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Topic: Something About My Diagnosis Doesn't Add Up

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Apr 25, 2020 12:04AM

wtfwiththeusername wrote:

I'm 69 years old, diagnosed at 68 less than a year ago. 9mm IDC, emphatic grade 1 (a 1 on all 3 factors), sentinel node negative, no lymphovascular invasion, Oncotype 11, very highly ER/PR+, HER2 negative. In short, the typical indolent old lady cancer. I've had mammograms faithfully for years. Don't have dense breasts. My mammogram in July 2018 was negative. I felt the lump in my right breast in June 2019 and went for my annual mammo shortly thereafter. Alerted technician who referred it for an ultrasound and the rest was history. What doesn't make sense and worries me is this: given all the characteristics of my cancer, it was nonaggressive and slow growing. Would have been of sufficient size in 2018 to be detectable. It wouldn't have gone from microscopic to almost 1cm in a year's time. So they missed it (and it was a 3D scan). OR, the pathologist has underestimated the grade and it was more aggressive than reported. I live in a remote mountainous area of Colorado and while the area medical resources are well regarded, it's not exactly Sloan Kettering. Wondering if anyone has had similar concerns. And whether I should request (demand) that more than one radiologist reviews my next mammogram. Appreciate any input.

Dx 7/11/2019, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 8/1/2019 Lumpectomy: Right Radiation Therapy 10/4/2019 Whole-breast: Breast Hormonal Therapy Arimidex (anastrozole)
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Apr 25, 2020 01:57AM ShetlandPony wrote:

Perhaps the tumor has been there a while but only recently reached a size where it stood out against the background and looked like anything. Djmammo would be the person to ask.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Apr 25, 2020 04:16AM Bright55 wrote:

Hi sorry that scan has shown changes ..try not to second guess the change that has occurred ..cancer is good at hiding some types even are not visible so difficult to diagnose

starting treatment is now the priority..

it was same for me one year nothing next bc hormone positive.

All the best

Bright in hope

Dx 2011, DCIS, Right, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 2016, Right, 2cm, Stage IV, metastasized to lungs, ER+/PR+, HER2- Hormonal Therapy 10/4/2019 Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Mastectomy: Right
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Apr 25, 2020 09:27AM - edited Apr 25, 2020 09:28AM by Beesie

I found this in one of DJMammo's posts:

Ask an Expert: Breast cancer growth rate

"With most breast cancers, each division takes one to two months, so by the time you can feel a cancerous lump, the cancer has been in your body for two to five years. It can certainly seem like a lump appeared out of nowhere – especially if you or your doctor have recently examined your breasts and not felt anything suspicious – but in reality, the cancer has simply doubled that one last time necessary to be noticeable. By the time you can feel it, a breast tumor is usually a little more than one-half inch in size – about a third the size of a golf ball. It has also been in your body long enough to have had a chance to spread.

This sounds scary, but what it really underscores is the importance of regular mammograms. These screening tests can usually detect breast cancer when it's about one-quarter inch in size or smaller – a year or more before it would be detectable by hand.
"

And here is another article I found:

How Fast Does Breast Cancer Start, Grow, and Spread?

""Doubling time" is the amount of time it takes for a tumor to double in size. But it's hard to actually estimate, since factors like type of cancer and tumor size come into play. Still, several studies put the average range between 50 and 200 days."

So from the first source, it says that a 1/4 inch tumor is about smallest that a mammogram can find. That's 6mm. Even assuming that your tumor was extremely slow growing - not doubling every two months as per the first article but instead doubling every 200 days (i.e. approx. 1 and 1/2 times per year) as per the slowest estimate in the second article, it means that your 9mm tumor would have been 3.25mm in size a year earlier. That is too small to be detected by a mammogram.

I know that somewhere I've seen a visual of this - the size of the tumor over periods of time as it doubles - and I'll see if I can find it.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Apr 25, 2020 11:58AM Angelanotangie wrote:

I have had a somewhat similar experience with my diagnosis. I’m only 44, with dense breasts though.

My last mammogram had been 12/2018 and at that time they had been focusing on my left breast. I had been going every 6 months for the magnified views and ultrasound for a year and a half, finally ending in a benign biopsy that December. 11/2019 had my yearly appointment with breast exam, “everything looks good, make sure to get your mammogram done”. 1/15/2020 mammogram, 1/28 magnified views and ultrasound of right breast, 1/29 biopsy, 2/3/2020 given diagnosis of DCIS. Went to first appointment on 2/17, told I have DCIS and IDC, and by the way instead of a lumpectomy w/radiation you’ll need a mastectomy because the tumor is 30 mm. The 1/28/2020 ultrasound found that my lymph nodes were clear but my doctor “felt something there” and we need to check it out. The lymph nodes ended up being positive as well.

So yeah, my first question was how the hell did this happen?? They blame my dense breasts, of course and say it may have been hiding. And yes they say it’s a slow-growing, nonaggresive type blah blah but it sure doesn’t seem that way. My Onco score is 14 but I have to get chemo because of several factors that say the cancer didn’t behave the way they expected it to. I start treatments on 5/15.

I’m doing my left side later this year. I don’t trust that they’ll catch something in time and frankly I don’t ever want to go through this again. I always say that you have to be your own advocate and if you think something isn’t right or want more eyes on it, speak up!

Best of luck to you,

AS

Dx 2/3/2020, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (IHC) Dx 2/17/2020, IDC, Right, 3cm, Stage IIA, Grade 3, 2/11 nodes Surgery 4/2/2020 Lymph node removal: Right; Mastectomy: Right Chemotherapy 5/15/2020 AC + T (Taxol) Surgery Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Radiation Therapy 10/15/2020 Breast
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Apr 25, 2020 01:40PM wtfwiththeusername wrote:

Thank you all so much for your replies. I asked my MO about this and got a thin smile and shrug in reply. He's a good guy but a hematologist by specialty. I don't think oncology or breast cancer in particular is his main thing. So, Beesie, the information about tumor growth is very helpful. Glad there are such knowledgeable people on this site. IDCDCIS, I'm so sorry for what you are going through. You do everything right and look where it gets you. Stupid disease. And way too many young women under siege by it. I shouldn't complain. Wishing you the best.

Dx 7/11/2019, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 8/1/2019 Lumpectomy: Right Radiation Therapy 10/4/2019 Whole-breast: Breast Hormonal Therapy Arimidex (anastrozole)
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Apr 25, 2020 01:41PM Beesie wrote:

IDCDCIS, wow, your diagnosis must have come as a shock! Your situation is different though because of your age and breast density. High breast density is common in pre-menopausal women - about 75% have dense breasts - and it's well known that mammograms can miss breast cancer in dense breasts.

I was diagnosed at 49. I had extremely dense breast tissue. Because I'd been dealing with breast issues almost all my life (I had my first surgical biopsy at age 16), I never missed my mammos. One year my mammo was clear, and the next year two small areas of calcifications showed up - not highly suspicious but enough to warrant a biopsy. My stereotactic biopsy found only ADH, my excisional biopsy found grade 3 DCIS with comedonecrosis in both areas along with a microinvasion of IDC. Having no clear margins, I proceeded to a MX, which found a lot more high grade DCIS. I did have an MRI between the excisional biopsy and the MX, and the MRI spotted the rest of the DCIS that my mammogram and ultrasound never found. Not quite the same situation as you, since my undetected invasive cancer was so tiny, but it makes the point about how much things can hide in dense breast tissue. One year my breast was clear, the next year my small breast was literally full of over 7cm of high grade DCIS, which had just started to moved beyond the ducts (the microinvasion).

In the OP's case, it sounds as though mammogram screening worked well for her, finding her cancer when it was still very small. A year prior, even if it was a slow growing cancer, it would simply have been too small to be spotted.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Apr 25, 2020 02:40PM Beesie wrote:

wtfwiththeusername (love your screen name, by the way), I couldn't find the graphic I was looking for but I found this one, which gives a general idea of how long it takes for a tumor to grow, and why it might be larger than you would expect when it finally does show up on imaging:


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Apr 25, 2020 03:43PM wtfwiththeusername wrote:

Very interesting. Kind of awful to think about the nasty buggers percolating away in our breasts for years and us going on our merry ways none the wiser. Yuk. I need to change my user name 🙄. When I was trying to set it up, I tried EVERYTHING. Kept being told they were all in use. In exasperation, typed in what you see. Oops...

From everything I've read and the information you gave, I'm surprised I could feel a 9mm tumor. I never did self exams. Was just sitting on the couch reading and felt it. Not sure what I was doing: scratching, wiping away perspiration (hot flashes!), but it focused my attention immediately. Maybe the location -- lower outer about 8 o'clock -- meant it was closer to the surface. I'm thin but my breasts aren't small. You'd better believe I'm feeling up both of them all the time now.

Dx 7/11/2019, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 8/1/2019 Lumpectomy: Right Radiation Therapy 10/4/2019 Whole-breast: Breast Hormonal Therapy Arimidex (anastrozole)
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Apr 25, 2020 06:41PM Sunshine99 wrote:

Hey whatthe... So sorry you're going through this. I chose my name and added some numbers since Sunshine was already taken.

Pick a name that suits you or makes you happy and then add your ZIP code or your mother's birthday or something like that! Have fun with it (we have to have some small part of this that amuses us, right?)

Wishing you all the best.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Radiation Therapy 5/5/2020 External: Bone Hormonal Therapy Arimidex (anastrozole)
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Apr 25, 2020 07:24PM OnTarget wrote:

My BS told me that it was lucky that the 5mm tumor in my right breast was found by MRI. The mammogram didn't see it. My breasts were dense, so that probably contributed.

They only looked for it after they found ILC in my left breast, but still interesting that a 5mm tumor would be hard to find.

So means to me that your tumor last year could have just been missed because it was too small.


Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 25, 2020 07:53PM exbrnxgrl wrote:

wtf,

My story is just that, my story. This not any kind of medical explanation.

I was dx’ed with stage IIB, grade 1, IDC in 2011. I had been very regular about mammograms and the one the year before had been clean. Following my bmx, but before any treatment started, I had an unrelated PET scan. Lo and behold a suspicious spot was seen on my femur, and it was later biopsied. It was indeed breast cancer, virtually identical to my breast tumor and still grade 1! My point here is that although there are generalities we can apply to breast cancer there are also unexpected exceptions and individual breast cancers don’t always behave in the same way even within a given stage or grade. Stay well

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Apr 30, 2020 06:56PM - edited Apr 30, 2020 06:56PM by ducky06

Hi wtfwiththeusername !

I agree with Beesie and others -- based on what I have read, it seems like it is completely possible that your tumor was not detectable size in August 2018. 1 cm is not a lot of growth for a tumor in one year. I have heard of HER2+ tumors growing a 1 cm in one month! It is pretty amazing to me that you could feel it! So your August 2018 mammogram was probably not a false negative and your pathology could be correct.

At diagnosis I had an 8 cm x 9 cm mass. It made my nipple invert, which prompted a mammogram five months before I was actually diagnosed, but I have very dense breasts and the mammogram came back as a false negative. It must have been at least a few centimeters, and was not visible on the mammogram. (I should have been sent for MRI at the time, but that's a different story-- I live in a rural area without much cancer expertise -- especially not in young women. I am 33 and doing chemo now since it's in 3 lymph nodes.)

After my experience I completely agree you have to be your own advocate, though. If it would ease your mind, you might consider going to a specialist clinic for your periodic screening. If you google "breast clinic" you can find the one closest to you.

Also-- if anyone is considering a second opinion on your pathology, both Mayo Clinic and Sloan Kettering offer remote second opinions on biopsy samples.

All the best to everyone!

ps: I like your username, it's spontaneous which is kinda fun!

Dx 1/30/2020, DCIS/IDC, Right, Stage IIIA, Grade 2, ER+/PR+, HER2- Immunotherapy 2/28/2020 Chemotherapy 2/28/2020 AC + T (Taxol) Hormonal Therapy Radiation Therapy Surgery
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Apr 30, 2020 10:19PM AliceBastable wrote:

wtfwiththeusername

My oncologist is also a hematologist. I had actually been referred to her for a wonky blood count issue. Before that appointment happened, I had the mammogram, u/s, and BS appointment, and got referred to the same oncologist I already was scheduled to see. And now she also tracks my blood work and for the kidney cancer I had. I don't know if all oncologists are hematologists, but I sure like that mine has expertise in both.


Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Apr 30, 2020 10:33PM - edited Apr 30, 2020 10:34PM by OCDAmy

Six months after my mammogram I felt a lump and was diagnosed with a 4 cm tumor and positive node. Dense breasts but no one told me that. I thought for sure it must be fast growing but it was grade 2 and my MO told me it had been there for some time. No doctor wouldsay that somebody screwed up but that's what I think. That's why I had BMX, I'll never trust a mammogram again.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/14/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 19, 2020 08:08PM Iamloved wrote:

So here is my story. Dx August 2018. At that time they biopsied 2 areas in my breast. The one at the 6 o'clock position came back triple positive grade 3. 2 weeks later as I am heading to the Mayo clinic for surgery I get a letter from Mayo which reads and I quote "We are pleased to inform you that your breast imaging evaluation is normal(shows no sign of breast cancer)." Also informed me my breasts are not dense. I showed the letter to my surgeon. She and her nurse had some awkward exchanges and then told me that it was a automatically generated letter. I accepted that as truth. I had my lumpectomy with no lymph node involvement and I chose 2 alter my lifestyle and try to get my body healthy to fight diseases. My doctor at that time at the Mayo Clinic recommended a six-month clinical breast exam and yearly mammograms. I did the clinical exam at 6 months with my primary doctor. At one year I had thermography a Baseline thermography test and then a second one to make sure that there were no changes. I usually check my breasts in the shower. I just don't know how I missed my new lump which now measures 7 cm. Strange thing it is in the location of the second biopsy they did in 2018. Now was it there back in 2018, did somebody read the wrong mammogram for me and send me the letter that I did not have breast cancer or am I just that unlucky to have a 7 cm tumor which is surrounded by numerous other tumors growing in my breast in less than two years time. Doesn't make much difference I can't change anything. Just wanted to add that perhaps tumors grow faster than what they know. Heading back June 8th for PET . I am Crossing my fingers that is localized. This last MRI showed no signs of disease in the lymph nodes so one good thing going for me. I'm not sure if I trust any test.

Dx 8/8/2018, IDC, Right, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/30/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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May 20, 2020 12:55PM jcp wrote:

Bright55, hello. How ate you doing,? I was wondering if you could give me some information if you know. I got br ca in late 2005. Grade 2, stage 1, lumpectomy, chemo, radiation whole breast. Anyway, a couple of months ago I finally saw an asthma allergy specialist. They did the routine chest xray and at first the PA at asthma place said it was fine that they usually worry about things other than calcifications area I had. Then two weeks later the PA calls me up to say that she reviews cases with the dr and he wanted me to follow up w pulmonologist. Ok finally got appt Apr television television and she says can't see it that well and that calcifications are in hilar region where everything comes together in lungs. Orders CT scan for tomorrow at 3:30 pm. Anyway, what I'm asking is how did you find out about lungs, only if you dont mind me asking. They are pretty sure it's okay but said chance it is not too where I would then need a biopsy. They are following up due to my br ca. So...anything you can offer for information would be great! Thank you. JCP

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May 20, 2020 01:02PM jcp wrote:

Bright55, I hope I put my question on reply to you just now. If not it is on this thread with your name first

Thank you, JCP

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May 20, 2020 04:31PM MelissaDallas wrote:

Iamloved, why thermogram instead of the Mayo recommended mammogram? Thermograms are specifically forbidden for use as breast diagnostic tools by the FDC as they are ineffectiv.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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May 20, 2020 05:23PM Iamloved wrote:

I was not using it for diagnosing. Mammograms are not diagnostic either. Both find suspicious activity but the diagnosing comes from ultrasounds, mri and biopsies. My point about the size of the new tumor that it may have been missed in 2018. It doesn't matter now because I can't change the past. So I wait for 2 1/2 more weeks for more tests and recommened treatment plan. I fear I won't have the surgery for at least 2 weeks after that. So another month for this to grow.😥

Dx 8/8/2018, IDC, Right, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/30/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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May 20, 2020 05:26PM Beesie wrote:

Iamloved, your situation is interesting. I'm trying to put the pieces together of what happened, and if I'm understanding correctly I think the letter from Mayo, while obviously an error, is a red herring. Since you went for the biopsies in August 2018, I trust that after your imaging in July or August 2018, you were informed by the Radiologist or your PCP or the Breast Surgeon that something of concern was seen and you needed to have the two biopsies. So this would mean your follow-up wasn't influenced by that erroneous form letter.

Did you ever get a copy of the imaging reports? And did you get a pathology report from the biopsies? Since your new cancer is in the same location as that second biopsy, it would be interesting to know what that biopsy found. It's possible - likely maybe - that the mass was there all along, but the biopsy happened to pull up benign tissue from the area of the mass rather than the cancer cells. What imaging did you have that led to the biopsies? A mammo, an ultrasound or both? After the one area was diagnosed, did you have an MRI prior to surgery? A lot of surgeons send their patients for MRIs just be sure that nothing else is going on.

Is this second diagnosis also HER2+? HER2+ cancers are particularly aggressive and fast-growing, so if it was there but small in mid-2018, 2 years later it could be quite large. If you extend the graphic that I posted previously, with a 100 day doubling time, a 2cm tumor would be 8cm within 2 years. You may have had a smaller tumor 2 years ago, but if it's HER2+, it might have a faster doubling time. Another possibility, if this tumor is not too far from the original cancer, is that this is a recurrence rather than a second cancer. Given the number of smaller tumors, that might be the case. Here again, with an HER2+ cancer, a short-term recurrence and fast growthwouldn't be extraordinary. Did you do rads last time round?

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 21, 2020 08:24AM Iamloved wrote:

Yes I have the all the info on the my Mayo clinic portal. I have even tried to compare the imaging. I believe you are probably correct about the 2nd biopsy in 2018 just not getting the cancer cells. Both diagnosis were from first feeling the lump, mammogram and ultrasound. This recurrence also included a breast MRI. In 18 days they will do a pet scan and another ultrasound on the left breast to check a spot the MRI found. My Doctor believes it correlates to an old calcification. No rads the first time as it was not in the lymph nodes. No sense dwelling on if it was there in 2018 because it definitely has made its presence known. I just hope it doesn't double in size before I get back to the clinic!! Your chart is very interesting thanks for posting!

Dx 8/8/2018, IDC, Right, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/30/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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May 21, 2020 10:11AM Beesie wrote:

Iamloved, it's really too bad that you didn't have the MRI last time - it might have spotted this while it was smaller. I know that MRIs result in a lot of false positives, but once someone has already been diagnosed, I really don't understand why all breast surgeons don't insist on an MRI prior to surgery, just so that they have as clear a picture as possible, before they go in and operate.

That said, you are absolutely right - there is no point in dwelling on the past.

Good luck with the PET. I really hope that this is a localized recurrence.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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