Re: I think I'm in trouble!
 

VDC: Thank you so much for seeing through the words to the soul of what I and others want to do...to preserve the life of a smart, valuable woman! My personal journey was so much a mental game I couldn't believe how weak I was, despite knowing deeply what a coward I have always been, a non-risk-taker. I feel your sisterhood deeply in this. We are not mice in a scientific study, we are equal to men, we are educated, we are allowed choices, or at least to ask and inquire for them. I will be following your posts very closely and your courage is way above and beyond many of us. I always said "I'm not a good candidate for advanced breast cancer due to my babyness, my lack of courage." Funny, though, after going through it all, I might have gained a bit of courage through just going through it.

Re: I think I'm in trouble!
 

Norkdo,
You sound So much like myself 16 years ago when our then 7 year old son was diagnosed with Homozygous familial hypercholesterolemia and we were told most likely he would not live to see his 20th birthday. I had no idea how very very weak I was until that moment, when my entire world shattered. I lived the next two years watching him grow through tears, each birthday was devastating knowing that it brought us one step closer to the moment when he would no longer be with us. As I watched him play I would turn away and cry. Some nights I would just sit in his room and listen to him breath....wanting to etch the sound into my mind so I would never forget it. After about two years though, I realized that I was missing the joy of this moment. At THIS moment, he was here. At THIS moment he was laughing. At THIS moment he was saying "I love you." And, I was missing it because I was viewing it through the future....which of course was predicted, but no one truly knows the future.

At that moment I made a choice to live in THIS moment. AND to fight for the future. I took time to sit in the floor and build lego's......and laugh. I stopped cleaning house (after all it was just going to get dirty again right?) I started researching his disorder until I became an expert who knew more about it than most of his doctors. I did research on my own that stood outside of conventional medicine. I went back to school and entered graduate school in Organic/biochemistry and studied "Bile acid sequesterants" (a drug for familial hypercholesterolemia). I learned. I fought. And I laughed with our son.

One thing I learned was to listen to the whispers of God. I know not all of you will understand or believe this, but God IS whispering direction and I strained to listen. And I learned to hear. We went against medical advice and refused to do LDL apheresis with our son because we believed God directed otherwise. It was frightening. We wondered if we were doing the right thing. It took until the age of 17, but at 17 his doctor shook his head and admitted that we had made the right choice.

In the process I learned to live in this moment. I learned to never give up! I learned to research! (which came natural to my personality anyway) I learned to listen to God's prompting. And I learned just how much I had been missing out on even before his diagnosis because I was living by "chance" rather than by "purpose." We began to parent by purpose rather than chance. And it revolutionized our lives. THIS moment is precious regardless of the outcome! We have continued to live with "purpose"

Today I helped my TWENTY THREE year old son fill out job applications. He graduated last month with a degree in Computer Engineering. He has no heart disease (this is what kills people with Homozygous familial hypercholesterolemia), and his LDL cholesterol is normal on a combination of 6 medications and 4 supplements. He is healthy even without the LDL apheresis that had been pushed on us, but which we refused. God had been right as I suppose he always is. ....although I often forget that when I'm in the midst of a "life challenge."

And here I am, leaning in, straining to hear the whispers of God's voice leading me where I should go in this current "life challenge." But regardless of the outcome, I know this......THIS moment is sacred! THIS moment is treasured. THIS moment is full of joy!

Does that make me strong? No. I just means I have come to the place where I fight for the future, but without leaving the present. I have come to the place where I am reluctant to take one step without God's whisper leading me there. I don't think that makes me strong, although it does bring joy to today! And really, none of us knows if we really have tomorrow. I could cross the street to get the mail and be hit and die.

I suppose in the battle of the mind.....I HAVE won. Not that I am successful in every moment. I have my moments like everyone else, I just don't stay there. I am living for the moment, and I am loving every single minute of it!

Living in the moment doesn't mean that I don't consider the future. It is why I study and learn and try. Of course my personality would find it hard to do anything else ;-) So research I will! Clinical trials I will join. And I will laugh! Life is much too short to spend it doing anything else but laughing!

Re: I think I'm in trouble!
 

Ah, the fun continues! I'm scheduled for an MRI next week....at MY request. Finally, got the okay from my oncologist. She had been dragging her feet since she really didn't see the need for DCIS.

What made me chuckle was when I requested it this time, she said it was a "good idea" since it is a good indicator of extent of disease for high grade DCIS. I think she forgot that I was the one that told her this back in February when she insisted that MRI was not good at detecting DCIS and was pointless for that purpose. I had sent her the research showing that it is 84% accurate in determining extent of disease in HIGH grade DCIS. Funny....she remembered the research I sent her, but not who sent it!

Regardless, I was granted my request. Flying out tomorrow!

Re: I think I'm in trouble!
 

Fingers crossed, keep us posted!

Carol Ann

Re: I think I'm in trouble!
 

The plot thickens! This is going to get VERY interesting very fast I suspect!

That MRI that "I" requested and demanded? WELL.....how about five more biopsies scheduled for me this week? Yes, that is correct, five more biopsies as a result of that unnecessary MRI. Two are in the OTHER breast! Of those two one is suspected to be just a papilloma. But the other? Only the biopsy will tell. It's just a little bugger 6 mm by 4 mm, but if that happens to be invasive cancer we will have discovered because I DEMANDED an MRI!

And the other THREE biopsies? Those would be in the breast with known DCIS. One, is the original DCIS site which because I declined a clip at the time of the biopsy they now want to biopsy again...that is fine with me. The second in that breast is probably the pappiloma that was biopsied in March...but I declined a clip with that one as well, so they want to make sure it really IS the pappiloma. And now for the grand finale! The fifth biopsy? That would be in a mass that is "highly suggested of malignancy." AND NOT near the DCIS. Do you realize that if they had done the lumpectomy that was recommended before, THIS mass would have been missed? It does NOT show up on mammogram and didn't show up on the ultrasound either. If surgery had been performed earlier THIS mass would have been left behind!

I feel SO grateful that I demanded an MRI! Of course we could all be surprised and they could come back as benign, but really.....with my history? I doubt it!

I flew back yesterday with my father who had the ablation and needed me to fly with him to carry all his things...and tomorrow I will fly back to Mayo for all these biopsies! How fun.......??? This frequent flier is very tired of that designation!

Re: I think I'm in trouble!
 

Oh I am sorry yet glad all at once ... sorry this is getting so much more complicated, but glad you insisted on the MRI and now they are finding what they need to find.

See my signature ... NONE of my diagnostics, including an MRI, ever found ANYTHING. if it hadn't been for the Paget's disease I had, with a bloody nipple, and an insistent surgeon, AND the double mastectomy I insisted on against all the pushback against it, my life would not be the same right now.

Keep us posted, and keeping fingers crossed for you!!

Carol Ann

Re: I think I'm in trouble!
 

I'm sorry, too! Were they able to compare the MRI images with previous mammograms to see if there was a "hint" of your other suspicious spots? And yes, I know that MRI's and mammograms "look" different.

I can't remember if your first biopsy had a KI67 result or not.

I know this sucks big time. Please keep us posted

Best
Janis

Re: I think I'm in trouble!
 

KayJay, yes, I had a KI-67 done (at my insistance) back in November and it was either 20 or 30%. KI-67 is usually NOT done for DCIS so it had to insist on it, to have it processed and determined. THe same went for the HER2 testing. It is not usually done for DCIS so I insisted on that as well. I don't remember off hand whattheKI-67 was but I do know it was either 20% or 30%....and whichever it was it was right on the cut off between the two degrees of KI-67. . I would have to go look it up, and I'm in Rochester at the moment not at home where all my records are! Tomorrow is my "lucky" day of biopsies....all five of them. I'm going to be a regular pincushion!

Re: I think I'm in trouble!
 

As far as I know there was no hint on the mammograms OR the ultrasounds that I have had. Of course the contralateral breast never had more than the initial mammogram, but the ipsilateral breast has had a TON of mammograms and multiple ultrasounds, none of which seemed to indicate any other "areas of concern." Nope, this is the first hint of anything further amiss! Okay, so it is more than a hint!

Re: I think I'm in trouble!
 

Darn it! Wouldn't you know that Mayo only schedules their MRI guided biopsies on Tuesdays? And by the time I had my "second look" ultrasound and the results of that were back, it was too late to schedule for today!

That means I will be flying home tomorrow only to return next Monday for Tuesday biopsies. ....this frequent flier thing is getting out of control!

Now for the "curious" part of today. That "second look" ultrasound took THREE hours to complete as TWO radiologists and my oncologist discussed each image and throughout the three hours they kept demanding MORE images. The technician and I were dumbfounded as more and more images were requested spanning THREE entire hours! The technician kept apologizing for the delay! ..and I kept assuring her it wasn't her fault!

The results of the ultrasound were as follows:
1. The enlarged lymph node was no longer enlarged (I was catching a cold when the MRI was done and that was most likely the cause of the enlarged lymph node) (good news)

2. Two of the "indeterminate" areas are ONLY visible by MRI and not by ultrasound or mammography so these will require MRI guided biopsies which will be performed next Tuesday. One is thought to be the DCIS that used to be visualized by mammography and was biopsied back in October and found to be DCIS. The other is thought to be greater extent of DCIS than previously thought, although only biopsy will tell. All told this length of DCIS is about 6 cm which is quite extensive considering the mammography thought it was 2.7 cm in October....but some couldn't be seen by mammography? (indeterminate at this time)

3. The 2.2 cm mass was the remains of the hematoma and it was previously biopsied in February and was confirmed to be remains of the hematoma. (good news here)

4. The contralateral breast has two masses that do show up on ultrasound and these will undergo ultrasound guided biopsies on Tuesday. (indeterminate at this time)

5. The "little" 4 x 5 mm mass was biopsied in February and found to be a papilloma. (good news here)

6. There is a little 5 mm mass that onlyl shows up by MRI and will need to be biopsied by an MRI guided biopsy. Add this to the list of biopsies for next Tuesday! (indeterminate at this time)

So, in all, it was a good news day with some indeterminate masses yet to be biopsied. Could have been worse..........

Re: I think I'm in trouble!
 

Sorry you have to fly back again, ugh that is so hard! But glad there is some good news, too!

Carol Ann

Re: I think I'm in trouble!
 

I had my 20 year old daughter with me this trip! It was actually a very special time with her! We called it our Mother/Daughter bonding trip. I wouldn't have traded it for the world!

Re: I think I'm in trouble!
 

Great!!

Carol Ann

Re: I think I'm in trouble!
 

What a journey! Any results yet? It's all very intriguing.

Re: I think I'm in trouble!
 

Thanks for asking! I am sitting in the hotel lobby waiting a few hours for my shuttle to take me to the airport and back home!

I was scheduled for THREE MRI guided biopsies for yesterday. I ended up having two because the third lesion disappeared and was no longer visible. We had thought that the posterior lesion was the one visualized by mammography and biopsied back in October. This has proved NOT to be the case. It is an entirely new lesion. There is no news yet on either biopsy pathology. The pathology report should be back by Friday...or so I am told.

What this means is that I have the original biopsy proven area of DCIS, AND these two new lesions that may or may not be more DCIS. They LOOK like DCIS on MRI but are not visible by mammography or ultrasound...which is common with high grade DCIS.

What is strange is that the original lesion is NOT visible on MRI. 98% of high grade DCIS IS visible with MRI and in fact MRI is highly effective at determining extent of disease for high grade DCIS. So, either this original lesion (which was biopsy proven high grade) is part of that 2% that cannot be seen with MRI or the morphology of the lesion has changed...which also happens. Although usually they don't change from high grade to low grade so this is a bit of a puzzle.

Today I had two ultrasound guided biopsies scheduled for the OTHER breast! I ultimately had one biopsy. The first site was injected with lidocaine and the lesion disappeared! The doctor said that when a lesion disappears with the addition of lidocaine he is no longer worried about the lesion because that usually means it is benign. The second lesion was biopsied and the results will be available probably on Monday. He said the ultrasound was indicative of a fibroadema but that until biopsy results came back we wouldn't know for sure.

So, all in all three biopsies rather than five. And of the three, two look like greater extent of DCIS while the third is most likely benign.

Yup, I'm sitting here with TWO VERY sore breasts! (I'm not complaining, just an observation!)

I am flying out tonight and I'm not supposed to lift more than 10 pounds for 24 hours.....yeah right. NOT going to happen! I have a suitcase which definitely weighs more than 10 pounds! I'll try to be careful but I have to have my suitcase with me! (actually a VERY full duffle bag)

I also received word that I start the clinical trial on July 11th! Woo-Hoo! This has been SO long in coming. VERY ready to start this new adventure!

Re: I think I'm in trouble!
 

So glad things are moving forward and you have had some good news!

Carol Ann

Re: I think I'm in trouble!
 

Updated path report:

What I had been told before was incorrect. One of the two "new" lesions in the left breast, IS the old biopsy site from October. I had been told it was not, and that I now had three lesions in the left breast. However the pathologist said it IS in fact, the old biopsy site because he could see biopsy site changes in the samples. So, it is not surprising that this site does indeed show high grade DCIS.

The second lesion that looked like DCIS, is indeed DCIS. Now it is thought that the first lesion and this second lesion are most likely just additional length of disease....all in all about 6 cm. which in my opinion is a lot! This too, is high grade DCIS.

So, instead of three lesions in the left breast, there are only the two, one of which showed up as calcification in October (and was biopsied at that time. This first lesion also showed up on the MRI. The second lesion only showed up on the MRI and not by mammography or ultrasound.

This is the first MRI I have ever had so there is no way to know if this second, MRI visible only lesion, has shrunk, grown, or stayed the same since October.

Interestingly enough, the first lesion has shrunk by half from October to now. In fact, this is why they had thought this was an entirely new lesion! They simply could not believe that it might have shrunk, therefore it HAD to be new disease. My oncologist did not have an explanation and said she has never seen any shrink. In fact, she began to wonder if it was just differences in imaging between October and now. However, she is known for being manipulative in the way she says things, so I do think it has shrunk...and indeed the pathology report says it has.

The lesion from the right breast turned out benign as expected.

I Guess all of this really is good news. And, while I am usually an upbeat, thankful person, today was a hard day. I think I spent too much time thinking of what is to come.....

On a positive note, I fly to Texas on July 10 to begin the immunotherapy trial on July 11th.

Re: I think I'm in trouble!
 

It was a hard day, I am sure, none of this is easy!

But it sounds like you are on the right track and there IS good news as you move forward!

Keep us posted!

Carol Ann

Re: I think I'm in trouble!
 

Ah, the biopsy that keeps on giving..... ;-)
Friday I had the surprise of my life! 10 days post MRI guided biopsy I was examining my poor breast in the mirror trying to determine just how large the lump from the biopsy really was....I ALWAYS have inflammation and lots of it from the biopsies. I was looking the current lump over and softly pushing on my breast when my breast EXPLODED! Really! I was stunned and didn't realize exactly what had happened at first. There was blood and blood clots all over the mirror, all over the counter, all over the faucet, all over everything! I just stood there stunned for a moment until I realized that all the blood was old blood and most likely from an undiagnosed hematoma that had just ruptured through my skin. I guess that biopsy created ANOTHER hematoma....shesh.

Since I am known for creating hematoma's they had kept me for over an hour after the biopsy checking on my breast and rechecking. There didn't seem to be any sign of a hematoma growing so I was sent home to the hotel. And for the first week afterwards, there didn't appear to be any lumps forming. But the last three days, there had been that lump.

This was the FIRST time I had allowed a clip to be placed. I have declined ALL the other 6 biopsy times. But I gave in this time. Keep in mind that my body ALWAYS reacts to foreign bodies.....even stitches cause a huge problem. So, I had refused a biopsy clip for six biopsies but gave in on the 7th. And I think my body just rejected that clip! With all the blood and blood clots all over the bathroom, I let me oncologist know what had happened. She wanted to do a mammogram to see if the clip was still there....I wouldn't let her. There is nothing we can do about it if it is or isn't there and it doesn't change anything so why expose my breast to MORE radiation? I tell you, you have to be your own advocate!

Anyway, there is nothing like the surprise of having your breast explode all over the mirror, sink, counter, clothes, everything....especially when you aren't expecting it!

You know? I think next time, I will decline the clip....... ;-)

Re: I think I'm in trouble!
 

YIKES!!! I am so sorry this happened to you!

Hopefully there will be no more biopsies and hence clips to decline!

YES, I couldn't agree more with being having to be your own advocate.

See my signature ... I got all kinds of pushback when I said I wanted a double mastectomy ... no need to remove a healthy breast, look at all these stats, no increased chance of survival, yada yada yada ...

And then my HER2+++ tumor was found in the "healthy" breast ... that even the MRI missed and said was "healthy".

No more pushback, gee funny how everyone shut up after that!

Let's hear it for No More Surprises!

Carol Ann