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Breast Cancer Awareness Month

Mayk

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I struggled with coming back and adding a new thread. In fact just after I was diagnosed with DCIS I asked a question on Hangout and then as my diagnosis started to unfold I asked Ella to close my thread. For several reasons I'm going to start a new thread in an effort to suggest to anyone who is putting off their mammogram or anyone who thinks the new recommendations for screening are good enough for them I want to share my journey. One disclaimer, I'm on pain meds so mistakes or "overtone" should be taken with a grain of salt. I posted on a thread yesterday, went back and read it and thought who are you? ugh...the Percocet was talking and I'm not posting any more opinions.

On 9/19/15 I was diagnosed with DCIS I knew nothing about it. As I started to read about it I found it was Non-Invasive and was considered Pre Cancer or Stage 0. One thing you should know is DCIS while in itself is Non-Invasive it can change and evolve to invasive there are different grades and elements that make the choices for treatment much more difficult to make. Thanks to the thread I created a very kind PSer pointed me to a Breast Cancer website that would be my source of information and support as I worked through the pathology report and the choices I needed to make.

One, DCIS is highly controversial about should it be treated or "watched". Some treat it aggressively others less aggressively but all treatments have consequences or health impacts. I'm not a medical expert and I'm not suggesting treatment based on my decision. Everyone is different.

My diagnosis was high grade, negative for hormone receptors. This is more rare, about 20% of DCIS is negative for both estrogen and progesterone High grade has a higher likelihood of returning or evolving into invasive cancer. The consideration is that if it is already negative in the DCIS form and it returns as Invasive Cancer which could be negative for HER2 (which they only measure in invasive cancer) it could come back or evolve to a Cancer they call Triple Negative Breast Cancer. You only have to look this up one time to know it is nothing you want to ever have to deal with.

My General Surgeon after providing my pathology report details told me she was really only comfortable with a Mastectomy. Had I been diagnosed with a Low or Medium grade or been positive for either hormone then the standard of treatment would have been lumpectomy, radiation and drugs for five years post surgery and radiation. But, High grade negative status has to be addressed differently. This is a highly regarded surgeon with 20 years of breast cancer experience. She was simply wonderful took a lot of time with us and went over every option and consideration possible with every decision I could possibly make. (In 20 years should could count on one hand the number of double negative DCIS she's addressed)

My husband and I decided we wanted peace of mind and after careful consideration, including seeking an additional opinion and talking at length with the Radiologist Oncologist we elected to take the most aggressive approach. I'm one week and one day post op (10/15) and I could not be more at peace with my decision. Although a bit sore. Less than one month from diagnosis to surgery.

My final results came back yesterday. No Invasive Cancer was found, my lymph nodes were clear and all margins were clear. I'm cleared to start reconstruction and I'll be referred to an oncologist to cross our T's and dot our I's.

In the forums I read where other women came out of their lumpectomies without clear margins and second and third procedures were needed. I read about pathology reports that came back with DCIS but also Invasive Cancer that had not shown up on the MRI but had been located in the tissue. I'm unbelievably blessed and feel like I made the best decision for me and that truly my faith helped me through the last five weeks. Some days were a blur of tears and fears others resolution, acceptance and preparing.

Please if you have a history or if you have been putting off your screening don't. Mine was picked up in a routine mammogram and showed up as calcifications. One small group 2 cm in circumference. It wasn't large but had the pathology to become more dangerous had it gone undetected or untreated.

A few people close to me in the PS family have been kept in the loop and have provided incredible support. Hugs to your my friends. Thank you for your love and support.

Many, many people do not agree with the new mammogram screening parameters including many in the AMA, the breast cancer websites are clearly not in line. I also cast my vote as not in agreement. On these websites I haunted for the past five weeks I've come across many, women in their 30's, 40's and some in their 20's facing this disease. Breast Cancer changes lives and in many cases shortens lives. So this is my only public service announcement of the year. But after three friends told me they had been putting their screening off and they had now scheduled it I decided if I get one more person out there to stop putting it off I've helped someone!

Save the person your family loves and needs. Take care of yourself first so you can be around to take care of them!
 
Q

Queenie60

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Thank you for posting your journey. I too am a breast cancer survivor (15 glorious years!) and my hat goes off to your for having the courage to share your story. If it makes you feel better that you will be okay - I was diagnosed with triple negative breast cancer at 40 and had undergone extensive treatment. I'm here to tell! In summary I am quite upset about the recent announcement made by the ACS. I feel that there's an insurance company out there who has put some money in their coffers and that doesn't sit well with me. There are young women out there who will listen to their crazy announcement and may not live to tell their story one day. Shame. I will never give money to ACS again. I have supported them in the past but no more. God bless you and may you live many years. :angel:
 

Jambalaya

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Dear Mayk,

Thank you for coming back and posting; I was wondering how you are. I am so sorry that you had to have a mastectomy, but am over the moon for you that the final pathology was negative for IDC.

Wishing you all the best for your recovery,

Jambalaya xxx
 

Jambalaya

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MMiroyan|1445616739|3941354 said:
Thank you for posting your journey. I too am a breast cancer survivor (15 glorious years!) and my hat goes off to your for having the courage to share your story. If it makes you feel better that you will be okay - I was diagnosed with triple negative breast cancer at 40 and had undergone extensive treatment. I'm here to tell! In summary I am quite upset about the recent announcement made by the ACS. I feel that there's an insurance company out there who has put some money in their coffers and that doesn't sit well with me. There are young women out there who will listen to their crazy announcement and may not live to tell their story one day. Shame. I will never give money to ACS again. I have supported them in the past but no more. God bless you and may you live many years. :angel:

Miroyan, thanks for posting about your journey. So glad to hear that you enjoy good health many years later!

Triple negative is a funny thing, really. It's much more likely than other types to spread to Stage IV in the initial years after diagnosis, but after the first 3-5 years the chances of it coming back are negligible. Whereas with the more common types of IDC, the chances of mets are much less in the first years, but the risk of it coming back many years later remains high - about 33 %. But if you make it through those first years after a triple neg diagnosis, you're very unlikely to have to deal with it again. So that's a silver lining about a triple neg diagnosis (if anyone recently diagnosed with that type ever comes across this thread).

Like I wrote on Mayk's first thread, breast cancer is unbelievably complex.
 

Mayk

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Jambalaya|1445621917|3941382 said:
Dear Mayk,

Thank you for coming back and posting; I was wondering how you are. I am so sorry that you had to have a mastectomy, but am over the moon for you that the final pathology was negative for IDC.

Wishing you all the best for your recovery,

Jambalaya xxx

You my dear... saved me.. with the resources. Thank you! :halo:
 
Q

Queenie60

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Jambalaya|1445622288|3941386 said:
MMiroyan|1445616739|3941354 said:
Thank you for posting your journey. I too am a breast cancer survivor (15 glorious years!) and my hat goes off to your for having the courage to share your story. If it makes you feel better that you will be okay - I was diagnosed with triple negative breast cancer at 40 and had undergone extensive treatment. I'm here to tell! In summary I am quite upset about the recent announcement made by the ACS. I feel that there's an insurance company out there who has put some money in their coffers and that doesn't sit well with me. There are young women out there who will listen to their crazy announcement and may not live to tell their story one day. Shame. I will never give money to ACS again. I have supported them in the past but no more. God bless you and may you live many years. :angel:

Miroyan, thanks for posting about your journey. So glad to hear that you enjoy good health many years later!

Triple negative is a funny thing, really. It's much more likely than other types to spread to Stage IV in the initial years after diagnosis, but after the first 3-5 years the chances of it coming back are negligible. Whereas with the more common types of IDC, the chances of mets are much less in the first years, but the risk of it coming back many years later remains high - about 33 %. But if you make it through those first years after a triple neg diagnosis, you're very unlikely to have to deal with it again. So that's a silver lining about a triple neg diagnosis (if anyone recently diagnosed with that type ever comes across this thread).

Like I wrote on Mayk's first thread, breast cancer is unbelievably complex.

Yes, and thank you for your kind words. It is very complex. I have had a few "scary" mammograms since however everything turned out to be fine. They're extra cautious with those of us who are survivors. All of my friends get their regular mammograms and like Mayk, many of them put it off until they witnessed what I had gone through. Seems like a lifetime ago. And you're correct about the triple negative, once you get past that 5 year mark it's very unlikely to come back.

God Bless. :angel:
 

Mayk

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azstonie|1445639149|3941466 said:
Glad to hear you got good advice, care and are on the mend. :appl:


Thank you. I appreciated your info on my first thread also... I really appreciate the people here.
 

MissGotRocks

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MayK, thanks for the update. Sounds like you have had a harrowing few weeks but so glad that your outcome is good and most importantly, that you feel good about your decision. Breast cancer is scary and complex; I am so glad that you had good, experienced physicians to help you wade through the information and choices.

I too was rather dismayed to hear the new recommendations and my first thought was that the insurance companies must be deeply involved in them. I can't help but feel that insurance companies will now base benefits on these recommendations. Whenever money is involved, you can never be quite sure that the best interests of the public at large are being served.

Wishing you a speedy recovery and reconstruction process but most of all I wish you peace. I think peace of mind plays a large part in any recovery. Hugs to you!!
 

packrat

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I'm glad you took the more aggressive approach.

What are the new recommendations? I've not seen anything, so don't know.

I went in last Spring for my yearly, after having my very first one turn into an ultrasound and a lot of big and scary words and comments that weren't explained to me. I ended up going to an actual breast care place for a second opinion mammo/ultrasound and that went muuuuch more smoothly.
 

azstonie

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packrat|1445644400|3941487 said:
I'm glad you took the more aggressive approach.

What are the new recommendations? I've not seen anything, so don't know.

I went in last Spring for my yearly, after having my very first one turn into an ultrasound and a lot of big and scary words and comments that weren't explained to me. I ended up going to an actual breast care place for a second opinion mammo/ultrasound and that went muuuuch more smoothly.

Packie, go to The New York Times website, put breast cancer study into their search engine, they have an excellent article on the most recent study results and how oncologists and physicians are interpreting and utilizing them. I wrote about this in brief and then deleted it because this thread is for MayKs tremendous results and don't want to take away from that.
 

azstonie

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Mayk|1445642682|3941477 said:
azstonie|1445639149|3941466 said:
Glad to hear you got good advice, care and are on the mend. :appl:


Thank you. I appreciated your info on my first thread also... I really appreciate the people here.

You have a gold standard outcome thanks to your intelligent actions at the most frightening, crucial time. You did that :appl: I am so pleased for you!! Doing the right things at the right time with the right providers, you nailed it!
 

VapidLapid

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Mayk, I am sorry to read that you have been touched by this. I wish I had seen your initial thread.
More importantly KUDOS to you for posting this. Also for getting screening, second opinions, and taking action!! Delaying screening leads to delaying actions, and later stage diagnoses.
Big hugs to you and tons of dust for a quick, and comfortable recovery.
 

monarch64

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Just wanted to say hugs and good luck and I'm proud of you, Mayk.

Been touched by this cancer way too many times. Knew I would be way back...did one of those fundraiser walks in Chicago in 2006 and raised some money. I remember people asking why I was doing it. I knew no one at the time who had been diagnosed, but I knew that in my lifetime I WOULD know a lot of women who would be. I did it for them preemptively. I'm still glad I did. It was a great experience and I would do it again had I the means, proximity, and wherewithall.

Anyone remember Firegoddess? Her mom had BC. She was a prolific poster back in the day...always wondered what happened to her, and her mother.
 

missy

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Mary, just wanted to stop in and say how relieved and happy I am for you and how wonderful you are that you care so much about others that you wanted to share this with everyone here.

Biggest hugs my dear friend and sending lots of continued healing dust. love and good vibes your way. You are a beautiful person on the inside and out. (((HUGS))).
 

Mayk

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VapidLapid|1445654069|3941524 said:
Mayk, I am sorry to read that you have been touched by this. I wish I had seen your initial thread.
More importantly KUDOS to you for posting this. Also for getting screening, second opinions, and taking action!! Delaying screening leads to delaying actions, and later stage diagnoses.
Big hugs to you and tons of dust for a quick, and comfortable recovery.


Thank you VL. Your personal journey I know was very painful. I don't know where it started but I can't imagine the heartbreak you've been through. I sincerely appreciate your support.
 

Mayk

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Something I didn't mention I my post but wanted to is once you hear the diagnosis. I made a decision to use every resource available to me. I've now done the genetics testing (no results yet) and counseling along with spending time with several plastic reconstruction surgeons.

I think some of the most confusing feelings are shame and guilt about the diagnosis. I knew it wasn't anything to be ashamed of and guilt is silly but you start to question what you did or didn't do. The shame is why I shut down the thread. The best thing my DH and I did was go down to the Breast Center in our town and see a Psycologist with 20 years of counseling Breast Cancer patients. We took anexity and depression screening tests. Openly talked about our fears for ourselves and each other. I will very likely see him a few more times as I make my way through this journey. Changing your body alters how you see yourself and everyone is different about how the see themselves or how they would handle this alteration.

My positive test results have certainly helped me put a really positive outlook on my future.
 

Mayk

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missy|1445678595|3941568 said:
Mary, just wanted to stop in and say how relieved and happy I am for you and how wonderful you are that you care so much about others that you wanted to share this with everyone here.

Biggest hugs my dear friend and sending lots of continued healing dust. love and good vibes your way. You are a beautiful person on the inside and out. (((HUGS))).


You are the best! :halo:
 

yennyfire

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Mary, I am so very sorry that you've had to cope with all of this, but so incredibly proud/touched/inspired by your post. Your grace and courage shine so brightly! I've lost more than one friend to this insidious disease. I'm glad that you reached out to find the resources you needed to make this decision and that you've received such a great report from the doctor. Sending you tons of ((HUGS)) as you continue to recover, both physically and emotionally.
 

House Cat

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Mayk,

I am so happy to hear that you are free and clear of cancer. I wish you a speedy recovery.


I HAVE been putting off my mammogram. I have fibrocycstic breasts and I have new lumps and I get complacent. My boobs are also acting like teenage girl boobs right now, sore and growing, and the idea of squishing them doesn't sound too great to me. There is also the fear factor. As I said, there are new lumps...

Hearing your story has inspired me. I will go in next week.

Once again, I am glad you are cancer free!!
 

Mayk

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House Cat|1445697975|3941612 said:
Mayk,

I am so happy to hear that you are free and clear of cancer. I wish you a speedy recovery.


I HAVE been putting off my mammogram. I have fibrocycstic breasts and I have new lumps and I get complacent. My boobs are also acting like teenage girl boobs right now, sore and growing, and the idea of squishing them doesn't sound too great to me. There is also the fear factor. As I said, there are new lumps...

Hearing your story has inspired me. I will go in next week.

Once again, I am glad you are cancer free!!

I'm so GLAD you are going! You made my day! :clap:
 

Resonance.Of.Life

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Mayk,

Thank you for posting about your journey and the message you have relayed. You're in my thoughts and prayers, good friend. *hugs* Remember to text me whenever you want! <3 See you in Miami hopefully :)
 

Calliecake

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Mayk, I'm so glad you posted an update and am glad you took an aggressive approach if for no other reason than your peace of mind. I've gone thru this journey with two of my friends. I went to all the doctor's appointments with one of them and know how overwhelming it all can be. She also took an aggressive approach and it's been six years now and she has not had a reoccurrence. It's is so good to hear you are on the road to recovery. Please know we all here for you if you are ever feeling anxious or just want to vent.
 

momhappy

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I have tried to get mammograms annually and my reminder letter arrived in the mail a few months ago. I asked my GYN doc about it during my annual exam a few weeks ago and she said that it was fine if I waited longer to have my next mammogram (and that was even before the new screening guidelines were announced). I can certainly understand the importance of proper screening, but I trust my doctor, so I'm feeling a bit uneasy about screening every year at my age.
Thank you for sharing your story and I'm glad to hear that you are healing and healthy! =)
 

momhappy

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^Yes, it's driven by money - I read that false positives cost about 4 billion dollars a year..... Less screening = Less false positives. Having said that, I don't know if I'm 100% convinced that I need a mammogram every year in my 40's.
 

Mayk

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momhappy|1445720763|3941730 said:
^Yes, it's driven by money - I read that false positives cost about 4 billion dollars a year..... Less screening = Less false positives. Having said that, I don't know if I'm 100% convinced that I need a mammogram every year in my 40's.

I think if you are comfortable with your screening frequency that is all that matters for you. Those standards don't make me comfortable for myself or my daughter. But she will not be considered "average" now because of my diagnosis.

I've been super diligent about screening. Never missed a mammogram, did my first colonoscopy at 50 and Bone density too. While they don't catch everything there is a bit a peace knowing I've been screened and I've done what I can for being diligent. For me thses test are as important as watching my diet, regular exercise, tracking my BMI and an annual physical along with my GYN appointment. These are all things I can do to be my best.
 

momhappy

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I honestly don't know what I'm comfortable with any more. With all of the conflicting information, it's difficult to make any sort of educated decisions. I know that I dread mammograms every year (the physical pain, the anxiety, etc.) and that makes putting it off a little longer easier to justify. I'd like to think that I've educated myself enough to feel okay with not screening every single year in my 40's, but that comfort level might change as I get older. I get my gyn annual exams every year, but for the past couple of years, they haven't done a pap smear because I fit the criteria that allows me to not test every year.
 

Mayk

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momhappy|1445724696|3941747 said:
I honestly don't know what I'm comfortable with any more. With all of the conflicting information, it's difficult to make any sort of educated decisions. I know that I dread mammograms every year (the physical pain, the anxiety, etc.) and that makes putting it off a little longer easier to justify. I'd like to think that I've educated myself enough to feel okay with not screening every single year in my 40's, but that comfort level might change as I get older. I get my gyn annual exams every year, but for the past couple of years, they haven't done a pap smear because I fit the criteria that allows me to not test every year.


I did the genetics testing. I don't have my results but I may no longer be comfortable with not having a pap every year. I've actually been thinking about this.
 

Mayk

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momhappy in case you are still checking this thread. I saw this article in the NY Times and thought of you.

http://www.nytimes.com/2015/10/29/opinion/why-the-annual-mammogram-matters.html?_r=0

I think the new guidelines from the ACS have confused a lot of people. But as I saw on a couple websites many medical professionals are not in line with the new directions.

I would also agree with you my annual trips were always nerve wracking and painful. I hated them every year.
 
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