Doctor says BC, Breast is Negative, but the lymph is infected...
Comments
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Well, she had the MRI assisted Biopsy. She called it "Fracking my Breast".
Most of you will understand... I am so sorry any of you had to go thru with that. And there is so much more to come for her.
But she was trooper. She has to be.
We will be spending the next couple of days/week trying to understand what some of the treatment options may be. Since we have one bad node, we have to deal with that. I would like to have her avoid getting a bunch pulled out to reduce the lymphedema, but we have to get thier recommendations.
Since we do not have a *true* diagnosis, nor her ER/PR/HER status, so many things are up in the air. Just trying to get prepared.
We had a musical to go to after the fracking. A friend came over and starting talking to my wife. We did not know that she had stage 1 BC and entered treatment last November. She looked great. And talked about how great the Dr's/nurses/staff in the practice that is going to help my wife are.
But.
My wife was real uncomfortable. She does NOT like to be the center of attention, and everything about this BC is putting her right in the middle of the center of attention. This friend, wanted to help, to reach out, to provide assistance. Which is really nice. But it makes my wife so uncomfortable. "No conversation can be the same" The elephant is in the room...
What do you think of this? What can I do/what can I try/ to reduce this? I can run interference, if I know something is coming, but I didn't know this was about to happen.... And it was hard to try to deflect, she was trying to extend a hand to help her across this rubicon, hardly a reason to try and push that hand away..
And it has nothing to do with this other woman, it has to do with my wife, and her comfort level. We can't hide, we don't want to hide, we just do not want it to be *the* topic all the time. Any thoughts?
Rich
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Hi Rich. I'm glad your wife had the MRI. I hope you get some answers soon so you can get on with a treatment plan.
As for your wife speaking to others about it, or not wanting to, I completely understand. I don't want to be the center of attention either. I'm not sure if you were in a public place or not (mentioned you were at a musical), but I would be very uncomfortable discussing my diagnosis in a public place like that.
By way of context, I'm 3 months out from diagnosis, I've had surgery and am still in the process of figuring out next steps (waiting for oncotype and review of pathology due to some complicating factors.). This is a very personal journey, and I've been careful about telling people. And I actually think I was in shock for a good period of time. I know for some people, they want to tell everyone all at once, and gain a lot of support from others. That's not me, and sounds like it is not your wife. I'm an introvert. I have a few really good friends that I discuss everything with, along with my Mom. I'm single and don't have children, so there is not a spouse or kids in that inner circle. I find it hard to talk to my Dad or brother about this, so they get their updates from my Mom. My other friends and colleagues at work get high level updates. Some of my work colleagues don't know anything and none of my clients know (I want to know what's next first).
I think your wife will find her support. First she has you, who are very involved in her care, so that is wonderful for her. Perhaps once she has a clear diagnosis and knows what her treatment plan will involve, she will be at a point where she wants to engage with others on the issue. At this point you have so many unknowns, that it might be hard for her not to go to the worst case scenario. Would she be willing to partipate in these forums? What about a peer counsellor - I know some support orgs will match you with a survivor who has a similar diagnosis.
Good luck with your results.
Ridley -
I've found it is childishly simple to get other people to talk about themselves. Perhaps you could jump in and ask about her treatment or what relatives they have that have had cancer or really anything that allows the person to talk about themselves.
I got by with an airy, "it's not as much fun as the pink people would have you think! How are your kids?"
I, too, despise being the center of attention which is why saving my hair was such a huge deal for me. I think people are very sensitive on this point -- at least for the most part -- but the fact is they know.
I look back at pictures of me during chemo and I thought I looked totally normal. In fact, I looked sick and tired with a strangely receding hairline (we didn't get the edges quite right.) But because I thought I looked "normal" I did my normal stuff, including exercising almost every day, the importance of which cannot -- cannot -- be overstated.
If she can get a canned response like mine down and change the subject, most folks will get the hint and not press it.
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I will call my wife Flamingo. Its easier that way... She likes pink, but not this way....
Ridley, thank you for your post, that is sort of what I am looking for. In some ways, the lack of a DX has slowed down the process of telling folks, becasue then you can't say what happens next. Because we don't know.
I have read some of the humor threads, that is interesting, and I will search for some other stuff.
Lady: It is ALWAYS easier to get others to talk about themselves, Flamingo is quite good at it. But they circle back too quickly. I am sure the novelty will wear off, and some of the convo's will diminish because of that. And the attention span of most folks is pretty short.
In the case in question, the other woman with BC was talking about herself. So, kinda hard to stop her. And Flamingo really did not say much at all. Really didn't get a chance to get a word in edgewise. The woman is an aquaintance, a friend of a friend, who told her about Flamingo's DX. We had met her at social gatherings at the mutual friends house. She is a good woman. It came from the heart.
Flamingo is interested in joining one of the local support groups. She looked into the local one, but since we are changing Dr's, she is going to look into some of the new hospital's groups.
I asked her if she shouldn't start her own? After discovering 5-6 women you know who have this, why not invite them all over and just hash it all out? Flamingo, even though she claims to be an introvert, loves to entertain. So, we will see.
Thank you for the support.
Rich
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The new Surgeons office called and noted that they expect it to be BC, and have tenatively scheduled Oct 16th for the surgery.
Should we have a consult with the oncologist first? Take the pathology reports to the ONC and then make decisions?
Rich
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Yes, the oncologist may recommend neoadjuvent treatment to check response before surgery. It's worth knowing that.
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RichCPAman - it is probably an even split between those who see BS (and PS if doing recon), then see the MO afterward, and those who like to have a MO consult prior to surgery. Since it sounds like you are looking at surgery first, and are in an unusual situation of needing more definitive info on hormonal receptors and Her2 status than you currently have, it might not be worth the time to see a MO before surgery, they would be grasping at straws in terms of treatment plans if they don't have that info. Systemic treatment is driven by staging, and the ER/PR/Her2 info, so not sure what they would be able to tell you, and laying out every possible treatment will do nothing but overwhelm you.
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Well, she recieved the firm news today. The MRI Assisted Biopsy found its mark.
DCIS, about 1.3CM according to the graphs.
Still awaiting the ER/PR/HER Status. That will be a couple of days.
To the hospital tommorrow for an informational meeting.
Guess I will have to change the title of this thread...
Rich
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Hmmm -- glad the MRI found the source, but its confusing to me that its DCIS, as that's not invasive cancer and yet they found evidence of breast cancer in her lymph node?
Hopefully the docs will have some clarifying info at your next appointment.
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I agree with Ridley. The dots are not connecting here. Your wife had invasion into her nodes, so that means that she has invasive cancer. DCIS is a pre-invasive cancer that is fully confined to the milk ducts and cannot travel to the nodes. So if DCIS is all that the MRI-guided biopsy found, then the sample retrieved by the biopsy needle was not representative of the entire tumor. There has to be invasive cancer as part of that cancerous mass (DCIS and IDC are often found together) because otherwise your wife could not have nodal involvement. By definition if it's DCIS, it cannot travel to the nodes. And by definition, if cancer is in the nodes, the patient has invasive cancer.
I know I'm sounding like a broken record here, but I never understood why another needle biopsy was being done. An excisional (surgical) biopsy would have removed the entire mass and it seems pretty clear that both the DCIS and invasive cancer would have been found. And yes, they can do the ER/PR/HER testing on the biopsy results, but hormone status sometimes (not often but it happens) changes as cancer evolves from DCIS to become IDC. So ER/PR/HER testing normally is done on the invasive portion of the tumor (when both invasive cancer and DCIS is present), which means that it in your wife's case, it should be done again, after the final surgery, once the invasive cancer is found. Unfortunately it seems that this needle biopsy didn't get you much further ahead.
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Beesie is absolutely correct. (Of course).
The way it was described to me, I had a 6 cm sheet of cancerous cells. The area that was biopsied was DCIS, ER/PR+.
When the breast tissue was examined after mastectomy, IDC was identified which was ER/PR-, as well as ER/PR+.
Lucky me -- I get to do ALL the treatments.
The critical point is that the ER/PR- cancer was HER2+. There is no way anyone who hasn't been through this drill could appreciate the significance of that -- just one more undefined term thrown around by a bunch of well meaning people.
So, like Beesie, I wonder what the point of the needle biopsy was -- that's a lot to go through -- and am actually shocked that they would call you with a diagnosis of DCIS because about the only thing we know for sure about her tumor is that it is NOT DCIS.
She has malignant cells in her lymph node. Therefore, by definition, it is not DCIS because it is no longer "in situ."
I'm sure the bit of the tumor that they biopsied was DCIS just like I am sure the bit of my malignant sheet they biopsied was DCIS.
Absent a situation where neo-adjuvant (pre-surgery) chemo is in order, the only pathology report that matters from a treatment standpoint is the post surgical report.
Given the history here, I would start pressing REALLY hard for surgery. Diagnostically, you are at the end of the road.
And I would have whatever pathology report you get reviewed by an out of network/hospital doctor.
If a medical professional is telling you that she has DCIS with a positive node, fire them immediately and move on to the next medical team.
Doubtless it is the paranoid lawyer in me, but I feel like y'all are getting the runaround. My sense is that no one is invested in your case -- that in moving medical centers there is no sense of accountability.
The same pathologist who assured me in January that there was nothing to worry about and assured me when I graduated to a different level of mammogram in September that there was nothing to worry about was the same pathologist who somewhat frantically did the sonogram then scheduled the biopsy immediately. I think she felt a degree of responsibility and that got communicated up the food chain at Baylor.
I don't think she did one thing wrong but I was willing to ride that wave. I'm sure that knowing I was a trial lawyer, a factoid I managed to drop in a benign way in almost every medical context, didn't hurt.
My sense is that you don't have a wave yet.
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TheLadyGrey, you are absolutely right that they should never have called to say that the diagnosis is DCIS. Instead, they should have said that the biopsy was inconclusive or incomplete. Or they should have said nothing and explained this during the meeting today.
Heading into the MRI-guided biopsy, there were three things that the doctors knew with 100% certainty:
1. There is nodal involvement. The first biopsy found that.
2. There is breast cancer. It hadn't been found yet in the breast but it had to be there, otherwise there couldn't have been nodal involvement. No "ifs, ands or buts" about it. However it seems from what RichCPAman has been saying that the doctors have been reluctant to come out and say this definitively. I haven't understood why this is. This has been a certainty since the first biopsy result. As you said, "I feel like y'all are getting the runaround"
3. The breast cancer is NOT DCIS but is invasive cancer of some sort. Again, it's the nodal involvement that makes this an absolute certainty.
Considering that this second needle biopsy seems to have provided no new/additional information, I am curious about how the results will be spun by the doctor. It will be interesting to hear RichCPAman's update after today's meetings at the hospital. Hopefully the information he got yesterday was incomplete and in fact some invasive cancer was found in the biopsy. Then the ER/PR/HER testing will have meaning and some treatment decisions can start to be made. Since it's almost a month since RichCPAman's wife got the results of the first biopsy, it's time to start making decisions and stop wondering about things that really were known all along.
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TLG - it is funny that you dropped the trial lawyer info to your benefit, I just wore my scrubs to all appointments and found that I got way more info and access that way! I have considered wearing them to appointments with new doctors (for new issues, lol!) even though I am no longer working!
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Well.. I didn't post all the information.
I went on a search after posting the above. I word-searched every term on that report on BC.ORG that was not in capitals or less than three letters.
Like TheLadyGrey, Flamingo has two types. She has IDC and DCIS. I haven't seen any pictures, to see how they look different on the MRI/Ultrasound/sonogram, but the actual report was pretty specific.
The Nodes were examined and detailed before, so nothing to add for that. (well, I probably *could* but we will wait for later.) They were just trying to nail down the actual lump in the breast. Becasue the first needle biopsy missed it.
She has a pre-ops appointment scheduled with the surgeon on Oct 8th, and the surgery is scheduled for the 16th.
She is leaning heavily in the direction of the lumpectomy, and then seeing what happens next.
We are moving along finally.
Still awaiting the ER/PR/HER2 status. Guess that takes a week. Welcome to rural doctorin'...
I do not have the detail of the E/P/H status of the Node, so we will see what the differences are if any, after we get the status from the breast. Should be interesting to compare becasue they came from two different removal techniques and ran thru two different lab processes. If there *IS* a difference, then that will be interesting.
So, I think we are going in the right direction now...
Rich
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Rich -- glad to hear you have more pieces to the puzzle sorted out
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IDC and DCIS. Well, that makes quite the difference. And it makes a whole lot more sense.
As for how the IDC and DCIS look different - that's the pathologist's job. IDC and DCIS look different under a microscope but often not on a screening or diagnostic image.
When a lesion includes both IDC and DCIS, the diagnosis is considered to be IDC. And when IDC and DCIS are found together, the DCIS is pretty much irrelevant. It needs to be removed, so it does matter when it come to the size of the lesion (for removal purposes however not for staging; the amount and size of the DCIS is not factored into the staging) and the surgical margins, but beyond that, it's not worth thinking about. The IDC is the more serious condition, so the staging and treatment are based on the IDC. The DCIS in effect goes along for the ride and whatever is done for the IDC should be more than adequate for the DCIS.
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