TRIPLE POSITIVE GROUP

AA - I think the more common side effect of Levaquin is the one you mentioned with the tendon issues - I had a classic allergic reaction, with a rash from shoulders to knees that was so extreme that I had edema under the skin that you could push with your hands a make an actual wave with.  Fortunately that kind of reaction is easier to deal with than the tendons.  Unfortunately, it was compounded by the reaction from the Bacitracin irrigant from the BMX which I was also allergic to!  You commented above about Tamoxifen and breast density and the thought that less estrogen was helpful - my understanding is that Tamoxifen doesn't suppress estrogen, it only blocks the receptors on breast cells.  I wonder if the density is improved when the receptors are blocked?  It also makes me wonder about the correlation between density and breast cancer - I know there is awareness of density making diagnosis more problematic, as it was for me, but are there stats for density and incidence?

BUT in the meantime...

Given their observation that it may be possible to tell which women benefit from tamoxifen's ability to block the receptors and which do not through the obvious reduction in density for those women, that may be worthwhile in deciding which women should be on the drug.

In my case....perhaps in part because I was 50% PR positive and 95% ER positive, who knows... I likely benefitted from the complete loss of breast density within 3 months of starting treatment. Since the mammograms I had were 3 months apart, that is the only available information I have and it is possible even that in a lesser time, a month or just weeks might have been plenty.

What no one could say for sure is whether I also happened to be one of those HER2 positive patients who eventually would have a worse outcome and not a better one, if I stayed on tamoxifen for a longer period of time. HER2 positivity can involve cross-talk. So it is possible that while I benefitted from short-term use of tamoxifen, I also may have benefitted by dropping off tamoxifen when I did.

My wife was told she had dense breasts so I wonder if maybe they missed it in an earlier mammo.

Are they're different drugs for estrogen? I know about tamoxifen but I see other names mentioned. Also, my wife is only 15% ER + so would that make tamoxifen less effective?

All my bloodwork was uploaded to my site, so of course I have been poring over it. ONC said it was all normal, and it is but just barely in some cases.



To you medical folks. Is just barely Being in the normal range the same as being solidly in? Sure wish the white count was a little higher also.









WBC 3.2 - 11.0 K/CUMM 4.6

RBC 3.80 - 5.20 M/CUMM 4.58

Hemoglobin 11.6 - 15.2 G/DL 14.6

Hematocrit 34.4 - 45.6 % 44.0

MCV 78.0 - 100.0 FL 96.1

MCH 27.0 - 31.0 PG 31.8

MCHC 32.0 - 36.0 G/DL 33.1

RDW 11.5 - 14.5 % 13.5

Platelets 150 - 450 K/CUMM 173

MPV 7.7 - 11.2 FL 7.4

Diff Method Electronic WBC differential count

Segs Relative 44 - 74 % 58

LYMPHOCYTES 20 - 50 % 32

Monocyte 2 - 13 % 6

EOSINOPHILS 0 - 7 % 3

BASOPHILS 0 - 2 % 1

ABSOLUTE NEUTROPHILS 1.3 - 6.0 K/CUMM 2.7

ABSOLUTE LYMPHOCYTES 1.5 - 3.5 K/CUMM 1.5

Absolute Monocytes 0.0 - 1.0 K/CUMM 0.3

ABSOLUTE EOSINOPHILS 0.0 - 0.7 K/CUMM 0.1

ABSOLUTE BASOPHILS 0.0 - 0.1 K/CUMM 0.0

General Information



Alaska-we just got back from your beautiful state last month. What beautiful country you live in.



Art, my onc said first we treat the most serious part with herceptin and chemo, then we move to the next thing to address and that is the ER+ part with the estrogen suckers.



Kayb-I laughed on your comment when I thought of my breakdown. First biopsy measured only LCIS tissue, 80% positive. Second biopsy measured multifocal tumor, IDC at a much lower amount. 40% I think. So, for me, I guess I go either way.

I was at a meeting last night at my sons' fencing club - I'm on the club committee. One of the fencing masters spent the summer on a course. Fencing for women after Breast cancer surgery!!! Apparently, the aim is to help women lift the arm on the operated side (or both if it applies) using fencing positions. It's already in place and very successful in other areas in France. We're going to be the centre for Gironde. Needless to say, I'll be going along next week to see how it goes!



Nicky

Cypher,

Re birads..



When a radiologist interprets a mammogram, he or she assigns a score to it used to communicate with doctors about how concerned he or she is about the findings.



Did anything look abnormal? How serious is the abnormality that was found? This and other information is efficiently summed up in one number, called the Breast Imaging Reporting and Data System (BI-RADS) score.



BI-RADS scores range from 0 to 6:

 

0: This score identifies a mammogram study that is still incomplete. The X-ray may have been cloudy, making it difficult to read the images. This can happen, for example, if you moved at the precise moment the picture was taken.



In any case, further information is needed to make a final assessment and assign the true BI-RADS score. If you’ve received a BI-RAD score of 0, you need to make sure that additional imaging is done, such as some extra mammography views or an ultrasound.



1: This score is good news! It means that your mammogram is negative (that is, no evident signs of cancer were found) and that you should continue to have routine screenings.



2: This score also means that your mammogram is normal, with no apparent cancer, but that other findings (such as cysts) are described in the report. You’ll be instructed to continue your routine screening.



3: Now we are entering a gray zone. A BI-RADS score of 3 means that your mammogram is probably normal but that there’s an approximately 2 percent chance of cancer. You’ll be asked to follow-up with a repeat mammogram in six months. And if you have a family or personal history of breast cancer, the radiologist may opt to do more tests now rather than wait.



4: This score means that the findings on your mammogram are suspicious and that there is an approximately 20 percent to 35 percent chance that a breast cancer is present. To make a diagnosis, the doctors will need to perform a biopsy to get a small tissue sample. More than 90 percent of women with a BI-RADS score of 4 can have a core biopsy performed without the need for general anesthesia or an incision in the breast. At our Breast Center, if a biopsy is warranted they are commonly performed the same day the mammogram is read. Nationally, the rate of open excisional biopsies is much higher than necessary. Our rate is very low; more than 90 percent of biopsies done here are core biopsies.



5: This score means that your mammogram results are highly suspicious, with a 95 percent chance of breast cancer. You will need to have a biopsy for diagnosis. Talk to your doctors about what course of action to take.



6: This means that you have already been diagnosed with breast cancer and the pathologist has confirmed the diagnosis.





Thttp://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/breast_cancer_screening/digital_mammography/breast_imaging_reporting_data_system.html

cypher - as long as they are still in the normal range I wouldn't worry too much.  They can be high due to treatment, so what looks like a downward trend can actually be a resumption of normalcy.  As long as the trend does not continue to a less than normal level I think you are good - if it goes too low it can be a signal of a vulnerable immune system.

cypher,

Some PCPs and oncs will have patients get routine lab checks periodically after treatment with the CA 15-3 or the CA 27.29. These tests measure inflammation (as I understand it), which can be an indicator of cancer but also is an indicator of other conditions that produce inflammation. So.... they can be inaccurate for patients who have other conditions that produce inflammation.

What I was suggesting is that even though they can be inaccurate for patients who have other conditions that produce inflammation, it still might make some sense to have patients who have particularly dense breasts but with no cancer visible, to have one of the markers done just to see if it is high or not. If it continued to be high on repeat testing and the patient's medical provider can't find any other cause for the inflammation, it could then be considered as just one additional factor helping medical providers and the patient to make a decision about whether to have other imaging, such as an MRI or an ultrasound, etc.

fluff,

It is hard to have a sense of what is normal and what is not because chemo is an abnormal thing to do to us. I was 52 at time of tx and my labs took almost a decade to return to normal so I was pretty upset at first too.

ashla -- nice BI-RADS explanation! Sorry to say, in my case the Alaska "breast cancer specialist" surgeon I saw initially did not biopsy even after receiving two BI-RADS 4 reports 3 months apart for me, and failed to even set me up for a repeat mammo/ultrasound for the third so I set that one up myself. It really can pay to understand things like what a BI-RAD score means. Because she had done that not only to me but to other similar patients, I later tried to hold her legally responsible for that. But because of the legal principle that one has to prove cause and damage and the fact that I have never recurred after being treated, I was not successful. There are some wonderful surgeons out there (like mine in Seattle), and there are jerks out there with licenses.

SpecialK, thanks for the more precise information about the markers. Mine have been like yours, abnormal with chemo but within normal range now for over a decade.

Some patients don't mind if the markers are done by their provider but they do not want to know the reading because they get quite anxious if it rises even just a little. Mine have varied from 6 to 12 over time but have stayed in that range and I am not one to worry much about fluctuations.

A.A.

I haven't had an onc since late 2006. I see my Seattle BS yearly and my Alaska PCP yearly, but both of them are fine with providing scans and lab testing. My BS is the one who is pushing annual mammo + annual MRI separated by 6 months, probably because I never did trastuzumab or an AI and I did so short a time on tamoxifen. I'm also in a clinical trial for breast cancer and one for ovarian cancer so markers are done for those as well.

P.S. the BS specifically said I should NOT start either tamoxifen or an AI this late in the game, either.

Hi everyone. I'm accompaning my sister to the dr for the discussion about surgery. She's still very freaked out. She's not her2 positive, but I'm still waiting for the final info on the pathology. So far she might only need radiation. I hope so.



I was a bit annoyed at one of her friends , who was angry at her for not going to the friends dr. Her dr was the best and that was that. She kept calling and my sister started to second guess her dr. I explained that everyone loves the dr that keeps them alive. Her dr is very good. I checked her out. I believe in second opinions , but to insist that she change drs. Not just a second option I thought was in poor taste. She's freaked out as it is.

Thank you all for your support. This board really helped me get through the worst of it. Even when I didn't post. I felt such support. You all understood. It's so freaky that we both were diagnosed in a year. Does anyone know if she's being tested for the braca gene does that imply I have it automacally??? I'm seeing my mo next week and will ask.

It raises new questions. Not sure if it even makes a difference for me. I have a son.

Ang sorry about your son.

Chicka. Good luck.

Shasha, her friend sounds really annoying.  Your sister has enough to deal with without friend drama.

SpecialK, thanks for the great explanation of Birads.  I’ll have to dig through my medical records to see what mine said.  More Monday morning quarterbacking, but whatever.  What is a TM?

Shasha,

I'm glad things are moving along for your sister and that soon she'll have her treatment plan in place. I totally get how terrible it is for the two of you to be diagnosed so close together - recently my sister went for her first mammogram (she's 40) and they found a mass that's not cancerous 'but will be watched'. We're going to see about braca testing, because we both have a daughter each (mine is 18 hers 8). I worry for her now, and the future generation.



Fluff,

LOL for the implants!!! I used to take fencing classes but that's gone out the window now. For the post surgery group, the first few weeks will be just the movements used in fencing to help loosen up, after that it'll be with plastic epees! Hopefully not too much risk of injury!!

Nicky

Sasha, the way the BRCA test was explained to me was that if either your mother or your father had a mutation in the BRCA gene, then you and your sister would have a 50/50 chance of inheriting it. But even if one of you did inherit the gene, that does not automatically mean that the other sister did also. By the same regard if you were positive for the gene, you would have a 50/50 chance of passing it on to each of your offspring, both sons & daughters. When they do the BRCA testing, they check the very long line of DNA to see if there are any mutations in  BRCA1 or BRCA2, thus your results would either come back "no Mutation Detected" (negative) or "Genetic Variant, Favor Polymorphism" (positive). It is my understanding that most women who have the testing are BRCA negative. I was tested because my grandmother had BC and my first BC was when I was 41. I was negative.

There are others with more understanding of the testing, who might be able to explain it better, or add something I forgot.

Cypher, the job of the pathologist is to describe exactly what he/she sees, so you'll always see a description that sounds like it is remarkable but isn't.  Your pathologist was just talking about the dense breast tissue (fibrous) and the adipose tissue (fat).  So it is just medical speak for "breast tissue".  Necrosis is a process by which cells die and you'll see necrotic tissue all over the place in the body.  Our immune/lymph system cleans it up over time.

Shasha, the BRCA I and II tests check to see if you have a mutation in that gene.  We get two--one from our mom and one from our dad.  The gene encodes a tumor suppressor protein, so if breast cancer develops (which it does in many of us on a regular basis) the gene will be transcribed and the protein will be made to kill those cells.  What happens is if you get one mutated gene (either from your mom or dad) then you only have one gene left to protect you.  The mutant gene can be encoded to make a protein, but it won't work.  If your good gene goes bad, poof, you get your daily generated breast cancer cell and there is nothing there to clean it up, so it grows.

If your sister has a mutation in the BRCA gene you could have one too.  But you might not because you might have gotten two good ones from your parents, where she got one bad one.  BRCA mutant breast cancer usually shows up at a younger age, so they didn't even test me for the mutation, just decided I was your everyday, run of the mill middle-aged lady with breast cancer ;-)

Oh, and one of my very best friends at work was horrified that I went to the breast surgeon I did and he kept trying to make me change my mind and go to his wife's BS.  It turns out his wife saw my BS right after diagnosis and she suggested a double mastectomy without offering other options.  His wife is a bit high strung, so she stormed out sobbing.  I know the feeling of being pressured to do what others think is right and it is rough that people do that to you at such a difficult time.  You tell your sister to go with her gut and ignore everyone.  My BS is the best!

Special K, I got the old non-potassium sparing diuretic from my PCP yesterday, but she told me to try just taking the diovan (valsartan) to control my BP and see if that works by iteself.  I think she feels I've done enough dehydrating (tee hee).  So I'm going cold turkey and will check my BP tomorrow at the pharmacy and see if it is still decent.  It never was that high to begin with...

And Fluff, you crack me up!!!!!