Calling All with Tumors 6 cm +

 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.  

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?

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.

http://articles.cnn.com/2009-11-17/health/breast.cancer.self.exams_1_breast-cancer-routine-mammograms-cancer-awareness?_s=PM:HEALTH

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

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.  

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.

Rozem I sent you a PM

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

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?

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.

Goforhope check out these links:

 All things bras & prosthesis
http://community.breastcancer.org/forum/82/topic/781208?page=1

BreastFree | The Alternative to Reconstruction
http://breastfree.org/viewer.php?num=42  

I 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.

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.