Chances of a pet scan tomorrow and nervous
hi, i was diagnosed initially with DCIS and that changed to IDC and they also took a bit from my lymph node which came back positive but the nurse said a very “small” amount. Doesn’t matter the amount to me what matters is I am sacred of it spreading. So I have a follow up with my surgeon tomorrow and I’m sure he got the results this past Friday of a somewhat positive lyohm node and wondering if it’s protocol they do a pet scan and also Is there anyway to prepare for it because i read something about you can’t have carbohydrates and such 24 hours before?
Comments
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i doubt they will do a PET scan. Seems that's only ordered in advanced stage cases and possible METs. I could be wrong though. Ive asked my MOs for a PET scan due to my complicated chronic health history and my constant pain in my bones, fevers, etc my basic disabling symptoms i have lived with and was told no.
Have you had a Breast MRI done yet? I can't remember. That seems more likely if you haven't had one. Or possibly a Bone Scan.
I think in the chance they do order a PET tigers nothing I'm aware of that you needed to do to prep.
Good luck tomorrow.
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yes they did a breast MRI. I was just wondering about the pet because I have a bit of IdC in one axillary lymph ode that I know of. Just fearful of it Spending but the dr asked me 2 weeks ago (my first visit) if I had any shortness of breath, bone aches or headache and I don't have any of those. I guess that's a good sign but I'm not an optimistic. Thank you
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No, definitely not protocol to send someone for an immediate PET scan just because there is some cancer in a node. I wouldn't say that the chance of that happening tomorrow is zero, but it's pretty close to zero.
Having a positive lymph node is concerning, of course, but that in and of itself does not mean that you have an advanced breast cancer. So it doesn't automatically kick in testing such as bone scans and PET scans, which are usually done for more advanced diagnoses.
The question will be what the surgeon says now about the possibility of IBC and what he recommends for surgery. The other question, given the confusion about your diagnosis and the original concern about IBC, is whether you should see a Medical Oncologist before you make any decisions. In most early stage cases it's fine to see the MO after surgery, but the MOs role is to look at the whole picture and recommend the entire treatment protocol, whereas the surgeon deals only with surgery. If the surgeon believes that there remains any possibility of IBC, which to my understanding would usually mean chemo before surgery, then you should be seeing an MO.
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yes correct and the surgeon has never said I had it or didn’t have it do I dunno what’s going on with the IBC. I do know my breast has not changed in 6 weeks. And yes chemo before surgery I did read is always protocol for IBC. I don’t think they want to go cutting into cancerous skin like that. But isn’t stage 3 advanced. The surgeon told me IBC is always stage 3 or 4. So maybe tomorrow given that they finally found something invasive IDC means I’ll probavly see the MO not tomorrow but will be scheduled to see the MO and I hope very soon. All this waiting is making me anxious with what’s going on in my body.
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IBC is always at least Stage IIIB. However at this point, you have not been diagnosed with IBC.
From your two biopsies, you have DCIS (biopsy #1), and IDC with nodal involvement (biopsy #2). The biopsies and imaging seem to suggest a larger amount of DCIS (which is a non-invasive condition) than IDC, and so far, the nodal involvement appears to be small. All that is subject to change once you have the surgical pathology, of course, but for now it's possible that your diagnosis might be Stage IB or IIA - early stage
With no change in your breast in 6 weeks, the likelihood of IBC is getting smaller but it will be interesting to see what the BS says tomorrow.
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yes it will be interesting. I will report here tomorrow and let you know what he says. Thank you beesie you’re so helpful
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so you were correct! No pet-scan today and now they are STILL trying to find something invasive! So far they have done 1 core biopsy of ten pieces of tissue ALL proven to be high grade solid DCIS. 2nd vacuum biopsy (all done by the radiologist) for the vacuum biopsy I had another piece of breast tissue and a piece of lymph node biopsy and it came back as follows (surgeon gave me the path report)
FINAL DIAGNOSIS
#1 right breast site #1 at 3:00, core biopsy
-high grade solid ductal carcinoma with lobular cancerization.
-tumor cells negative for ER(0%) and PR(0%)
#2 right breast Axilla site #2, core biopsy:
-minute focus of ductal carcinoma with high grade nuclear features
Comments:
#1 A minute tumor nest with lymphoid aggregates demonstrates absence of myoepithelial cells, suspicious for invasion
#2 the tumor is too minute to perform complete hormone studies. Hormone studies should be performed on excisional specimen.
MICROSCOPIC DECRIPTION
#1 p63 and smooth muscle myosin heavy chain highlight myoepithelial cells.
#2 core biopsy consists of predominantly of fibroadipose tissue with a minute focus of tumor cells with high- nuclear features associated with lymphocytic infiltration highlighted by pankeratin immunostaining . Lymph node architecture is not seen.
So I have to go in now for an excisional biopsy to remove a bigger chunk to be tested. He looked st my breast today and is not really seeing a difference and I asked if he thinks it could be locally advanced breast cancer and he said it may be and I asked if he thought it was just DCIS he said it may be and that they need to find something invasive cuz they don’t want to treat me with chemo unless I need to be and they don’t want to undertreat me either. So he’s suppsed fo call me later as everyone in their team meet and is going to schedule me to come in for an excisional biopsy. Ughhhh.....so I’m thinking not inflammatory or inflammatory breast cnacer
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It appears from my reading of the pathology report that the term "ductal carcinoma" has been used rather than a more clear/precise "ductal carcinoma in situ" or "invasive (or infiltrating) ductal carcinoma" because the samples were too small to definitively identify as being invasive. That said, the breast biopsy sample appears to be invasive - the absence of myoepithelial cells is specifically what the Pathologist looks for to distinguish IDC cells from DCIS cells, which is why the report says "suspicious for invasion".
As for the cancer cells in the node, since DCIS doesn't travel to the node, either those are DCIS cells that were misplaced into the node by the biopsy needle - did the Radiologist switch to a new needle for the node biopsy, or at least do the node biopsy first, before the breast biopsy? - or they are invasive cancer cells. DCIS cells would not get into the node any way other than accidentally from a surgical instrument so if the surgical instrument was clean and used exclusively for the node biopsy, then those cancer cells must be invasive.
The good news is that it does seems like the possibility of IBC is now off the table. While I think the odds are probably high that you do have some invasive cancer, if the amount found so far in two biopsies is so little that it can't be clearly identified, then hopefully when the final surgical pathology is in, the amount of invasive cancer found will be very tiny. Even if there are cancer cells in the nodes, as I mentioned in an earlier post, if it's ITC (isolated tumor cells, 0.2mm or smaller), it still counts as node negative, and if it's micromets, it's still Stage IB. So to my reading, it's looking more hopeful that this is a very early stage diagnosis, probably most composed of DCIS. Let's hope
You sure are being put through the wringer with this diagnostic process!
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yes I am being put through the ringer. All my blood work came back today great and I also had genetic testing done. I guess the blood work thing is a good thing? Cuz if cancer was traveling in my body to other places like my liver and stuff it would probably throw stuff off correct?and tonight when the surgeon called me to discuss me coming in for a time to put a clip in my breast on Thursday so he can do surgery Friday to be able to find it better he did say for the first time we do think it’s IBC. Because of thickening of the breast ad still slight pinkish over 1/3 of the breast. I was really bummed and scared to hear that
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Missmom, I just wanted to say I'm sorry you find yourself in this situation. I gotta ask though - did they do skin biopsy? I believe this is how they DX IBC - looking for breast cancer cells in the skin. Also, did MRI give any additional info about skin involvement? The reason I'm asking is because my tumor was very close to the skin, but my MRI report specifically said they didn't suspect skin involvement based on the imaging.
It looks like they can barely find enough invasive cells to do hormone receptor testing (in your node, at least), and at the same time say it may be IBC. I would have so many questions about this! I don't think they diagnose IBC based on clinical symptoms (skin thickening/redness, it has to be pathology). Are you being treated at NCI center? Does your surgeon specialize in breast cancer? IBC is relatively rare, and even those BS who specialize in breast cancer may not see a lot of cases. Please consider a second opinion at NCI center or with a BS/Oncologist who specializes in breast cancer.
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- ? They did not do a skin punch biopsy as I asked for one. He said that they would do a second biopsy to find something more invasive that would put the last puzzle piece together with me having IBC(I guess if I do) firstly he said I have diffuse skin thickening and showed me the unaffected breast and how it was much different than the affected breast. And then he did a physical examination of my affected breast and an examination of my axillary nodes and claviacle. So he said with that and then finding something invasive (which I thought being in my lyphm node was enough) once that last piece of the puzzle is in and it’s defiantly invasive then he said it’s IBC. I guess you need a clinical and pathological diagnosis right? So now the plAn is a excisonal biopsy now and i believe a SNB anD that would include some of mY skin. I am really interested to see what this shows. Oh yes and they did an Breast MRI which showed the skin thickening also and a 1c spot which they biopsie to be DCIS again. I am being treated of an affiliate by the Mayo Clinic in sayre PA. Yes I believe he does specialize in breast cancer. I see an oncologist on the 13 tat my primary dr set me up with
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Ok, makes sense. Good luck tomorrow and Friday. Hope you get all the answers.
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fawaway
My petscan was clear. So relived. I still need to go for second opinion. Onco I seen today says after examining me I do have IBC. He said that the symtoms CAN come and go. I dunno.
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Glad the PET is clear! Do you have an appointment setup at MD Anderson?
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not yet. I really liked the oncologist. I was very impressed with him. He knew all the protocol on how to treat IBC. I’m still thinking about it and we can get back to you! Thank you so much ...yes so happy pet was clear
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