2010 Sisters
Comments
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Ladyin Bama- OMG that has me laughing! I never heard that joke! I may have to tell it to one of the doctors I "exchange" on my way out! I won't, but oh how I could be tempted.
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I thought they were called chiropractors! (no offense to any chiropractors out there)
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I wish the docs would go to the BIO conference I attend every year....that is where the researchers are...these folks really open up about what the deal is on whatever it is they are working on....scares the bejesus and gives me hope at the same time. Funny true story here...I was wandering around the conference hall and noticed a lone, rather frumpy woman standing at a display...being that I am a major nudgenik that thinks it is my job to make everyone on the planet happy who looks lonely or sad...I went up to her...thinking she was someone hired to stand there and hand out brochures for the small biotech company...or a low level employee drafted to do so...anyway, I said hi and asked about what the company was focused on (I go to try to find out if they are building a new facility or expanding one-that is what I do for a living-report on that kind of stuff for the life science industry) anyway...she said no, just a small group working on a particula focus and that they rent lab space until further along...I told her I felt bad that she was stuck at the booth...she said..I had to give my employees a break...I will be giving a talk in about an hour...SHE OWNED THE FRIGGING COMPANY...once launched she came to life and became exceedingly not frumpy (how rude we are or at least I am to be deceived by appearances) and proceeded to tell me she had discarded her former target of curing MS but instead was working on "resetting" the gene to not go off until someone was very old...like resetting a clock...unfrigging believable to me! If it worked, that hopefully it could be applied to any number of conditions that could be identified through the genetic makeup of a person..I told her how fascinated I was and she said yeah, too bad we can't come up with more for us women that works. That funding for women's health issues were exceedingly hard to come by from the feds. That the best she could hope for is that the science would be applicable to other things...ie. breast cancer of a genetic origin. Of course I had no idea I would be in the "mix" just two short years later- i ddidn't have the type that could eventually be reset like she was talking about but...It just gives me hope that there are brilliant folks like that out there working to help us all...their goal is to develop the treatment and then big pharma will buy them and fund the research left and then go on to produce the drug...it is just prohibitive cost wise for a small biotech to do so...a big name drug costs roughly 1 billion from "bench to bedside" yikes...so, what a lot of companies are doing now, thankfully, is watching these small companies for promising courses of treatment and funding them...phew...sorry for going off like this but I love this stuff...
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I am so lucky with the onco that I have. He tells me of new things that he has read in the latest journals and reports. He also keeps a watch out for any clinical trials that I would fit in. Wish I you all could find docs like mine.
Hope everyone has had a restful weekend. Amy Jo
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Hi Omaz, I am only concerned with poss of blot clot, have had PE and surface clots in the arm during my first round of chemo.
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How are you? Yes my current onc had been treating me when I developed the clots, He fells that they were caused by the Avastin trial drug, and that I will be fine now if I step up excersise and stay on coumadin. I have not started the Tamox have the RX but want to speak with Boston MD. He left a message here on Sat for me that he would call me again Mon with tumor board info, he did say they were basically unanimous in the opinion for Arimidax and shots etc. My Onco is affilliated and does not agree with them? I need stats, but I am leaning to Tamox for 1 yr and then change...Kaz
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Kaz - hope you get all the information you need to make the right decision for you. Prayers are with you.
rad tx are going well, I have completed 10 of 30 so I am 1/3 of the way. Miadrem cream and emu oil are doing wonders at keeping my skin in great shape. Wish there was something that would help the fatigue as much. I am so tired all the time and it seems to be getting worse.
Hope everyone has a restful evening. Amy Jo
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OK ladies Monday finally came and i went to see onco for the first time since i did the rads.
I was so ready to have a boxing match.well i was soo wrong.she listened to all my questions and answered every one of them including the one about rads increasing the risk of heart disease.she knew all about that.In her words only if you have heart problems already.the new technology protects the heart.dont worry.
About the meds.no no no.i thought she would throw me out.i told her i did surgery,rads,im ned low stage low grade 70 yrs old and i dont want them.i changed my diet,exercise,take my vitamins,will do blood work whenever she wants,can i take some other suppliments and she said just tell me which ones and i agree with you.see me in 3 months.you look great.THANK YOU GOD.huggggggggggs K
i just wanted to add my onco score was 10 so i didnt require chemo.I feel so blessed.now all i need is my SIL to come out of the coma and my GD to have her baby and im a happy camper....
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grannydukes-so glad your onco listened to you. It is so important, that is why I found new one.
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She hugged and kissed me when i left.thats when i knew i did the right thing.She is very good friends with my internist and uses my gastr dr.so i do have a wonderful team.I did not expect her to agree with me on the meds.I AM SOOOOO HAPPY.
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I am soo happy for you Grannydukes - some very good news indeed!!0
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{{{{{{{HUGS}}}}}} to you Grannydukes! xoxo
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Hi AmyJo, I did speak with my "Boston Onc same info as on message. After discussing my situation again I decided to wait until I see the Hemo on 3/10. She will do the screening for gene mutation and then I will have an answer as to which way I go. So I've decided to not decide just yet. Boston Onc thinks this is smart as long as I don't wait longer than that to start some kind of hormone therapy. Sorry you are so tired, has anyone suggested that you force some excersise? I had to laugh when I was told that. This is so hard but I have been on the couch alot and have not started rads yet. I rise very early and am able to be on my feet running around for 5 hrs and then I hit the wall. I have a weight room with lots of equip so I spent three days rearranging and planning to use it ha ha. Maybe today! Sending you some warm hugs and hoping you are doing better. Kaz
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I have just updated my diagnosis I have my path report now following surgery. I had IDC and DCI and many foci in every quadrant.Did go to 2b instead of 3b so I think that is somewhat better...???Kaz How did all this happen in one skipped year of mammo?
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good news granny and kaz, yes IIB is better than IIB. And you underscore why the mammo is so vital. The BC in me would not have been "felt" as it was only 5mm. And I almost blew it off last October...that SCARES me.
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I just got a reminder in the mail that it was time for my annual mammogram. Good reminder but now don't have any breasts to check. Talked with a lady at lunch yesterday that she was past due on hers. Told her as soon as she gets back to her desk to call and set up an appointment not to wait any longer.
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Ladies, I definitely think mammos have their place, but they are not a guarantee that everything is clear. I had 14 mammos in 14 years, all clear. I found the lump myself. My BS said it could have been growing for 5-10 years. She said that up to 30% of women are "mammo occult" meaning that their BC is not visualized on mammo. This is especially true with women who have dense breasts. Lots of good info here on areyoudense.com. Keep getting those mammos, but if you feel something, don't assume it is benign, get it checked out. Make sure they do an ultrasound which can see things better along with a mammo if you have any symptoms.0
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Designermom - What is the best followup screening for those of us with dense breasts? I also found my lump.0
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Omaz- My BS is rotating mammo plus ultrasound at 6 months and MRI 6 months later. I am scheduled for my first mammo + US this month. I am just learning about all this. Apparently they now grade how dense your breasts are, but you need to ask.
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Thank you DM-I too found my lumpit hurt.i hardly every went for mammos.but I will go now.and I too have very cystic breasts.Just today I found another lump in the other breast but it didnt hurt.I still have lots more.
In april I see the BS.im gonna request it.Thanks.xoxoxoK
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Hey there ladies,
I also had my yearly mammograms and they were all "clear" and I got a lump and had it checked out and that is when my BC was diagnosed. Like DesignerMom, they said my could have been there growing for 5 - 10 years. I had a mamo 6 months before the lump and it showed nothing. Even the sonogram showed nothing conclusive. Only when they did the MRI did it show anything and even that only showed a small portion of what was really there. It did not show anything in the left breast and just a few spots in the right. I had decided on the BMX and during that surgery was when they found the extent of the cancer. It was everywhere in both breast and the lymph nodes under my left are were so matted together it was like one lump of stone. It was so deep that no exam ever revealed that it was there. They scraped as much as they dared without causing me to lose the use of my left hand. (I am left handed!) The nodes they removed from the right all but 1 had cancer an were getting hard, they just had not matted together. My BS said is was a good thing I had ignored her initial advice and gone ahead with the BMX. And it was at the point that no additional surgery would be of any benefit for me. Boy I can tell you that is really scary to hear. I went from them thinking they had caught it early and it was going to be maybe at Stage I to Stage IV in a matter of a couple of weeks. I did have very dense breast tissue and they told me that was why the mammograms never saw anything and the sonogram was inconclusive. Upshot of all this information is ask if you have dense breast tissue and if you do, get your yearly mammograms, but also alternate including sonograms and MRIs with them. If you do not have a baseline Mamogram (never had one before) get one and be sure future mammograms are compared to that one and not just the most recent one. I did not have any symptoms that would have indicated to my GP to check for cancer. By the way the lump I found did not ever hurt. Don't take any thing as just part of getting older or insignificant and keep getting those mammograms, sonograms, and MRIs. Never assume that you are part of the 70% that a mammogram will reveal any cancer, instead that you are like me and part of the 30% that a mammogram alone will not reveal the cancer. It never hurts to cover all your bases.
Amy Jo
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AmyJo, I am on the get your breast exam soap box!!! Good info and advice from you. I have many people spreading the word, when ever the subject comes up or when there is an opportunity to mention it. Pass the word, pass the word...Kaz in rereading my path report I see that tumor # 2 was grade 3 ,and tumor 3 was grade 1, these larger ones had grades the smaller ones did not...
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I so totally agree. I also have dense breast and have to alternate mammo's and MRI's. I have had clear mammo's for 13 years and mine was only found on MRI ruling out something else and found this cancer. totally accidental that it was found and my BS also said it had probably been growing for years. I have scar tissue from a previous surgery so you could not feel the lump as well.
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Amyjo, DM - I am going to talk to my onc and push to have MRI followup too. What a sneaky awful disease.0
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GD - so glad you have an onc who is on your side. Wish mine was. Sigh. I may change, if I can find another who is not anti-alternative.
AJ, so happy you are 1/3 of the way through. I found the fatigue was difficult for me but what really worked was naps and 10 hours of sleep a night.
Kaz, so very happy you are up a stage! Great news.
Regarding mammos, I am very fortunate an that the mammo discovered my BC. No lump was evident. I had dense cystic breast when I was younger but they resolved as I aged. I, too, beat the 'Get your mammogram' drum. It worked for me but I also tell folks if they have dense breasts. insist on US and or/MRI.
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Hey Barb---I keep missing you..how is your brother doing?????0
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Bro is slowly getting stronger. His BP is real low (runs in family) and when he went to the ENT doc yesterday, he passed out twice so she sent him to ER,. They said he was dehydrated (I have told the bozo to drink at LEAST 2 liters of water a day) and they gave him 2 bags of saline and a shot of insulin. You would think the dude has a death wish. Thanks for asking, Karol!
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amyjo- Well said, my friend!
The thing that gets me is this. All my cancer doctors are working like crazy with surgery, rads, chemo and hormone blockers to squeeze a couple extra statistical points out to knock down my recurrence, sometimes less than 5%. From what I can see, mammos have up to a 30% failure record detecting BC, especially with dense breasts. Is that not statistically huge??? Tons of ladies like AJ and me are living proof. You can go to areyoudense.com and read testimonials from many more. WHY is there not more in the news about this? I never ONCE heard that mammos don't detect cancer. I got my yearly mammo for 14 years and assumed I was "all clear". Don't get me wrong, I think mammos are important, but maybe there needs to be a new, additional campaign for women with dense breasts to get ultrasounds too.
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DesignerMom I so totally agree. No one ever told me I had dense breast until I read my mammo reports. That on top of ADH and I was high risk and never knew it. Mammo did not show my tumor and I have had them yearly for 14 years as well.
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DesignerMom: For years, I was told "you have dense breast" but nobody ever explained what that meant nor was I told that having dense breast makes it hard to impossible to accurately read a mammogram and that I should have other types of screening. I put a link on my Facebook page a few weeks ago to the areyoudense site and urged my young friends to please talk to their doctors about this. Like so many others, I was told my tumor had been growing for as long as 8 years. They even could see where it was on last year's mammo after they knew where to look!
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