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Posted on: Sep 5, 2019 03:29AM
How has BCO helped you make sense of complex medical information or helped you make treatment decisions? We're looking for specific feedback about how your experience with BCO has impacted your breast cancer screening, diagnostic, and treatment decisions. Any and all help is appreciated!Log in to post a reply
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Posts 1 - 29 (29 total)
Sep 5, 2019 06:10AM OnTarget wrote:
BCO has had three major impacts on my breast cancer experience: background information on all aspects of breast cancer, articles on the latest research news, and access to other survivors who add to my knowledge on research and anecdotal experiences. For decision making on treatments, BCO has had a positive impact by pointing me in the direction of research which informed my decisions.
In my case, I'd recently had BMX surgery and had my oncotype score run. My score was 16 (intermediate), and the printout stated that my 9 year distant recurrence risk on Tamoxifen was 4% and that my absolute chemo benefit was less than 1%. Obviously my MO did not recommend chemo and I was prepared to move on with reconstruction and hormonal therapy.
Fast forward a few weeks, and BCO posted the latest TAILORx results which combined clinical risk with intermediate oncotype scores: https://www.breastcancer.org/research-news/adding-... . The BCO article in particular highlighted that most women can skip chemo, but I noted that the article was less clear about my situation: high clinical risk and under 50 years old.
I read the abstract posted in the BCO article, and from there I pulled up the full text of the article in The New England Journal of Medicine "Clinical and Genomic Risk to Guide the Use of Adjuvant Therapy for Breast Cancer". Upon reading that, I found that my recurrence risk was in fact closer to 12% and my absolute chemo benefit was 6.5%.
This information caused a great deal of consternation and activity for me. I met with my MO who is at a top hospital and I also went for a second opinion from another top hospital. One challenge is that the TAILORx team and many experts had noted that they believe that the reduction in recurrences was from the ovarian suppression of chemo in women in their 40's, not from the cytotoxicity of chemotherapy. From my point of view- they'd proven that chemo will help reduce recurrences and they were only theorizing as to whether ovarian suppression would have the same effects. Ultimately, the decision to do chemo or not was left up to me. I chose to do chemo, which I hope will give me the best chance of avoiding a recurrence.
Sep 5, 2019 07:54AM LeesaD wrote:The reason I decided and pushed for an ALND after finding micromets in my sentinel nodes is because of the knowledge and research I had done on BCO. Micromets in sentinel nodes is a grey area as far as radiation, chemo and ALND and I must’ve read every single thread on the subject. I’d google micromets and all searches usually led me to another thread or article on BCO. I was naive to any/all things breast cancer and when I had gotten surprise after surprise after surprise results from my doctors I said to myself what the hell is going on with them and I need to educate myself. I blindly trusted them in the beginning. My doctors were wrong in everything they told me...tumor is tiny 6 mm’s when it was actually 3 cm’s. No node involvement according to sonograms and MRI when then 2 nodes had micromets...then told no need for radiation or ALND as chances slim to none no further nodal involvement...then found 2 fully positive nodes after I had to push for ALND. I did my own research on here and went with my gut based on the information from members here. If I had listened to my doctors I would have had just my BMX, no radiation, no ALND, no chemo as Oncotype was a 3 and still would’ve had 2 positive axillary nodes that I wouldn’t have known about. I cannot convey enough how that thought to this day makes me nauseous. The knowledge I gained from this site empowered me to be confident in all my decisions from the ALND to having an oopherectomy and going right to AI’s instead of tamoxifen even though I was pre menopausal. I remember going in for a meeting with my MO as I was coming to end of radiation and and we were going to discuss next step of tamoxifen or AI’s and I posted that I wanted to be prepared and didn’t know what questions to ask. A member explained the difference to me between the two medications and what they did and why they did what they did and gave me links to the SOFT trial which I then read. I went in to the appointment knowing what I wanted to do (suppression with eventual ooph and AI’s). My MO explained to me he wanted ooph and AI’s based on SOFT trial and I was like ok we are good and on the same page. This site has been invaluable to me. I can only share my personal experiences and hope they have helped others but some members on here are more knowledgeable than doctors. I am forever grateful to this site. I have no regrets about any decisions I’ve made since becoming a BCO member.
Sep 5, 2019 08:40AM illimae wrote:
BCO has served me well in confirming what the standard protocol is among BC subtypes and at various cancer centers, which allows me to be well informed when my MO and I have discussions.
I am also thankful for the breaking news and research threads (lumpies and others), so we know what else is out there as complimentary or future treatment options.
Sep 7, 2019 12:01PM TAB55 wrote:
In 2012 when I was diagnosed, I read an article in BCO about a 2010 study of tumor's genes on women who, like me, were post-menopausal and whose cancer was in three or fewer nodes. (Their initial work, which was reported in 2005, only looked at women who did not have cancer in the lymph nodes.) Based on the recent research, my doctor agreed with me that I was a good candidate for the Oncotype DX test which looks at the genes. I really didn't expect good news, but I was thrilled when the results of my test showed that my cancer had only a 10% chance of recurrence without chemotherapy. I was ecstatic about the results, and my doctor agreed that I didn't need chemotherapy. That was over seven years ago, and I'm happy to say that I avoided chemotherapy am still cancer free. Thank-you, BCO!
Sep 8, 2019 02:08AM Peregrinelady wrote:I was adamantly opposed to reconstruction until I read the 2013 DIEP thread and found that most women said that even though it was painful they would do it again. I am so glad I read about their experiences as it helped me to prepare for the surgery and know what to expect. I don’t think I would have had reconstruction if not for this site and the surgery was instrumental in my psychological healing.
Sep 18, 2019 04:47AM Calico wrote:
Absolutely. It was on this board where I learned from information provided as well as from other survivors about increased chances of a secondary cancer in the same breast, sentinel lymph nodes, dose dense chemo, treatment incl. oophorectomy/hysterectomy, reconstruction etc. to be able to go on Aromatase inhibitors. it helped greatly in my treatment decisions as well finding another cancer. Still here and thankful to all of you
Sep 20, 2019 04:34AM - edited Sep 20, 2019 04:38AM by Spoonie77
I know that I am like so many other members here at BCO; beyond thankful and appreciative!!!
BCO specifically helped me in a number of ways since I was diagnosed with Breast Cancer in 2018. Not only when it came to decision making and treatment choices, but also in understanding imaging, figuring out the "no-mans land" of survivorship, and most importantly of all; no matter the time of day or night, not feeling alone in the middle of the storm that cancer brought into my life.
The list I could compile of the various ways BCO impacted my life extends far beyond the few I'll list here, but of these, I can say with 100% confidence that being a member helped me maneuver them more successfully and proactively than I would've without this site.
These decisions included:
Reading here that other patients were encouraged to have a second pair of eyes look at their situation helped me find the courage to do so in my own case. Having not been in the Cancer world long, I was thinking of the decision from a purely "polite" perspective. It was hard to not think that my current MO would take it personally. I've learned here that there is polite and there is prioritizing being your own best advocate. After all, there are plenty of doctors in "the pond" per se but we, as cancer survivors, need to take our BEST shot at beating this beast the first time around. For me, if I had not sought out a second opinion, who knows when or if I would have found out that my true risk of recurrence was really between 28-35% without Endocrine Treatment and that it INCLUDED the risk of METs. This was not at all close to the understanding I was under from conversations with my first MO, which was that it was about 22% and did not include METs. When I heard this new information during my consult with my second opinion, I gave Tamoxifen another look and decided to try it because of the higher risk I was now under. Again, this was not something I knew previously and I hate to think of how severely not knowing accurate information could have impacted my long-term survival.
My first MO never mentioned these to me during any of my appointments after my Lumpectomy. If not for BCO, I would not have known that these blood markers/tests existed. Still to this day, I'm shocked at the marked differences in care between my first MO and my current team, including their ideas concerning the standard of care in younger women with Breast Cancer. Nothing is a guarantee of course, but for me, I feel more confident having an extra tool in my belt thanks labs that monitor CA 15-3, CA 27.29, and CEA. BCO and its amazing members showed me that these were available and that women were being monitored for them, and I could be too.
My Oncotype came back at 18. My first MO told me that number meant that with my age (41) and tumor characteristics being so overwhelming hormone positive that the benefits of Chemo might not outweigh the risks, but that it was my call to make since my Mammaprint. cancer was an intermediate risk of recurrence. I was unsure of what I should choose. I was in the Oncotype "grey" area. Reading here on the forum, I learned that there was another test, called Mammaprint that worked in a similar but different fashion. It could serve as a second opinion of sorts in my case since there are no "grey" areas in that particular test, only high or low risk. I discussed this with my MO, and though they did not want to order it at first, I made it clear I would not have peace of mind without a second opinion test. In the end, they ordered it and it came back in agreement with my Oncotype results, that chemo would be of little benefit to me. Though time will tell if I made the right call on chemo or not, in the meantime I live in peace with my choice to forgo it.
Dense Breasts and Imaging Surveillance
My first MO after surgery believed that a standing order of 3D Mammograms every 6 months would be sufficient for monitoring for recurrence in my case. I didn't know anything different. Seemed reasonable to me. However, after reading here on BCO, I learned that many women who are younger and have dense breast tissue, like myself, found more benefit and earlier detection of recurrences by having alternating 3D Mammos along with Breast MRIs. Knowing this was available and backed up with studies supporting its significance in the montioring of younger woment with Breast Cancer I took this info to my team and asked their thoughts. They were agreeable and implemented the changes to my imagining schedules. Again, it boggles my mind that even though the research is there supporting that these tools are more effective ways to monitor people in my age range, etc, it was still left up to me to suggest it to my team. It wasn't an automatic for my first MO. For my second MO, it was her standard of care. Again, more proof that we need to continue to be our own best advocate. Not always will we be offered the best care unless we know what the best care is that is available in general and ask for it to be implemented in our care. Knowledge is power and I am daily thankful for the vast amount of knowledge that's here to inform and educate survivors, like myself, on treatment choices.
Again, these are just a VERY few of the ways that being a part of BCO helpful, informative, and caring community has improved the level of treatment and surveillance I've received while traveling through the Breast Cancer world. I'm in debt to the wonderfully kind members and moderators here. Everyone that participates has my deepest thanks and appreciation for their contributions that continue to make this site a priceless aid to those that are newly diagnosed and those that our alumni.
Sep 21, 2019 05:47PM Spoonie77 wrote:
bumping for the weekend readers
Oct 9, 2019 03:39AM Spoonie77 wrote:
Oct 9, 2019 04:03AM - edited Oct 9, 2019 04:04AM by mightlybird01
Unfortunately, I only found BCO after all my chemo treatment decisions were made. I am a scientist so first and foremost consulted the medical literature at the time. But being triple negative I had not much choice anyway. Since then I learned tons reading the various threats and I feel very knowledgeable when meeting with my Doctors.
After discovering BCO, it was so helpful getting through chemo with the members of my "chemo group" exchanging experiences and cheering each other on.
With respect to surgery options, I mostly did my research on BCO, skipped the scientific literature altogether. It has helped me enormously making up my mind about whether to do mastectomy or not, how to prepare for surgery and what to expect after. Somehow the experiences from actual people, who underwent all those procedures trump statistics.
So thank you for keeping this forum and thanks to all who contribute their experience.
Oct 9, 2019 06:04AM rozem wrote:
when I was first diagnosed I was thrown in to chemo within a week - I didn't have enough time to ask enough questions or get a second opinion. At the time most cancer centers here in Ontario did not do neo -adjuvant chemotherapy. In fact everyone I told always looked puzzled as to why I didn't have surgery first - including women who were diagnosed with BC
I was so completely stressed about my treatment protocol (did I do the right thing, should I have waited etc) until I found BCO. Here I connected with many women with similar diagnosis' (her2/triple neg etc) that had chemo first and were being treated at the best centers in the US
Fast forward 8 years since my diagnosis and neo adjuvant chemotherapy is routinely used here
I am forever grateful to my team at Sunnybrooke Hospital for their cutting edge treatment and BCO for calming my fears during a very difficult time!
Oct 9, 2019 11:21AM MinusTwo wrote:
I found BCO with my original diagnosis and BMX. I drifted away after figuring out surgery, bras, etc. Since then I've had a recurrence, chemo twice, rads, herceptin for a year, etc. I learned a lot before my first surgery and was very grateful for this site. When I had a recurrence 2 years later, I absolutely relied on these threads to see what others with a like diagnosis were experiencing. Oops - then I got neuropathy & learned about that. Then I got lymphadema & learned about that.
I am here. I follow fewer active treatment threads. I do follow the book lovers thread and the dinner thread & a few others. In the last 9 years, I have met BCO members whenever & wherever I traveled. What a privilege. Thanks BCO for providing this forum and the reliable information you provide every day.
Oct 26, 2019 04:22AM Spoonie77 wrote:
Nov 12, 2019 04:02AM MinusTwo wrote:
and a third bump - come on ladies & gents. Let's give them some feed back
Nov 12, 2019 05:16AM Beaverntx wrote:
I have learned so much from reading about others' experiences, helps with interpreting my own. For example, I will be discussing Tamoxifen dosage with my doc next week due to hearing from others about SEs that are NOT in the prescription information.
Dec 12, 2019 02:46AM Spoonie77 wrote:
Dec 12, 2019 02:53AM DorothyB wrote:
With an oncotype score of 29 and being over 50, I was faced with the decision about whether to do chemo or not. There are a lot of knowledgeable people here who bring up really good points, publish helpful websites and links to studies, etc. I opted not to do chemo and am very comfortable with my decision.
Feb 13, 2020 02:17PM Yogatyme wrote:
I have been helped by BCO more than any other resource, including my providers, who are excellent but can’t be available in the way this forum is. The support and encouragement are priceless, and knowing everyone has been there is comforting. I have learned so much about breast cancer.....I had no idea bc was not just one disease! I love the research articles and all the knowledge of so many members.....Beesie in particular. I learned hereabout the online recurrence risk calculators that were extremely helpful when making a decision about an AI and last, but not least, I like several of the game threads, dogs, dogs, dogs, cats, cats, cats and photos. These threads bring a smile to me every day. Thanks for all you do!
Feb 13, 2020 08:06PM farmerlucy wrote:
I found BCO when I was having my first excisional biopsy. It was my “go to" as I counted down the months to a preventive mastectomy. The Feb 2012 surgery sisters were a godsend. Then, when my worst fears were realized and invasive cancer was found, I reached out in my despair and many sisters were there to hold me up and keep me going. I can't tell you how many times I learn of a procedure, genetic test, new method of screening, whatever, long before my doctors know of it. The folks here get it. I also watch for those who may be crashing due to PTSD. I struggled terribly with that and it was a condition that was all but ignored by my doctors. I've also felt a great need to "pay it forward". That is part of the reason I hang out here eight years later. The other huge part it to keep an eye out for new advances in screening for my own precious daughter. She is going in to start her own high risk screening soon. This dark cloud of breast cancer has hung over my family for many generations. BCO has helped bring it into the light of knowledge. Said knowledge chases away a lot of the fear and only makes me stronger.
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