.
http://community.breastcancer.org/forum/73/topic/781178?page=1#idx_1
0 -
PlantLover: I think we will have to agree to disagree with regard to the antioxidants, but I think I've found a rads therapy that is only five days 2x a day and it's done. It targets only the tumor site and is external beam. There is less radiation and it doesn't effect the heart, lungs, or rib cage as much. A week or two off antioxidants won't matter much but six weeks is too much and would set me back with all the progress I've made.
0 -
Kaara - How cool! You found something that works for you and that's worth a lot, if you ask me. I don't do the research most of these folks do so disagreeing with me doesn't mean much, lol, if you know what I mean. Just seems that's what I had been told.
Any ole' way ... good luck to ya!
0 -
Just to let you dear ladies know that today I got out the drain thing
I also saw my PT, who said that the frozen shoulder scaring, bc scars, snb scars are all pulling against each other making my pec muscles tighter than usual. It is probably whats made it more of a painful recovery. She said, my situation was complex, and would need more therapy than most for mx. I was glad she understood the RSD pain thing, and saw the potential even with what is going on with the scarring. Now I can see even with the botox why I was having so much muscle spasms under the arm and under my shoulder blade area. She said not to take muscle relaxant meds....need to stretch out all the shorten muscles...and I am thin which makes it a little harder.It is beautiful when you find a doctor or pt who sees how your past problems effect treatment plan even for physical therapy. My last pt was good, but didn't consider the past frozen shoulder as part of the treatment plan. The one I have now said, we have to address them all to get the muscles working properly.
0 -
eve: Good for you....glad things are working to your advantage and you have someone you can rely on.
0 -
Eve - did you really research botox and what it is. I'm quite amazed you would agree to having it injected into your body.
0 -
Eve...I respect your decision to do monotherapy. However, for anyone who comes to this site and reads this thread...this is the latest study regarding combined therapy:
Preoperative Breast Cancer Treatment May Be Improved By Combining 2
17 Jan 2012
Anti-HER2 Drugs
Using
two drugs that inhibit the growth factor HER2 for preoperative treatment of
early-stage HER2-positive breast cancer appears to have better results than
treatment with a single agent. In a report in the January 17 issue of The
Lancet, an international research team reports that a protocol adding
lapatinib (Tykerb) to trastuzumab (Herceptin) was more effective than
single-drug treatment with either drug in eliminating microscopic signs of
cancer at the time the tumors were surgically removed.
"This is the
first demonstration that adding a second anti-HER2 therapy, lapatinib, to
trastuzumab is superior to trastuzumab alone in patients with early breast
cancer," says José Baselga, MD, PhD, chief of Oncology at Massachusetts General
Hospital (MGH) Cancer Center, who led the study. "It opens up the concept of
dual HER2 blockade as a better approach for patients with early, non-metastatic,
HER2 breast cancer."
Approximately 20 to 30 percent of breast cancers
are driven by overexpression of HER2, and such tumors are particularly
aggressive. Both trastuzumab and lapatinib are agents that target HER2 and have
been shown to improve the outcome of patients with HER2-positive breast cancer.
Trastuzumab is currently approved in the U.S. for postoperative treatment and in
Europe for both pre- and postoperative therapy; lapatinib is used in combination
with chemotherapy for patients whose tumors have stopped responding to
trastuzumab. Since the two drugs have different mechanisms of action,
combination therapy is being investigated to reduce the development of
treatment-resistant disease.
The current investigation - the NeoAdjuvant
Lapatinib and/or Trastuzumab Treatment Optimization (NeoALTTO) study - enrolled
455 patients in 23 countries. Participants had early-stage, nonmetastatic
HER2-positive breast tumors that had not yet been treated and were randomized to
one of three treatment arms: anti-HER2 treatment with either intravenous
trastuzumab, oral lapatinib or both for 6 weeks. For all participants the same
anti-HER2 therapy was continued for another 12 weeks, with the addition of a
weekly dose of paclitaxel (Taxol). Tumors were removed surgically within 4 weeks
of the last paclitaxel dose. At the completion of surgery, patients received
additional chemotherapy and then continued to receive the same anti-HER2
therapy, for a total of one year of anti-HER2 treatment.
More than half
the participants receiving combined anti-HER2 therapy achieved a pathological
complete response, which means is they had no visible cancer cells in pathologic
samples of the removed tissue, a standard measure of the success of preoperative
- also called neoadjuvant - therapy. Similar results were seen in less than a
third of those receiving a single anti-HER2 agent. The impact of these protocols
on patients' postsurgical survival will be reported in a future study. The
authors conclude that, compared to the standard trastuzumab treatment, the
combined approach statistically improved the rate of complete remissions.
"We are also conducting a companion study, comparing dual HER2 blockade
to single-drug therapy in adjuvant [postoperative] treatment of 8,000 patients,"
Baselga says. "If that study's results confirm our current findings, the
implications could be profound for the way we design clinical trials, suggesting
that we could answer important questions with much smaller trials." Baselga is a
professor of Medicine at Harvard Medical School.Article URL: http://www.medicalnewstoday.com/releases/240376.php
Any medical information published on this website is not intended as a
substitute for informed medical advice and you should not take any action before
consulting with a health care professional. For more information, please read
our terms and conditions.
Find us on
Facebook: www.facebook.com/mntodayWeekly newsletter e-mails
available at: http://www.medicalnewstoday.com/newsletters.phpSend your press releases to
pressrelease@medicalnewstoday.com0 -
Voraciousreader, so these people got Herceptin, Tykerb, and Taxol? Did they also get AC in the beginning? This is interesting. My onc didn't run the FISH test until after surgery - I had some residual tumor that came back HER+. (They should have run it at diagnosis.) Anyway, I didn't start Herceptin until 2 months after completing ACT. So I am somewhere in the middle of this debate - can't call myself monotherapy, because I had chemo, but I didn't do the standard protocol, either. My BS thinks that I would have come much closer to, or perhaps had, a CPR if I had the Herceptin, because my response to chemo was fantastic. 5cm tumor shrank to 1.2cm and it shrank the entire time, even during the three weeks after chemo. So adding Herceptin would have probably really kicked its ass. Can't worry about that now, though - definitely glad to be getting the Herceptin and definitely going to do some sort of clinical trial when I finish in May.
0 -
Hi evebarry,
How are you feeling?
I too developed problems that were turning into frozen shoulder, and was helped by PT. I still have problems with that shoulder but the shoulder is loose enough that it isn't frozen. However, I will be seeing my breast surgeon about it because the radiation I received for the breast is gradually tightening up over time due to the radiation necrosis damage, due to an incorrect dosage/time of exposure prescribed by the chief of the new radiation center where I was treated. That side is just weaker all around, possibly in part because of the sentinel node biopsy plus the rads necrosis plus the lumpectomy, so the neck and shoulder muscles have tried to compensate. In my case, some of the neck PT was actually more helpful than the shoulder and arm PT. Frozen shoulder is really painful, and I can see why you have had that problem to deal with on top of all else.
AlaskaAngel
0 -
The moderators just posted a link to the Lancet studies and BCO.org's commentary. Here is the commentary of the studies:
Dual HER2 Blockade Better than One as Neoadjuvant Treatment
Treatment given to weaken and destroy breast cancer BEFORE surgery is called neoadjuvant treatment. Treatment before surgery isn't routinely used to treat early-stage breast cancer, but may be used if the cancer is large or aggressive. Treatment before surgery is more commonly used for breast cancer that has spread outside the breast to other tissue in the breast area (locally advanced breast cancer). One or more chemotherapy medicines are usually the neoadjuvant treatments used.
Two studies looked at neoadjuvant treatment for HER2-positive breast cancer.
One study, called NeoALTTO, found that giving both Herceptin (chemical name: trastuzumab) and Tykerb (chemical name: lapatinib) with the chemotherapy medicine Taxol (chemical name: paclitaxel) before surgery to treat early-stage or locally advanced HER2-positive breast cancer offered more benefits than giving only Herceptin and Taxol or only Tykerb and Taxol.
The other study, called GeparQuinto, found that Herceptin given with chemotherapy is more effective than Tykerb given with chemotherapy before surgery to treat early-stage or locally advanced HER2-positive breast cancer.
Results from the two studies were published online in The Lancet on Jan. 17, 2012.
HER2-positive breast cancers have too many copies of the HER2/neu gene, which make too much of the HER2 protein. HER2-positive breast cancers tend to be aggressive, so treatment before surgery may be recommended. Herceptin and Tykerb are targeted therapies that fight against HER2-positive breast cancers by blocking the cancer cells' ability to receive growth signals.
Herceptin is given intravenously. Tykerb is a pill taken by mouth.
Herceptin and Tykerb aren't approved by the U.S. Food and Drug Administration to be used before surgery to treat early-stage breast cancer, but doctors sometimes use Herceptin that way.
In the NeoALTTO study, 455 women diagnosed with early-stage or locally advanced HER2-positive breast cancer got one of three treatment regimens before surgery:
- Taxol and Herceptin
- Taxol and Tykerb
- Taxol, Herceptin, and Tykerb
After the treatment regimen was done, the women had surgery to remove the cancer. The researchers recorded how many women had no active cancer cells in the tissue removed. When no cancer cells are in the removed tissue, doctors call it a "pathologic complete response." Some doctors believe a pathologic complete response to treatment before surgery means the cancer is less likely to come back (recurrence).
A pathologic complete response was much more likely in women who got the regimen that included both Herceptin and Tykerb.
Pathologic complete response rates were:
- 29.5% in women who got Taxol and Herceptin
- 24.7% in women who got Taxol and Tykerb
- 51.3% in women who got Taxol, Herceptin, and Tykerb
The combination of Taxol, Herceptin, and Tykerb seemed most beneficial for women diagnosed with hormone-receptor-negative cancers.
Herceptin and Tykerb fight against HER2-positive breast cancers in different ways. This might explain why combining the two offered more treatment benefit than either one alone.
In the GeparQuinto study, 620 women diagnosed with early-stage or locally advanced HER2-positive breast cancer got a regimen of Cytoxan (chemical name: cyclophosphamide) and Ellence (chemical name: epirubicin) followed by Taxotere (chemical name: docetaxel) before surgery.
Half the women also got Herceptin as part of the treatment regimen before surgery; the other half got Tykerb.
After the treatment regimen was done, the women had surgery to remove the cancer. The researchers found that a pathologic complete response was more likely in women who got the regimen that included Herceptin (30.3%) before surgery compared to women who got Tykerb (22.7%).
Diarrhea, sometimes severe, can be a side effect of both Herceptin and Tykerb. Diarrhea also can be a side effect of chemotherapy. In the GeparQuinto study, severe diarrhea was more common in women who got Tykerb compared to women who got Herceptin.
A number of women in the GeparQuinto study stopped taking Herceptin or Tykerb or stopped the entire neoadjuvant regimen because of serious side effects, including severe diarrhea. Stopping treatment also was more common in women who got Tykerb. Although heart problems can be a side effect of either Herceptin or Tykerb, heart problems weren't a major side effect in these two studies.
If you've recently been diagnosed with HER2-positive breast cancer and haven't had surgery yet, you might want to talk to your doctor about whether treatment before surgery makes sense for you and ask about these two studies.
If your doctor does recommend treatment before surgery that includes a targeted therapy, results from the GeparQuinto study suggest that Herceptin would be the better choice. The NeoALTTO study results suggest that using BOTH Herceptin and Tykerb before surgery to treat early-stage or locally advanced HER2-positive breast cancer might make sense.
More research is being done that will help doctors understand how best to use these targeted therapies in combination before and after surgery. The ALTTO study, which is related to the NeoALTTO study, is looking at the best way to use Herceptin and Tykerb AFTER surgery to treat HER2-positive breast cancer.
Stay tuned to Breastcancer.org for updates on research aimed at finding better ways to treat both early-stage and advanced-stage breast cancer.
0 -
I saw my oncologist today. I was a little disappointed in that our last discussions she seemed ok with my choices. In one breath she says good news, you are cancer free. Your scans, and the recent brain scans looks great...no cancer. Your nodes are clear, and with the mx you are Cancer Free! On the other hand she says, but your cancer was grade 3, still her2+++, with high proferation rate and no vasular findings. Yea! I'm cancer free, but then she began again after knowing why I'm not choosing "standard" treatment began pushing it. She begins insisting I need chemo, and etc. If she wasn't so sweet, I would had walked out. She said I don't want to find you have a recurrence in 3 to 4 years, mets. I said, how can it spread when the whole breast was removed. She followed, well, it can happen in the other breast or some place else. It's all prevention. I said, that's pretty heavy guns for prevention with possibly horrible side effects. And at my age, I don't do sick or being dependent well. Do to the Al, she recommended, I don't want a broken hip and having my children to take care of me. They are young and I don't want anyone feeling guilty for me being down and out. I said if I was 40 and maybe 50, you might get me to change my mind...maybe not? Plus, I have read too many testimonies of women on anti hormone treatments who feel old way before their time. Like I've said, I'm getting older without the help of ridding me of all my estrogen...so she again said try tamoxifen for a month.
She then said, well, I do have one patient who is much older than you who has done the whole "standard" treatment and is doing well. One patient? Hmm...one in how many? How many aren't doing well?
She wants me to start the herceptin early Feb. I'm not even through with reconstruction. And she wants me to have a port put in for the herceptin, and all the blood work they will be doing throughout the year. I' said, I would research it before I decided. I learned today a port is another surgery...it is still a surgery that requires another co-pay.
I guess, today, I'm not a happy camper. On one hand, I'm so happy I am just stage 1a. It is right above stage 0. On the other hand, I lost a breast for it and I am told i have a year long cancer treatment. Does not compute. Oh, 5 yrs if you do the drugs
... and I've also read too many stories here of women with those drugs who have recurrences. My head is swimming after talking to her. I'm going to contact the alternative oncologist and get his recommendation before preceding any further.
0 -
Eve... I hope you understand that there is a huge difference between Stage 0 and Stage 1A. Stage 0 is non-invasive. Whether you are Stage 1A or 1B or Stage 2 or 3 your breast cancer has left the ducts and has the capacity to metastasize. Once you have an invasive breast cancer, whether you do a lumpectomy or mastectomy, choose to do or not do radiation or choose or not choose chemo, you will never know whether or not you are cancer free once you have invasive breast cancer.If you ultimately die from something other than metastatic breast cancer, then you will have died, cancer free. I never quite understand why some doctors exclaim you are cancer free. Mine never said that. Nor would he. He did say to me when I asked if I would do well, he replied, "I certainly hope you will do well because you have excellent prognostics. But with breast cancer, you never know.".
Do you understand that no scans will find microscopic rogue cancer cells? That is why your doctor is recommending further treatment...to soak up and destroy whatever cancer cells might be lurking in your body. What she is also telling you, since you have gone over your medical history, is, she thinks you are a good candidate for more aggressive treatment.
Without a doubt it is a good idea to get several opinions. I would love to hear what the alternative oncologist thinks you should do. But make no mistake. There is no such thing as "just a stage1A" cancer. You have an aggressive INVASIVE breast cancer. If you have read the studies I posted today,notice that HER2 positive breast cancers can be very successfully treated. Today's published study should give many HER2positive sisters lots of hope.
You might not be a happy camper today, but your doctor gave you important information that you need to wisely consider.0 -
Beesie, I did ask the oncologist the question about the biospy report compared to the surgical report. She said after she got the surgical path she doesn't give much value to the biopsy report. That made me wonder a little because some bc women worse part of their cancer are found in the biopsy report. My biopsy was slightly larger than the surgical ... which is slightly under 2 C 1.8 C, where the biopsy was 2 C. I was told that they left about 5 mm in the breast after the biopsy. You would think they would put it together as it was all part of the same tumor. Apparently most don't? I got to look back at that last report you posted and I will give it to her. It just makes more sense to me. I am also going to get a second opinion in regard to the surgical path report. From what I understood the other parts of the breast weren't throughly examined. I wouldn't be surprised if it was properly examined like before they would had found more dcis, which would have given me a better feeling about removing my breast.
0 -
Hi evebarry,
I am sorry today was so disappointing. I remember the "good news!", "bad news", "good news", bad news" ups and downs and how jerked around I felt. Why would any doctor with experience who is genuinely conscientious not understand that? Would they want to have that kind of doctor? Or has it become somewhat of a standard practice to let a patient "feel good" initially and then change the tune once a patient is "on the hook"?
It is very conflicting to know that "the vast majority of stage 1's don't need anything but surgery to avoid recurrence" but "of course you might be one of the tiny group that recurs". Every one of us wants more certainty that it "won't be me", but no one can ever be certain, even right after completing whatever treatment one decides to do.
Part of the confusion comes from anyone reassuring you that it is possible to be "cancer-free". IMHO, when medical providers use that terminology they have deliberately started down the road of being manipulative and dishonest. There is no way to know at this point in time whether I am cancer-free, or you, because there is no sure test for that yet. At present there is no treatment that garantees that you will not recur, whether you choose standard treatment or alternative treatment or some combination.
I remember when I asked my onc what studies had been done to know how the brain might be affected by the standard chemotherapy he recommended, and he responded like your onc, "Well, in 30 years I've only had about 5 who were totally disabled by it." How reassuring! I was supposed to trust that he had done his homework about treatment, even though he had never done the homework about how it can affect the brain????
I had to get used to the basic awareness that what they don't want to know, won't often be researched, but what they are interested in, usually is.
Standard treatment is no fun, but (aside from possible concurrent personal health issues like yours) that wouldn't stop me from doing it again. What stops me is the failure to include common sense factors as part of the risk evaluation. IS a patient who is obese likely to recur? Am I obese? Is a patient with a smoking history likely to recur? Am I a patient with a smoking history? Is a patient who drinks a lot likely to recur? Am I a patient who drinks a lot? Is a patient who is less healthy than I am more likely to recur? Am I a patient who doesn't exercise consistently? Is a patient who exercises consistently less likely to recur?
Are those risk factors considered in writing as part of your risk analysis by your doctor? Or are those considered so indefinite or insigificant in counting what matters that their advice fails to be that honest about it?
If you don't really fit those pictures, even though there is NO garantee you won't recur, you are still less likely to recur among that tiny group of those who do. But there are no garantees, either way.
AlaskaAngel
0 -
eve - did you have an excisional biopsy? I am wondering how you had 2 cm of tumor removed. If they say they left 5mm in the breast after biopsy, how did you end up with a 1.8 cm mass removed during MX? Was the whole 1.8 cm tumor material? Most don't combine the numbers from biopsy and surgery because the biopsy sample is usually very tiny, and thus inconsequential to the total size of the cancer. Also, I think your MO is encouraging you to do chemo out of concern for your future - I am not trying to convince you - I know you don't want it. I have to say that I am one of the youngest patients at my center - I am 55, I have sat next to a number of ladies over 70 who have done beautifully on chemo. Aggressive Her2+++ cancer can spread beyong the breast without LVI or positive nodes. There is not a clear understanding of how this happens, that is why chemo functions as an insurance policy of sorts - not a guarantee though. I am not through with reconstruction either, I have been receiving Herceptin since last February, that is pretty usual. Did nobody involved with your treatment suggest that you have a port put in during your MX? That is when mine was done. I have been on Femara for about 6 months, only have some mild joint aching, but some of that may also be from Herceptin. My last one is tomorrow, so I should know in the not too distant future.
0 -
AlaskaAngel... Where do you get your information from that only a tiny number of Stage 1 patients recur? I am Stage 1 and according to my Oncotype score of 15, with Tamoxifen, my risk of distant recurrence, mets, is 10% and THAT score is considered "low risk" of recurrence. Keep in mind that people like me who fall into low risk DO NOT have HER2 positive tumors, which would make our risk of recurrence even higher. Women with Stage 1 and 2 ER + tumors who are fortunate to have low Oncotype DX scores DO NOT have a TINY chance of recurrence.
Please back up your information.0 -
I think that perhaps one hears what one wants to hear. If one wants to hear "cancer-free," that's what one hears.
My other thought is that a lot of this discussion on this thread has been on what we wish we knew, what facts we wish we had, what data and research we wish were done or not done. But unfortunately, cancer being as complicated and complex as it is, oftentimes we can't have every answer, at least not right now. Maybe in the future, but somestimes, you just have to fall back on "it is what it is."
Eve, I think your oncologist was calling your kind of cancer, Her+, exactly what it is, and honestly, she likely said the same in earlier encounters with you, but again, one hears what one wants to hear.
Finally, sure, there are stories on BCO of women who went through medical treatment and still had recurrences. You could focus solely on those, or you could think of the thousands and thousands of women who have left BCO, or perhaps never even needed it, and are out living their lives fully and completely after medical treatment. Those stories are unheard here on BCO, but they're there, even if you don't want to acknowledge them.
And back to your original post, sure, all of this is your choice, as it should be. But that doesn't change any of the facts of your Her+, highly aggressive invasive cancer, as much as you would like it to. Afraid of being highly dependent on your children? Afraid of side effects? It sucks, no one wants cancer, but uncontrolled cancer is your biggest side effect, not treatment. Uncontrolled cancer is what will really make you dependent on your children, whether you really want to acknowledge this or not.
0 -
Thank you for your post above. That really hit home with me. ;-(
After being diagnosed with "stage one" (Invasive), I had felt relieved, especially later, when I was told the margins were clear and so were the lymph nodes. - Of course, only a while later it dawned on me, that being grade 3 was very important, and that my risk of recurrance based on the grade was going up significantly.
So after lympectomy, I followed my treatment recommendation for chemo, which I started last Friday. 4 x AC followed by 4 times taxol (biweekly each). After that, I am supposed to have 6 weeks of radiation and 5 years of tamoxifen. This is the route my conventional oncologist (at a top rated cancer institute) wants me to do.
Yesterday, I finally had my appointment with a naturopathic oncologist, and was rather surprised about his differing treatment recommendation. First off, the told me that although my lymph nodes were clear, the doesn't mean they were not affected. He said because of the location of the caner in the left breast (8 oclock), it could have very well drained into other lymphnodes, not the one in the axilla. - I don't get it, doesn't the traces in the sentinal node biopsy suppose to show the surgeon where the darn cancer drains?!
Next, the naturopathic onco suggested a somewhat different approach to treatment, too:
A different type of AC, and weekly (rather than biweekly), followed by Taxol, also weekly.
He didn't say anything different about radiation, except that he acknowledged the risks involved (for lungs, and especially the heart) more than the other onco MD - particularly addressing the fact that it is my left breast.
Next, he pointed out that I was not really a good candidate for Tamoxifen because of my previous cardiovascular problems and high cholesterol levels. - I brought that up with my regular onco weeks ago, and she totally played the risk down, despite my health history. So whom do I believe?! And what do I decide?
I am even more confused now in terms of what to do. - On one hand I want to do everything that I possibly can to kill any leftover BR cells in my body. On the other hand, what good will it do me to get rid of those malignant cells if I will potentially get a second cancer (from the treatment) in the lungs, or heart disease, heart attack or stroke.... I'll be considered "cured"statistically if I don't recur in 5 years but die from a stroke. - Pulling my hair out, and shouldn't be... since I expect it to fall out any day on its own now anyway.... :-)
0 -
Eve - You shouldn't need a port for just the Herceptin (assuming you don't mind them starting an IV on you every 3 weeks). Chemo can be corrosive to the veins - so a port for that is very good. But there is no reason that Herceptin should be corrosive - so you can skip that surgery for the port if you don't want it.
0 -
Eve: I'm very happy to hear that your scans were clear and there is no cancer to be found in your body at this time. You have a lot to be thankful for. Somebody said to me on another thread that treating bc is kind of like the lottery. It only takes one ticket to win, and only one cancer cell to start growing and you lose. Your final decision is a tough one and I pray you find peace and comfort with that decision.
0 -
VR's point is reasonable. "Tiny" and "small" are probably different enough to be meaningful even though both are subjective, and VR deserves credit for pointing that out, given your HER2+++ status. You might be one of the small group of stage 1's who recurs. However, the researchers don't seem to get around to analzying what FAVORABLE difference there is for those whose systems have not had their immune system compromised by chemotherapy and who also have the benefit of specifically HER2+++ therapy with trastuzumab. That "doesn't count" in their "guess" about what matters and who recurs and who doesn't. So perhaps that overestimate of the size of the group is in part due to their failure to ever do the trials to find out for us just how much of a difference having an intact immune system makes in limiting recurrence.
0 -
So far this is the most understandable and though list I've seen of side effects of different chemo. It helped me tonight in feeling even better about my choices.
http://www.cancergnosis.com/Chemical Chemotherapy/Side Effects.htm
Once cancer has been detected in the body, doctors believe that leaving just one single cancer cell intact and alive is enough to trigger cancer cell growth and restart the formation of further tumors. Because of this, doctors claim that it is essential to resort to the use of chemotherapy and/or radiation after tumor eradication - even when no cancer cells can be detected. Their existence is always suspected. The whole body and its trillions of cells is subjected to potent, drastic poisons in order to assure non-recurrence of tumor growths.
Most of us during our lifetime, give growth to - and harbor in our bodies - many cancer cells and the body is able to control and eradicate these with considerable ease - as long as the general immunity, resistance and health of the body are strong. Only with that health the defenses of a healthy body can destroy cancer cells.
There are several sources readily available to you for information on drugs. Amongst the most valuable to you is a book known as the "PDR" - the Physicians Desk Reference, which is available at major book stores around the nation. Its cost is about $85.00, but well worth it.
0 -
evebarry,
One other consideration that is never mentioned and is rarely considered is that one part of the small group that does recur includes those who have done standard therapy and recurred anyway. It isn't as if that entire percentage of those with your diagnosis that recurs is made up only of those who didn't do the recommended treatment. There is always a percentage of the group with your diagnosis who DID the standard treatment and recurred anyway.
These are all common sense concepts. But as long as the majority of consumers favor doing the standard therapy, there is little motivation for them to be measured, analyzed, or discussed.
0 -
For whatever it's worth, when I hear I'm cancer free, I feel that I am. If I was told that I could have micromets then I wouldn't feel cancer free. I would make me a little concern about a recurrence...but the words, cancer free feels good. Sorry...just does. But, I have read a few testimonies of stage 1 women being declared cancer free, who in a year or so had mets. Most said although declared cancer free did the treatment of tamoxifen and some chemo.
Personally, I think the whole staging thing is screwed up. I was declared stage 1 last March with a low grade, her2- cancer about 1 C. This time, stage 1a as well. Isn't staging for treatment plans? If so, my treatment plan for the mucinious cancer, low grade her2- lumpectomy, rads and tamoxifen...although I only did the lumpectomy. This last cancer, stage 1a, grade 3, about 2 C (surgical report) demanded a mx, tamoxifen, chemo and herceptin. Same stage but different treatment. I also feel that the biopsy and the final path report if its from the same tumor or not should be included in the same dx. You can't dis regard the biopsy. Someone ask why my biopsy was 2 C. It was the vacuum type. I saw it...they literally vacuum with a wide needle most of the tumor leaving little left. I saw it on the mammo before the biopsy and after. The biopsy report said, 2 C by 1.7 C. I watched the rad dr. cut it up into several small strans in a petri dish. It was fancinating. I said to the rad dr well you took most of the calification out...just take out the rest of it. She said, no, I have to leave a little for the surgeon to make sure there are wide margins. The first bc surgeon said after my mri that only .5mm showed up so I figured according to the size they gave it on the biopsy report most of the cancer was gone. BUT...what was left most likely grew or they found more than the mri showed.
I also mentioned to my oncologist today that I've read a report that high grade dcis with the her2+ factor is the cancer that is more likely to recur...apparently I happened to be in that catergory in that I've had 3 occurrences in that breast within 4 yrs. If they had done that study when first dx with dcis then they would had known that my dcis high grade como-n type was mostly likely the her2+ is the invasive type ... or any dcis grade with the her2+ ... then a mx at that time would be the most effective way of knowing for sure you won't have a recurrence. She didn't disagree. Because a lot of even dcis grades are said to be one in the same as stage 0 we feel that our odds are better or the same. I was also told after my first lumpectomy I was cancer free. Maybe the medical establishment needs to redefine staging along with the her2+ factor for early stagers.
The her2+ does concern me. At this time I am schedule for an infusion. I may go for one, and if I see it's not for me than I won't continue. I really do have mixed feelings about doing it. The whole idea that I am cancer free, although realistically I know that none of us will ever feel completely secure about it not returning. The good thing about us being dx is we're being screened, where so many out there might have stage 2, or even 4 and not know it.
Whoever gave reason to why I don't need a port...thank you. The oncologist called to have the surgeon put one in for me. She said with the IV the herceptin after a while tends to leak and it wears out your veins. It's only every three weeks. I prefer not to have one so I'll call to have it cancelled.
0 -
AA...hear you. I've read a lot here at bco that makes me think twice about everything. Again, according to the graph my oncologist showed me first time around grade 1 with a mx ... 75% will never have a recurrence after a mx...and of the 25%...10% or 15% who are treated will recur are the treated ones. It all seems futile, one in the same...so no matter what I do it's a gamble.
0 -
Sorry for bringing this all up again today ladies...just after seeing my oncologist and feeling chemo pushed, I needed to vent.
You all are so kind to be patient with me.
0 -
Eve, I'm sorry that your appointment didn't go better today. But honestly, I'm not surprised. You have a serious diagnosis, and your oncologist's responsibility is to make you understand this and to give you treatment recommendations that give you the best possible chance of living a long full, cancer-free life.
I agree with those who said that it seems odd that your oncologist said you are cancer-free. The negative nodes and clear scans are very positive indicators but they do not tell you that you are cancer-free. What they tell you is that you have no areas of cancer in your body that are large enough to detect with the scans. Remember that you've been declared cancer-free after each of your previous surgeries and yet you've had two recurrences within a fairly short time. So obviously you were not cancer-free; your cancer was simply too small to detect at the time that you had your screenings.
As for the tumor size and staging, as I mentioned in an earlier post, this is a very confusing area with no clear rules. Certainly the staging guidelines are very clear in saying that data from the clinical staging (i.e. the information gathered from the screenings and scans), the biopsy pathology and the surgery pathology all should be considered. Whether that means that the size of the tumor should be added together from the biopsy and all surgeries is less clear, because it can't always be known whether the cancer found comes from the same tumor or separate tumors. Usually adding the sizes together isn't relevant anyway because, as SpecialK noted, "the biopsy sample is usually very tiny, and thus inconsequential to the total size of the cancer." In your case, the biopsy sample was very large and from what showed on your films, it appears to be quite certain that you had a single tumor. So while it might not be clear within the rules of staging that your biopsy sample size and surgery sample size should be added together, given what you know about your situation (you seem pretty certain that the tumor really was 3.8cm), I think that to not at least consider what this means to your diagnosis/prognosis is kidding yourself. It's not that I expect you to do this but I am disappointed that your oncologist didn't do this for you.
I decided to take a look at LifeMath. It's not perfect but I wanted to see what the difference would be between a 1.8cm tumor and a 3.8 cm tumor. Here's what I input (I think I got it right):
Age: 60 (I know you are in your sixties but I don't know your exact age)
Tumor Diameter: In "A" I input 1.8cm and in "B" I input 3.8cm.
Number of Positive Nodes: 0
ER Status, PR Status, HER2 Status: I put in Positive for all three.
Histological Type: Ductal
Grade: 3
Results: (using the pictogram graph)
- "A" (1.8cm tumor) - With no treatment, at year 15 there will be 16 non-breast cancer deaths and 28 breast cancer deaths. With an AI (but no chemo), this changes to 17 non-breast cancer deaths, 19 breast cancer deaths and 8 who survive because of the AI. With both an AI and chemo, this changes to 18 non-breast cancer deaths, 11 breast cancer deaths and 15 who survive because of treatment.
- "B" (3.8cm tumor) - With no treatment, at year 15 there will be 13 non-breast cancer deaths and 49 breast cancer deaths. With an AI (but no chemo), this changes to 15 non-breast cancer deaths, 33 breast cancer deaths and 14 who survive because of the AI. With both an AI and chemo, this changes to 17 non-breast cancer deaths, 20 breast cancer deaths and 25 who survive because of treatment.
http://www.lifemath.net/cancer/breastcancer/therapy/index.php
Interpretation of this is subjective, of course. To me, Case "A", the situation representing a 1.8cm tumor, presents a pretty compelling argument for treatment. I agree with you that quality of life is very important and like you I would not be inclined to take treatments that affect QOL for the sake of a small increase in survival, however reducing my risk of death from breast cancer from 28% to 11% (or 13% when you add in the 2% who survive BC due to the treatments but then succumb to something else over the 15 year period) would be reason enough for me to expose myself to the risks and side effects of treatment.
Case "B", the situation representing a 3.8cm tumor, to me presents an even more compelling argument. In this scenario, treatment reduces the risk of death from breast cancer from 49% to 20% (or 24% when you add in the 4% who survive BC due to the treatments but then succumb to something else over the 15 year period).
I'm actually really shocked at these numbers because they show such as large difference in outlook for those who have a 1.8cm tumor vs. those who have a 3.8 cm tumor - more than I expected. So if in your heart you really believe that your tumor was 3.8cm and it's just a technicality of staging that puts your tumor at 1.8cm, then you need to consider what Case "B" is showing. And while I know that you don't want to do chemo, consider that LifeMath includes chemo but it doesn't include Herceptin. Think about what the survival difference would be with Herceptin included in addition to chemo and an AI. And if you remain absolutely set against chemo, at least go with the Herceptin and the AI. LifeMath might not be perfect or 100%accurate but the numbers are in the ballpark and to me, these numbers are both frightening (the risk) and compelling (the benefit of treatment). I would think that this is why your oncologist was so strongly pushing you today towards treatment, even while knowing and understanding your concerns. She would not have been doing her job if she had said anything different.
0 -
People keep talking about quality of life - well I'd rather be alive even if I have sore feet when I walk or hot flushes that make me sweat all over, or vaignal dryness or whatever.
0 -
Thanks Beesie for taking the time to go over that with me.
The tumor was pallatible. The surgical tumor was found in the same place as the original tumor taken out at the biopsy in Oct 2. Were the two tumors found in the exact location? Was one slightly above the other? If they were two tumors do you only consider one tumor in the path report or both? The tumor was found under the scar tissue of the very first dcis scar, I had from 2007. I suspect the tumors is the same tumor...but, perhaps the 5mm cancer left after the biopsy grew in the 3 months so maybe the final pathology report is accurate. For this reason, I'm seriously considering asking for them to send the mx tissue to be sent to another lab, the one who did the biopsy. Again, the reason why to sent it out for another opinion is because I suspected to find dcis throughout the breast. I hate the idea of losing my whole right breast if I didn't need to. Since I was multifocal before, it would make me feel a little better about losing the right breast if I knew it was a must. Instead this time, all idc only in one tumor. I could had done a large lumpectomy with fg instead of a mx, which is such a major invasive surgery.
I don't think the size of the tumor for me ultimately matters. Because I've seen that so many women here with small size and even tiny tumors go to stage IV the size isn't a factor unless it has a blood vessel supply. The size either way for me isn not going to change my treatment because quality of life for me, my pain history and risk factors are my deciding factors.
To why I even bring this up is because I notice here at bco such discrepency of a lot of the staging here and treatment plans that I used my situation as an example. I'll notice stage II bc women without the her2+ factor or lower grade just because of one node involvment or slightly a larger tumor treatment plans are similar to those who are stage 1 or more aggressive. As I said, I noticed that some very small cancer, even tiny can be as dangerous as larger tumors. My second dcis tumor was pretty large yet non invasive and stage 0. In reality, I think women who come here are confused to how serious their stage is, or maybe they are being scared into over treatment.
With that said, I am not including later stage bc women, I am more concerned about the ambiguity of staging earlier cancers in regard to staging/treatment.
0
