Papillary Carcinoma
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So visited my medical oncologist yesterday. It was a positive and supportive, confidence-building experience and I am sure of my personal feelings and pathway forward. I have done a good deal of research, but have been avoiding certain websites (and being a "google doctor") as the anecdotal discussions are generally on the scary to very scary side. It reminded me of my grandmother who knew 1001 ways to put out your eye.
Having facts has felt better for me and I did a good deal of fact-finding before my 2-hour (!) visit with my oncologist. (My background is in brain development/learning so this is a natural state for me...building the "coatroom" so I would have places to hang the overwhelming details I knew would be coming my way.) Basically, it's this: the onc laid out the factors in my personal background and medical history that said: Chemo and those that said: Chemo Not Necessary. In my favor were: post-menopausal; ER+/HER2-; negative nodes; very wide clear margins (9.8cm taken up/down; 9.5cm taken side to side; to a depth of 4.5cm...a lot of tissue!); healthy lifestyle factors, excellent health otherwise, personal feelings. On the Chemo side: size of tumor (2.5 cm). Onc said they used to advise Chemo if 1cm or >; however, recently they have decided that this factor is less weighty if others therapeutically overcome it. She discussed Oncotype DX testing - done at only one lab in US. in California and quite pricey given that it can offer assurance that chemo is necessarily the correct choice or is not for you. . It measures 21 genes in your particular tumor and assigns a recurrence score for this particular cancer. I gathered that for some this score would supply that particular piece to offer confidence in their decision to do Chemo or forego it. (A high score, for example, would almost certainly suggest the benefits of chemo would outweigh risks.) I declined the Oncotype DX testing as unnecessary to my own decision process, especially given that many other factors overcame a chemo choice in my case. I make no comment on the personal choice of others; in addition, I know that many insurances cover it as the test is less costly than chemo treatments. (If you are considering it, be sure to determine FIRST what might happen with your insurance and covering this test- for example, CA is out-of-network for me; my company would cover it, but only towards my O-O-N deductible...wow! Again, a very personal decision.)
The onc put it to me this way: "It is entirely your decision whether to try Chemo or not. Some women wish to be more aggressive and given your situation would choose it. Others are comfortable declining. Of course, at any time another different cancer could appear, and this test does not tell you that." Had she advised it or had the scales been weighted more heavily on the PRO-chemo side, I would be having a different thought process going on.
What's next? Plastic surgeon. I will be evaluated as this was a significant tissue lost and I am on the smaller side. I also have a radiation consult and would follow-through with that (I think) after any reconstruction surgery. I am still contemplating and investigating endocrine-based therapy, but should I choose it, that would start after radiation was completed.
From day one of the scary phone call: "We need you to come back in for a screening and ultrasound; we've seen a mass on your films." to the current: "Here's what we see; what we know and what we believe is a pathway forward for you. Let's discuss what works best for you?," I have felt supported and confident in my team. I know I am blessed. I hope this is the norm for all. I suspect it is not.
Thanks for listening.
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Cuddyclothes, may I ask why you chose to decline hormone therapy? I hope this not intrusive.
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Not intrusive at all! First of all, there is this article from the American Cancer Society blog:
http://blogs.cancer.org/expertvoices/2015/10/27/do...
I'm going to cut and paste my post on another topic.
My prognosis is "excellent". My Oncotype score is 3. With pills, 3.5% risk of recurrence; without, 7%. I've been on a f*ckton of medications over the years. The side effects have ALWAYS slammed me against the wall. More than one doctor has remarked on my "exquisite sensitivity" (I kid you not, that's the medical phrase). My side effects have side effects. My MO would prefer I would take AIs, but isn't pushing it.
My brain is already compromised. I've had some mini-strokes, cerebellar atrophy due to alcoholism which in turn has given me ataxia, and I'm manic-depressive. I have memory problems, fatigue, and have been hospitalized a few times. Somehow this doesn't feel right.
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cuddy, I thought you said you didn't get Oncotype testing. 3 is nice and low. I will have to decide if I want to use an AI as well....sometimes the quality of life, or lack of it, with side-effects aren't worth the small improvement.
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I got Oncotype testing done. It's covered by insurance here. The doctor said it was unusually low. The argument for taking the pills would be that I'm positive for estrogen something like 99% (have to go back and read all of the voluminous notes).
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Okay. Thank you for your very frank and forthcoming reply, cuddyclothes. I am looking at your stats and I am a little different in that my tumor was 2.5 cm; stage IIa, grade 2, ER+ (90%)/PR-/HER2-. So, I definitely understand the push for addressing recurrence robustly with AI's. It will be a question for me, too, as with you and Barbe1958. Side effects and risks weighed against benefits have so many issues woven in there besides simple gain. I declined the Oncotype DX testing for three reasons: it didn't appear particularly probative; the medical oncologist said all other factors (except tumor size) weighed against chemo and the genomic assay cost is personally prohibitive. Yes; I do understand the recurrence scoring, its benefits as well as psychological components and all the arguments for chemo. I am going to evaluate each step as I proceed, so the input here is important to my info-gathering process.
I would like input, if any are willing to share, about radiation therapy. AND, if anyone has been a candidate for brachytherapy. (A biozorb tissue marker - anyone?)
Thanks so much. :-)
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The surgeon already warned me that'd I'd probably have to do radiation which I didn't do last time, so I'm interested as well dragon. I was ER+ and slow growing so I knew chemo wouldn't work as chemo only works on fast growing cells.
I'm curious to see if my stats have changed.
Had my CT today from head to pelvis. Normally it's pretty fast but they must have taken me in and out 12 times! They also injected me twice and spent a loooooong time on my neck. I'll worry about it later. Bone scan Thursday....
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Check out the thread Fall 2015 Rads in the Radiation section. We were all going through it together.
It was rough, but not NEARLY as much as I thought it would be. The main problem was tremendous fatigue, and toward the end, my skin breaking out in itchy bumps. I had 13 treatments with boosts at the same time. It's called The Canadian Protocol. Shorter but heavier. It's take me a long time to come out from under the fatigue. But the skin problems and other SEs were minor.
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Thanks cuddy, I'm in Canada too and want this over with fast!
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Barbe, I'm in the USA. It's what they call it. The usual is longer, about 6 weeks. I didn't see a substantial difference in reactions between the longer and shorter times.
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Good to know. I had my bone scan today with a lot of unusual views - like putting my elbows to fingertips on the panel and having that scanned!?!?!? What the heck?
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Hi Everyone,
I just joined this discussion forum today. I'm 52 and have two school age kids. My journey started about 4 weeks ago when I found a lump (about 7:00) in my right breast. Followed that with mammo, ultrasound and needle biopsy that came back with an "atypical papillary lesion", apparently 2.8cm. I had an excisional biopsy a week ago. The surgeon called Thursday with the results: 2.1 cm encapsulated papillary carcinoma with associated DCIS. The margins were positive. He said I could do a re-excision to remove more tissue (I'm a D cup) with radiation or a mastectomy. They will also do a SNB. The marker analysis was not completed yet. I've read this is a slow growing cancer and am really hoping the nodes are negative. I am not eager to do radiation but I especially do not want to go through chemo.
I am meeting with a second surgeon this coming Thursday and I have a lot of questions.... I'm not sure what "associated" DCIS is, do I have both encapsulated papillary carcinoma and DCIS? I also read about "seeding"- the surgeon made an incision under the aerola to reach the lump at 7:00, could anything have broken off on it's way out, even though it's encapsulated? Can needle biopsies cause seeding? I had a huge hematoma after my needle biopsy- literally the entire bottom half of my breast was dark purple/black.
I don't have my path report yet, just what the surgeon told me over the phone (while I was in shock and not really listening properly), so I am really eager for my appointment on Thursday when I can get clarification.
When the needle biopsy came back with papillary lesion I spent a lot of time doing research so felt already somewhat familiar with the features of papillary carcinoma, but still have a lot of questions. Is it in fact invasive or not- esp if it's encapsulated? And I don't get the 'associated DCIS' part either. I know I will find out more on Thursday but it's so hard to wait.
Thank you so much!
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panky -
Hi! I strongly recommend you take a friend along with you to your doctor visits. That friend can write down what's being said, and later help you figure it out. That's what I've done, and it helps tremendously!
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panky, DCIS is often known as "pre-cancerous" cells so a lot of cancers show staging or architectural changes that end up turning into full-blown breast cancer. If the margins were positive that means the tumour wasn't encapsulated totally and had begun to grow out. With a slow growing cancer you wouldn't qualify for chemo as chemo only kills fast growing cells. Why are you seeing a second surgeon? Isn't the first one going to go in and take more? I, too, had a deep blue/purple lower breast the first time I had a needle (staple gun!!!) biopsy. This time I didn't bruise much as my breasts are gone. Seeding isn't as much of a concern as the fact they opened the tumour up to oxygen with the excision. That's what causes more mess if it's not cleaned out in a timely manner. That's also why with larger tumours they will try to reduce the size with radiation and/or chemo before they even try to take it out. Good luck and keep us posted!
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Thank you so much barbe and cuddyclothes
I'm seeing a second surgeon because frankly, I didn't like the first one! The first time I met him for my pre op appointment I felt that when I asked questions he was paternalistic and dismissive in his responses. I told him that I'd go forward and just get the lesion out with him but would want to work with someone else I felt I could communicate with if the news was bad and more surgery was needed. On my surgery day, I spoke with a radiologist who recommended a female surgeon and I'm seeing her on Thursday. Also, I picked up my path report today....it's pretty much what the surgeon said on the phone: papillary carcinoma, both features of encapsulated and solid papillary carcinoma, most consistent with encapsulated papillary carcinoma, DCIS is present, negative for EIC, pT2, Inking blue - entire margin assessment, still waiting for the marker analysis
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Panky, I'm sorry that you've found yourself a member here. I also had SPC (solid papillary) and partly encapsulated. SPC tends to have invasive components, so please obtain a second opinion on pathology. Yes, seeding is a concern, although few will admit it (due to pressurized cystic nature of EPC during core needle biopsy, which you also had). Is your tumor luminal A or luminal B? Your margins were dirty with which invasive component? Also would suggest MRI because SPC and EPC sometimes present in multiples, as does mucinous carcinoma, sometimes associated with SPC, although MRI will miss tumors under 5mm. Be cognizant of grading, especially mitotic index and proliferation rate.
You are wise to seek out other surgeons until you find somebody you're totally comfortable with. Best wishes, sister. We are here for you.
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Barbe, I'm so sorry, my dear sister, to read about your progressive state. Your history is not clear, and it's supposedly unusual for noninvasive EPC to go to mets. My first DCIS was grade III. Papillary with invasion is not always favorable. Did you have LVI?
There is a 27 EPC case study that had shown patients with no lymph node involvement progressing to mets years later, although they had high mitosis. My prayers are with you, sister. Please let us know how you're doing. We care.
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Panky, a breast MRI is an excellent idea!
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WeAre, I did have LVI on the first tumour which they saw during the MRI. I can't have MRIs anymore due to a pacemaker, but during the ultrasound this time I saw when she flipped it to colour that there was a blood source to the tumour so I knew....
It IS Papillary back again, confirmed by my onc this week. I am now on Arimidex and because I didn't do rads the first time I am starting them now.
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Barbe, so it's papillary again? You are certainly a rare gal! Invasive papillary is extremely uncommon amongst papillary subtypes.
From your response, your old MRI showed involved lymph node(s)? Was that invasion papillary or another invasive component, such as conventional IDC?
I'm curious to know because I had Invasive Papillary, Mucinous mixed with IDC and DCIS surrounding the tumor. I had 4 pathology labs review it, and none were in agreement regarding the invasive component. There are so many unknowns regarding papillary. From what I've read, it's especially high mitosis and the location of the original cancer which can sometimes contribute.
Many doctors don't recommend Oncotype testing because there is little data on invasive papillaty. I have also found that most know very little about papillary subtypes, so how can patients obtain the proper medical guidance and treatment?
By the way, there was a published Mexican study which showed a somewhat frequent recurrence of lumpectomy with rads in papillary with invasion. Sorry, but I don't recall the stats.
Also a 2010 BC San Antonio presentation mentioned a significant increase in cardiac events and in cardiovascular disease in BC patients taking A.I.'s. I think it was published in Science Daily? Also, patients on Arimidex need to read about that ESR1 mutation.
Sending warm thoughts your way....
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I only had Papillary so the LVI was related to the only diagnosis. When I was first diagnosed, I googled Papillary breast cancer and there were only THREE listings! All about the same "83 year old woman who presented with breast lump...." I know it's very rare. Maybe I should buy a lottery ticket. I'm guessing that's why it was missed on the first biopsy this year. My biopsy in 2008 was "worrisome for cancer" which is why I had a lumpectomy. When that came back as cancer with dirty margins I went for the double mast.
I already have a pacemaker so hope they will be monitoring my cardiac situation. Thanks for the heads-up.
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WeAreConnected, thank you for your response. I found out that my margins were positive for the papillary carcinoma, not the DCIS. My grade is 1 so that is good.
Decision Freak, I want to follow your treatment path. I have dense D cup breasts and spoke with the second surgeon about doing a reduction along with the lumpectomy. I'm normally a pretty good self advocate but I (sadly) found myself kind of lamely talking around it- going on about wanting to have more tissue taken out so I didn't have to worry about additional cancer/more positive margins/just want to get this behind me/ I have young kids etc. plus the fact that D cup breasts have bothered my back etc. She said, "so are you asking for a breast reduction?" and said she could send me to plastics for a consult.
I'm meeting with the plastic surgeon tomorrow. I guess I'm afraid that Kaiser is going to treat my request like a plastic surgery request, which wouldn't be covered by insurance. I know I have some rights under federal mastectomy reconstruction mandates and here in California, I found a Senate Bill that extends those rights to lumpectomies.
It's three weeks post op from my lumpectomy (lower right quadrant) and my right breast is already marginally smaller than the left. According to the WHO, encapsulated papillary carcinoma is to be treated like DCIS. My tumor was 2.1 cm but the surgeon said I was to be staged as Stage 0 DCIS. However, I know there is research out there that says that encapsulated papillary carcinoma is not always not invasive, but the WHO seems to dictate treatment protocol.
Does anyone know what my rights are as a patient? It appears that different surgeons and health organizations use different guidelines for acceptable margins. Am I allowed to request larger margins? The "established" organizations (e.g. WHO) state that margin size does not matter for reoccurrence. I get that doctors don't always appreciate patients doing their own research and bringing in this study or that and that they have to follow some sort of established guidelines. But where is the wiggle room?
P.S. I suppose I can ask for an MRI too, cuddyclothes
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I think you'll only find out about the margins by asking. It would surprise me if they said no. But larger margins, etc. don't stop the cancer from coming back. I can't backtrack your post...did you say you had dirty margins before?
Get a recommendation from your PCP that you need a breast reduction. Things you can mention:
Back pain, getting skin rashes under your breasts, muscle shoulder pain. I remember getting up a list with my doctor. But I was a GG/H, so getting medical approval wasn't a problem. Still, plastic surgeons probably do reductions and/or lifts all the time.
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cuddyclothes, yes my margins were positive for papillary carcinoma. Good news- I met with the plastic surgeon and she said she'd read my file and everything I'd communicated to the surgical oncologist and she recommended a breast reduction with my next surgery. This way, the surgical oncologist will have better access (the first lumpectomy was an incision right under the nipple to reach a lesion in the lower right quadrant), can take out as much tissue as necessary and the PS will go back in and finish reducing/straighten everything up and then reduce the other breast to match.
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Yay, panky! That sounds great!
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Hi Dragonflies, I was diagnosed with both papillary and DCIS at the end of last year. I had a mastectomy with clear lymph nodes end of January 2016. They did submit the tumors for onco type testing. The lab called me to let me know my insurance company didn't cover the cost, but the test would be covered (free) if I met certain criteria... Income, mortgage, etc. ...pretty liberal, I make over 60k, rent not own...OK you're covered at no cost. Long story short... Consider contacting the lab to see you qualify. P.s. my onco score was ZERO! of 100...only the second one my oncologist has seen...yay for me!
Good luck!
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Hi GophstopH-
Thanks for sharing your story, and contacting the lab is a great suggestion!
The Mods
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Hi Everyone
I'm wondering how many of those diagnosed with encapsulated papillary carcinoma have had radiation? I had two surgeries for EPC. After the first one, associated DCIS was also found. Seems like the WHO protocol for EPC is to treat it as a Stage 0 DCIS. My oncologist is suggesting tamoxifen and radiation (3 week Candadian protocol). But when I met with the radiologist today, she said that she thought that radiation was overtreatment for non invasive cancer and would personally not recommend it, especially if I was going to be on tamoxifen. She said that about 50% of women in my situation that she sees do decide to have radiation and about 50% don't. She said my chance of a recurrence was 5-10% and that radiation would halve that chance and due to side/long term effects/risks of radiation she preferred to recommend it when a woman's recurrence chance was 15% or more.
I find myself researching two areas- radiation and DCIS and radiation and papillary carcinoma, since I have both things going on.
Anyone in a similar situation or have input on the rad decision?
Best to all,
Panky
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I was diagnosed with encapsulated papillary carcinoma on 3/17. I'm going to have lumpectomy plus sentinel lymph node removed on 4/7/16. I was told if my cancer is found to be invasive then I definitely will have radiation and if it's non-invasive radiation is suggested for preventing recurrence.
Gami4415
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Good luck, Gami!!! We're here for you, sweetie.
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