Calling All with Tumors 6 cm +
Comments
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I found my lump and reported it. All the tests indicated that I it was "nothing to worry about." Fast forward a year and I finally have a biopsy and the rest, as they say, is history. People sometimes (not realizing they are upsetting me) imply that I was not aggressive enough with my doctors and that's why I ended up in this spot. I have come to the point that I just ignore them because I don't want to focus on the past. Often, this is pretty difficult to do, but I try.
J-bug, I wish I had had a bmx. I do worry about that remaining boob.
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I have to be honest only one person gave me that "how could (they/me) miss a 6.5cm tumor? He's young. I don't think he realized what he was implying especially when I told him I had been getting my mammos. Most people don't understand things like dense tissue, location and a bunch of other stuff that can keep these things from hiding. I just wish I was told more than to "look for lumps".
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I think from now on, when asked, I am going to politely say that I don't want to share such personal information, avoiding it all together.
I have told women that the idea that cancer tumors don't hurt and don't move under your skin is a big fat dangerous lie and if they feel anything different at all to aggressively talk to their doc about it.
As far as feeling around during BSE's in different positions, I agree. My remaining breast has a hard area that can only be felt when I am lying on my opposite side. Next MO or RO appt I will be asking about it, and may request US or MRI, which I have never had.
And I had several healthcare providers feel what WAS a cancer and say, "it doesn't FEEL like cancer." to me too. Gah! That fed my denial system perfectly. Kwim? -
Twistedsteel just tell them it was 61cm and see how they react
(keep it an odd number so it sounds realistic)
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After reading thru the posts, I decided to google the medical literature to learn more about breast self exam. What I learned is there is no reduction in breast cancer mortality when women preform regular breast self exams. There is only an increase number of biopsies of benign lesion. I think there is a need for more accurate imaging of dense and premenopausal breast tissue. I'd like to see much more research on this topic rather than more awareness - which in my case, awareness didn't help at all.
While reading on line I came upon the funniest article. The author starts the article by describing an elderly lady who discovered her own small, early stage breast cancer. She only needed a lumpectomy - no chemo or rads. Hurray Hurray. Then later in the article it talks about the futility of breast self exam INCLUDING the fact that those of us who don't have early stage cancers feel guilty. IMO classic case of why we feel guilty when we don't discover our own tumors. We are subtly and not so subtly being told that is is our fault, even though there is no scientific data to support this belief.
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I did feel some guilt about not finding mine, because I didn't check on a systematic basis.
However, I also felt just plain stupid when I learned that it's less than 10% of bc diagnoses are an inherited form. I kept thinking that there was no bc in my family, so I didn't have to worry about it. I wasn't being stupid, but certainly uninformed!!
Later, I learned that there were three cases in my family: maternal cousin, paternal aunt and grandmother. Two were premenopausal and could have contributed to an inherited form.
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OK. I have to chime in here. My mother had breast cancer so I was super vigilant about mammograms (starting in my mid 30's), never missed a year. Also had a breast exam by my doctor every year. Everything was fine. Good for me!!!!!!
Then in Nov 2006 my mammogram showed a small area of micro calcs. I thought - Great I caught it early and my vigilance has paid off.
Fast forward to biopsy and lo and behold they find ILC. I am still thinking, OK, we still found it while it was still small.
Breast surgeon scared the hell out of me and my husband (he had to leave the room because he thought he was going to be sick) by telling that ILC is very sneaky and that I needed just about every screening test there was before she would operate because it could be a lot bigger.
Long story short (too late I know
) I ended up with a 9 cm tumor and 2 + nodes. Even after the MRI and the BS knew it was at least 5CM she still could not feel the tumor even though she knew right where it should be!!
I guess my point is that I hate the blame the victim game, either with ourselves or others. Breast cancer is an evil beast and an equal opportunity attacker. We do what we can and sometimes it helps and sometimes it doesn't. It really is all a crap shoot and we need to STOP THE BLAME GAME!!!!!!!!!!!!!!
Just saying. Cyndi
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I think for all of us and every other sista, it can't be said enough.
Breast cancer Fu**ing sucks in every way for every one of us, our families and our friends.
It is a horrible nasty sneaky son of a b**ch.
It takes so much an gives nothing back.
Of course, this is true for every kind of cancer.
But I only know how it feels to have had a big ass large tumor that somehow adapted to T and AC after the first infusions in my breast.
I honestly don't care about having lost my breast, and maybe both in the end. I hate that for the rest of my life I will be living in suspense... Will it come back? Is it growing somewhere else? Will this f**ker kill me or did I kill it?
I m a little agro today having lost a friend yesterday to stomach cancer. She was a light in the world that should never have been lost so soon. -
Leanna9, no worries. I think I don't express myself very well sometimes and written words can be misinterpreted.
Twistedsteel, I agree this cancer stuff stinks.
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Lago... I couldn't agree more with your statement... I SO wish I had not been deceived in believing I was looking for a lump!! Even my GYN said my "mass" felt like nothing... it moved and it "changed" with my cycle... Also FNA was Negative (not that they should have even done one... Rad doc asked for core needle biopsy first).
Cyndi - Well said! My mom also had BC... she 55... me 41... hers noninvasive... mine invasive... a bit late on my annuals, but all clean! BSEs.. seemed fine. I don't get how my mammo was clean just before biopsy, and ALL I get for follow up on the other breast is annual mammos?? Is that the definition of insanity???
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Leanna your follow up should include physical exam and probably MRI. NCI standard is not MRI but a friend of mine had the same issue. Because of dense tissue her cancer was found by the MRI. Both she and another friend were going to an NCI approved center and wasn't doing MRIs. Her friend went to my onc (different treatment center not NCI approved) to get a second opinion.
My onc agreed that she should be getting MRIs but felt it was silly for her to have to change treatment centers just so she could get an MRI. She (my onc) actually wrote a letter to her onc stating this. (My onc is pretty well respected in the industry). Now my friend and her friend both get MRIs as well as mammo on their remaining breast (tests 6 months apart).
So maybe you need to get a 2nd opinion at a non NCI approved center.
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hi ladies
i need an opinion - i found this thread after doing a snb biopsy search. I don't have a 6cm plus tumour but a nasty her 2 one nonetheless
i had neo adjuvant chemo and a SNB at the time of surgery. Surgeon only took 2 sentinal nodes - both completely clean
fast forward 3 wks i was getting to start rads and they tell me i could take a pass (originally they said i would have to b/c i had LVI) i said no way, i want rads to the axilla b/c they did not take any axilla nodes
should i have insisted on a full ALND even though my sentinals were completely clean after surgery and i did not present with any nodes clinically prior to chemo? i figure the rads will get any micro mets in my axilla if there are any after chemo
HELP!!!!
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Rozem I sent you a PM
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http://community.breastcancer.org/forum/91/topic/776527?page=1#idx_8
rozem: You may this link above to be of some benefit. I was trying to compare AND to SNB and making that choice. But, your situation is different. You already had an SNB. I was told that I needed to do rads to the axilla because of the large tumor size. I had clean margins and 4 nodes taken, all clean. I think that I just talked myself into a circle. I don't really know the answer because my decision was based on tumor size. Maybe someone else here knows...
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J-Bug there are so many things that go into the decison for Rads now. I rember my PS telling me that. Even he doesn't keep up with it anymore. Tumor size of 5cm is usually a yes but I was in a grey area and got a pass. Granted you were 9 years younger than me at diagnosis and had SNB instead of level one nodes like I had so maybe that's part of it too.
BTW that link above should be: http://community.breastcancer.org/forum/91/topic/776527?page=1
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thanks j-bug/lago
i am mtg with the head of breast oncology tomorrow and will pose this question to her. I will most likely go for rads to the axilla as planned next week b/c i don't want to put off rads any longer (5 wks post surgery)
j-bug - thankyou for the previous post, helped me feel better about this decision. And you are correct - i have talked myself into circles over this one, i feel like a dog chasing its tail sometimes
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Rozem, I had neoadjuvant, surgery with two SNs taken out. Both were clear. The Radiology Oncologist gave me a program of rads to axilla and supraclavical. This decision was based on the size of the tumour but also because there is a low chance of LE after radiation if you only take out a sentinel node or two. Better safe than sorry?
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Hey cdairth....I guess I don't really belong on this topic because my tumor is "only" 2cm, however...I have been doing self exams and mammograms for 33 years (because my sister came down with BR CA when she was 26...and I was 24 at the time) and I NEVER felt anything with my tumor. I still can't. Even the doctors can't feel it....so I could definitely understand how someone could not feel a tumor even 3X bigger, because it also depends upon where it is on one's breast. Deep vs. shallow, under arm vs. next to the middle, etc., etc. So...next time someone asks why you weren't more "aggressive," just smack them for me!
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my lumpectomy removed 7 cm and the surgeon took out almost that much when he did the mast - had clean mammo, doctor exams, etc .... only thing i felt was a slight 'ridge' .... so yep i'm with debbie don't let anyone (or yourself) give ya grief
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cdairth - i have sent you a PM
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Lago - thanks
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I'd like to ask BCO's moderators to revise the tumor size setting to include larger tumors, rather than simply lumping us off into "6cm+" (Ack, forgive that awful, unintentional pun!)
I know BCO is planning changes to the site and that they are accepting suggestions. Would this be a good one? Or would you gals prefer to stay in the nebulous zone?
My own tumor was a series of "skip lesions" that measured a horrific 13 cm (more than five inches) which was pretty much the entire lower half of my B-cup breast. But the largest single tumor I had was 5 cm, so that's what I put in my signature. (Haha, that's what I tell myself to stay calm, actually.)
I might put 13 cm if I had that option, if for no other reason than to stimulate discussion, since the things we large-tumor gals have to contribute are important to this community at large.
I submitted some other suggestions to the mods, and have a contact if we want to ask for the size choices to expand upward. Opinions?
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Windlass I know what you mean. In my case my tumor was 6.5cm but for diagnosis they only use the invasive part which was 5.5cm. My tumor was both IDC and DCIS. I didn't know what to put down as far as size.
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Wow, I uh, am in amazement that all of you define yourselves as 'cancer analyzed' by BSBC, HER1+ , state -whatever and et al.
We are us, no; I mean, is it easier to live with being defined as a diagnosis.
I'm just trying to find the right bra substitute (silicon melted on my body) , and how do I wear my hair without coloring it--no go with chemo.
Maybe I need some ideas, please. Thanks!
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goforhope I know I put my information down not for me but for others to see. When I first came here I wanted to understand my diagnosis. The best way was to ask people who had similar characteristics. Knowing the details is important for this perspective.
Are you looking for a prosthetic bra? There are some places that do sell these items. I'm sorry I can't make a suggestion but there are other ladies that might be able to help.
Are you not coloring your hair because you are doing chemo? When I was on chemo I just wore scarves. I hated my wig.
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Hi, thank you for your reply. Yes, trying to get the right prosthetic bra. The last one 'melted' on me! They are running an analysis on it. We'll see. Def not getting one of those inside my body! Big prob with PIP implants.
Yes, I do color my very short hair--I tried scarves and they itch. But, would if I could. This has been going on for 7 years.
Just found this forum.
There are too many of us suffering!
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Goforhope check out these links:
All things bras & prosthesis
http://community.breastcancer.org/forum/82/topic/781208?page=1BreastFree | The Alternative to Reconstruction
http://breastfree.org/viewer.php?num=42I know some women have made forms from Styrofoam microbeads that are much lighter/more comfortable. Someone here posted a pattern with directions but I don't remember who.
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Are any of you big tumor girls going to have Xeloda or have any of you had Xeloda?
That is my next stop on the cancer treatment train. Waiting for my oozing open wounds to heal from rads along uni-MX incision site. Then the Xeloda. I know there are a couple of threads out here about Xeloda. Just wishing for a comrade from this thread... -
Lago
I found your earlier post interesting and hopeful. You said that you or possibly your docs or pathologist had a 6 cm tumor but that your area of involvement included dcis. So for your tumor size only the invasive part was counted as tumor. Do I understand that right?
If that is the case, I had a 9 cm area of involvement. I have IDC but 30% of that area of involvement was dcis. If I go by what you have been told then my ' size' was 6.3 cm. Am I thinking of this right? Is that how your doc or path calculated yours? If so then I am better off.
I always wondered how have 30% dcis in my idc played into things. -
luckypenny My path report stated that the measurement was of the "invasive component only" (which was 5.5cm) but the DCIS was 25% of the tumor which would make the DCIS around 1 to 1.5cm. I know the MRI showed the tumor to be 6.5cm the mammo 7cm total.
So I would ask your onc to explain how your tumor was measured. My path didn't give a measurement of the DCIS.
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