View Full Version : Need Your Advice and Guidance
My best friend was just diagnosed with breast cancer and could use your help. Her 2 Nov mammogram came back with "suspicious micro calcification's in the area of a milk duct, she was sent to a surgeon who removed the suspicious area (marked by a pre-inserted wire) on 17 Dec. The path report came back with "several areas of hemorrhages, multiple foci of well-differentiated infiltrating ductal carcinoma, Grade I, extensive ductal carcinoma in-situ (DCIS), high nuclear grade, solid comedo type and micropapillary type. Tumor stage T1, N0 Mx". She shows ER+, PR+ & HER2 (3-4+). The surgeon now wants to go back in this Friday and take more tissue out of the same area and also 1 or 2 lymph nodes to see if it spread outside the breast. She asked for a breast MRI to determine if it was in another area of that breast prior to surgery, he agreed. These are a few of the concerns she has at the moment:
-- Since the cancer has already spread outside the duct area of the breast would it be wise to have a complete body PET/CT scan prior to
surgery.
-- Should she go to an Oncologist prior to having more surgery to
determine if perhaps chemo should be given prior to surgery since she didn't receive "clean margins" from first surgery.
-- Since the breast MRI is going to be one of the tools used to
determine if the breast should be removed and MRI's are known for some "false positives", how do you know what to rule out.
I realize the standard treatment when a lump is discovered is you do a
biopsy, lumpectomy then radiation but when you can't "see or feel" the cancer then it just seems that the standard treatment is not the one to follow. Any advice, suggestions or other questions that need to be
answered prior to another surgery would be most appreciated as she's in a little bit of a panic mode right now for she feels if she'd asked for the breast MRI before the first surgery she wouldn't have to have another surgery and she doesn't want to make another mistake that will affect her life.
God Bless and cyber hugs to all.
Lin (Pensacola, FL)
AlaskaAngel
12-30-2007, 06:42 PM
I'm wishing somebody else who is smarter than I am would take a shot at your questions... but I think the reason no one else has may be because we all sort of wish we could all have PET/CT's everytime there is any question of spread cancer, and yet that isn't "standard of care". There also are limits as to how much exposure to radiation we should get over time.
If she has multiple foci of IDC, perhaps MRI followed by a bone scan if indicated would seem like the common path.
Is she high-risk for other reasons? What is the family history, her age, etc.?
AlaskaAngel
Some questions:
on your friend's biopsy report:
1)is it the DCIS that is ER+PR+ and her2+ or the area of infiltrating ductal carciinoma or both?
2)Also. did they give a size for the multiple foci? Were they areas of microinvasion or were they macroinvasion.
How large a tumor specimen(s) did they remove? You make it sound like they used "a wire" and removed"an area" The reason I ask is that multicentric breast cancer is described as being treated differently than "a tumor" or DCIS with one or several areas of microinvasion.
3)Did you friend get a Ki67 number? It gives information on how fast the tumor is growing (which implies how aggressive it is)--with the description of well differentiated and stage I, there may not have even been any Ki67 staining to be seen !!! (a great sign)
Some comments/information:
With respect to the MRI--studies show it can change the recommendation of what surgery should be done and /or how the surgery is done in 20-30% of cases or more.You can't know know the implications of what it might find until the MRI is done and the results known.
Pre-operative chemotherapy , called Neoadjuvant chemotherapy, is usually given for Stage T2 and above, as smaller than that makes it hard to determine if the preop therapy worked or not (the advantage with a bigger tumor with neoadjuvant treatment is, if it didn't, they can know that right away and go right ahead and try another)
Yes, PET/CT also can show false positives--but may take a while to schedule as I understand it there usually is quite a wait to get them at most institutions and recently there has been a shortage of the radioactive tracers needed to do them (Canadian nuclear plant that makes them shut down). From my understanding a PET/CT can still be interpreted if done post operatively. I guess the operative question is whether finding positive results before the surgery would change the proposed upcoming surgery--a good question to ask, it seems.
Unfortunately, PET/CT results are not yet accurate enough to allow her surgery to avoid sampling her lymph nodes (something they might not do if she had only low grade (vs the high grade she has) DCIS without the invasion.
You might want to contact Jean on this board.
I wouldn't be surprised if she suggested your friend ask for an OncoDx test. Jean had a very small tumor but her OncoDx test showed high risk of recurrence so she consulted with Dr. Slamon (who"invented" herceptin) and was treated with chemo and herceptin and now antihormonals
for what, at the time she developed it. official "guidelines" would have treated her with chemo and antihormonals (US) or with antihormonals alone (UK). I believe she is now 2 years out. Not all insurances pay for the test I believe, but the number that do is reportedly growing as more and more papers come out about its help in making treatment decisions. See if you can email or PM her--I am sure she would help.
I know Dr. Slamon has said that he thinks the OncoDX doesn't tell you anything that a good ER, PR , FISH for her2 and Ki-67. But your friend's tumor seems unusual in the following way: most her2+ tumors are not well differentiated
The OncoDx test is still in a clinical trial to determine if it should be used to guide treatment and allow some patients with very low likelihood of recurring or metastasizing to avoid chemo. In the EU tumor guidelines were such that small ER+ tumors which were her2- have for many years been treated without chemo(St. Gallen guidelines)
The good news is that they found your friend's tumor early that it sounds like it is tiny (you didn't gave a size or sizes) and sounds as if it is very unagressive ie, well-differentiated and Grade I. If only the DCIS and not the invasive component was her2+, then according to my readings and conferences I have attended, current US guidelines recommend giving chemo to every patient with an ER+ patient with an invasive component, no matter how small. Recent research has tended to shown chemo to be ineffective in these ER+her2- tumors and
I guess the standard of care will change with time. In the meantime, an OncoDx test might make your friend and the doctor more comfortable discussing other options.
So a lot depends on whether only the DCIS was her2+ or if the inflltrating foci were as well. If your friends infiltrating tumor is itself her2+,it would be most unusual, as her2+ tumors are RARELY Grade I. If there is any doubt, there is such a thing as a second pathologic opinion (you just arrange to send the slides).
I am in no way qualified to advise on these matters, but am well-read and post information frequently. Welcome to the board.
You have one lucky friend (to have you on her side)!
Hi Lin! Your friend is really fortunate to have you by her side. I know she is panicking right now, and I know that's alot on your shoulders as well. Please understand that you both are in our thoughts and prayers. From personal experience, I think at least a CAT scan is in order, and I'm not a medical professional, but any test she can have at this point, do it. My wife was dx with dcis in 2004, underwent rads., no chemo., stage 0, then had a gallbladder attack and surgery on 12/1/05 discovered liver mets, automatic stage IV. The surgeon said this was really unusual, it just didn't happen, but it did. We still don't know exactly what happenned, but we talked alot about it and after hearing other stories, we felt that dcis is often pushed under the rug as a minor thing. I'm not trying to worry you unnecessarily, but please do all you can do- second and third opinions, keep a journal/notebook of questions, consult the site here, and most doctors do not object to you even taping the visits. Human nature-you get hit with too much info. at once and sometimes you can't absorb it all. Studies have shown that the human short-term memory can only hold around 10 things at once, and when more items are "inserted" into the short-term memory, something is pushed out, only it's not first in, first out, it's random "forgetting". If I'm wrong here, someone please correct me. That's why, as you and your friend talk, jot down questions to ask at the next visit, and also read everything you can at the doctor's office. We always found medical journals to read while waiting, and don't be afraid to pull your friend's chart out of the door chart holder while waiting in the exam. room. That's your info. and alot of good questions come from reading your chart. Be aggressive. "the squeaky wheel gets the grease". Love and prayers, Bill
First let me thank ya'll for your prompt replies. I'll try to answer some of your questions. Annette is 67 years old, her Mother had breast cancer in her 30's and had a radical mastectomy, her mother's sister had breast cancer when she was mid 50's and died of it so there is a family history.
Prior to her surgery they did another mammogram on her and during the mammogram they inserted a wire around the suspicious area so that the surgeon would know what area to remove because you cannot "see or feel" micro calcification's. That tissue sample was 5.1 x 3.7 x 1.7 cm.
The path report isn't clear (to me anyway) if the stainings were done on the IDC or DCIS. The FOCI range was from 0.3 cm to 0.7 cm in greatest dimension. There is nothing that refers to KI67. At the bottom of the
report it states "These immunohistochemical stains were performed on formalin fixed, paraffin embedded tissue. ER antibody clone is CF11, PR antibody clone is 1E2, and HER-2/neu antibody clone is 4B5. All procedures us an I-View DAB Detection system". I haven't a clue as to what that means.
I hope I've answered most of your questions and again Annette & I are most grateful for your responses.
God Bless and we're praying hard for a cure!
Lin (Pensacola, FL)
I'm having a terrible time replying. I write my reply and when I hit submit reply it sends me to a login screen even though I'm already logged in.
And I lose every thing I've written, what am I doing wrong?
Lin
As I said, if it the DCIS was her2 positive and not the invasive foci (which were well differentiated and GradeI) the treatment would could be much different than if the invasive foci were her2+ as well.
In light of the strong family history your friend has, the medical literature supports an MRI is indicated (guidelines wise,this is helpful in trying to get Medicare to pay for it--since your friend is over 65, I am making an assumption (perhaps I shouldn't)
Has anyone in her family been BRCA1/2 tested? I believe Medicare pays for BRCA1/2 testing as well--it may be important for the sake of other family members (whose insurance may not pay for it)
her2+ breast cancer does not tend to be BRCA1/2 positive, but it has been known (I believe one person at least on this board is +)
The picture you paint with several infiltrating foci (which are not just microinvasions by your description), but Grade I well-differentiated and her2 status + but unclear if in DCIS only, infiltrating ductal component only or both, is confusing--
.
If the infiltrating portions of the biopsy turn out to be the her2+ areas, then your friend is lucky to live in Florida. Two of the country's (if not the world's) experts on her2+ breast cancer are there--these are among those who have published the most, been involved in the development and trials of herceptin and continue to write papers and educate others on the topic at conferences. Dr. Mark Pegram moved to Miami this summer from UCLA and Dr. Edith Perez, who was head of the North American herceptin trials as I recall is in the Mayo Clinics Branch there in Jacksonville. I am not speaking from any knowledge of them as treating doctors, just on the basis of having read their papers and heard them talk at conferences.
(also, Not being much on Florida geography, I don't know how far these are from Pensacola.)
Perhaps the Mayo Clinic branch could do a second pathologic opinion, with your arranging for a second opinion based on their findings ie, whether or not you are dealing with her2+ breast cancer.
To explain: DCIS is felt to be a precursor of invasive ductal breast cancer, but a much higher percent of DCIS is her2+ than IDC is her2 + ie not all DCIS that invades remains her2+. If the IDC is not her2+, it is believed that it behaves according to the other markers found ie, ER,PR, Ki67 in the infiltrative tumor itself.
Hope some of this helps...
Hi Lin,
Lani did a detailed job with her explanation of DCIS/and/IDC.
I am sorry that your friend has been dx. with breast cancer, but you have found this site and it will offer to you great support and information.
As Lani mentioned it is unusual for Her2 to be Grade 1 and well differentiated. But it does happen, my tumor was small - 6mm, was
Grade 1, and well differentiated. I had a lumpectomy and sentinal node biopsey. The node was negative, which is favorable, but please do know there are millions of cells in a small tumor and can pass through or enter the blood system. While this is not the route of choice, the ususal is via the lymph system. I did read many research articles about recurrence
in node negative patients.
All of the dr. recommended lumpectomy to be followed with radiation treatment, then anti hormonal (Arimidex). I had to fight to get a Oncotype DX test performed, since the dr. in NY did not feel it was gold
standard of treatment. My insurance was great and paid for the test, it came back with a very high risk recurrence score. The dr. were now changing their recommendation. I decided to see Dr. Slamon out in Calif.
He believed that the Dr. in NY had missed the call, since my KI 67 level
was at 40% which is high. He tested me for TOPO 11 which I was negative, therefore A/C would not be the chemo of choice for me.
He recommended TCH and herceptin for one year. He told me at that time TCH was just as good as A/C without the risk of heart
issues. The 2nd year data was just released and the TCH tretment is a slight difference with no heart damage when compared to
A/C. I did have PT/CT and bone scans done prior to chemo/herceptin treatment. I completed my treatment and I am now on anithormonal therapy (Femara).
I will share with you that there is controversy when it comes to treatment with small tumors. Many onc. are still making treatment decsions based on size of tumor. I attended a session in SABCS on this topic. Dr. Hudis
from Sloan in NY has a very conservative approach. Some dr. will do an Oncoypte test and if it has a score of 30 and better will then consider chemo. Some dr. are starting at a score of 25 it depends on the patient.
I do think that since you are not that far from Miami (about 550 miles) it might be in your friends best interest to see Dr. Pegram. He worked with Dr. Slamon at UCLA and they are cutting edge. He can review and check the pathology of your friend. Please know that Her2 likes to travel and it is very possible to have a very small invasive tumor be grade 1, node negative, well differentiated and be a very aggresive tumor. If you have any questions
please feel comfortable to reach out to me. This is a special site and you will have support along iwth up to date information.
Your friend is fortunate that you are by her side.
Sending all good wishes,
jean
Hi Lin,
Lani did a detailed job with her explanation of DCIS/and/IDC.
I am sorry that your friend has been dx. with breast cancer, but you have found this site and it will offer to you great support and information.
As Lani mentioned it is unusual for Her2 to be Grade 1 and well differentiated. But it does happen, my tumor was small - 6mm, was
Grade 1, and well differentiated. I had a lumpectomy and sentinal node biopsey. The node was negative, which is favorable, but please do know there are millions of cells in a small tumor and can pass through or enter the blood system. While this is not the route of choice, the ususal is
via the lymph system. I did read many research articles about recurrence
in node negative patients.
All of the dr. recommended lumpectomy to be followed with radiation treatment, then anti hormonal (Arimidex). I had to fight to get a Oncotype DX test performed, since the dr. in NY did not feel it was gold
standard of treatment. My insurance was great and paid for the test, it came back with a very high risk recurrence score. The dr. were now
changing their recommendation. I decided to see Dr. Slamon out in Calif.
He believed that the Dr. in NY had missed the call, since my KI 67 level
was at 40% which is high. He tested me for TOPO 11 which I was negative, therefore A/C would not be the chemo of choice for me.
He recommended TCH and herceptin for one year. I did have PT/CT and bone scans done prior to chemo/herceptin treatment. I completed my treatment and I am now on anithormonal therapy (Femara).
I will share with you that there is controversy when it comes to treatment with small tumors. Many onc. are still making treatment decsions based on size of tumor. I attended a session in SABCS on this topic. Dr. Hudis
from Sloan in NY has a very conservative approach. Some dr. will do an Oncoypte test and if it has a score of 30 and better will then consider
chemo. Some dr. are starting at a score of 25 it depends on the patient.
I do think that since you are not that far from Miami (about 550 miles) it might be in your friends best interest to see Dr. Pegram. He worked with
Dr. Slamon in UCLA. He can review and check the pathology of your friend. Please know that Her2 likes to travel and it is very possible to have a very small invasive tumor be grade 1, node negative, well differentiated, but be a very aggresive tumor. If you have any questions
please feel comfortable to reach out to me. This site will offer you up to date information and tons of support.
Your friend is fortunate that you are by her side.
Sending all good wishes,
jean
suzan w
12-31-2007, 06:57 AM
I don't have much to add but do want to mention that the Oncotype test was a very helpful tool in helping me make treatment decisions. I have since found that most Her2+ breast cancers test fairly high on the oncotype test...backing up the statistics that Her2+ breast cancers are more agressive and tended to have a higher recurrence rate (before Herceptin). My insurance company refused to pay for it, but the folks who do the oncotype test were awesome and filed appeal after appeal on my behalf and my insurance co (Blue X of FL at the time) finally paid after a year!!!
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