Calling All with Tumors 6 cm +

Anafoefana

Again I think when you tell someone they would feel the lump if they knew their body, your're adding to the notion that the victim is somehow to blame for her own cancer. In my case, a very large cancer. I dont think that if you had my breasts and my cancer, you could have felt it. After I wrote that post I remember the radiologist, breast surgeon and oncologist palpating my breast, no one felt it. Neither did I and neither did my husband. Cancer is awful enough, please don't make it worse by implying I should have detected it sooner.. More than anything else, I wish I had discovered it before it was huge.

I also had problems breast feeding on the bc side 7 years b4 dx

I breastfed my daughter 1998-2000 and had extreme problems with blocked milk ducts and mastitis all along. I thought it was just part and parcel of being an older mother - I was 35. So different to my experience with my first daughter 14 years earlier - breast feeding was a breeze. Now I think that was an early warning sign of the cancer. The mastitis was in the cancer side too but I had blocked ducts o. Both sides all the time. I had a BMX and the non cancer side - cleared by MRI so prophylactic, was examined and found to contain multifocal LCIS. The signs are easy to see in hindsight! I also had for the last couple of years pre dx, a deep tingling itchy feeling in the cancer side on occasion - no other signs till I found the fibrosed thickened area this time last year.

Anafofana



Apology accepted. Thanks for the kind words

Question that has been going around in my mind for a bit.  Wondering if any of you ladies can shed light for me.  What is the point of a SNB *after* the neoajuvant chemo?  I mean to say, if the chemo worked as it should, then nodes SHOULD be negative right?  Wouldn't a SNB before the start of chemo give a better picture for the docs to go by? 

Maybe I need a hobby or something to better occupy my mind   Just thinking back over my treatment and now thinking that the SNB I went through (very painful) wasn't necessary.  Before starting chemo, the docs noticed "enlarged" axillary lymph nodes, as well as an enlarged intramammary node.  The surgeon thought he could also palpate enlarged axillary nodes.  They did an ultrasound guided lymph node bx which was negative.  At that point, it was *my* impression that there was no cancer in the nodes so they did not persue it.  

Fast fwd to surgery time, the doc tells me he will be doing an axillary node dissection.  I tell him no, I don't want to those nodes messed with since they were negative.  He tells me the other option is a SNB, so I agree to that.  During sugery all nodes are negative, and they determine that there was a 100% response to the chemo.  

Fast fwd again to my consultation with the rads doc.  He insists that I need aggressive rads, based on the size of the tumor, and on the "clinically positive" intramammary node.  He says that he only very rarely gives rads to the IM nodes, but that in my case he strongly recommends it.  He further tells me that he believes there was cancer in my axillary nodes, "they just didn't find it".  

I'm planning to raise these questions when I see my MO next, but not sure I will get answers.  the MO who was treating me initially has left the practice, so this guy doesn't know my case as well.  I'm just wondering if there is a difference of opinion between the 2 offices or what. And if it matters, I was treated with 4 AC dd, surgery 3 weeks later, then started 12 weekly tx of Taxol 4 wks post surgery.  Got tons of rads: 38 tx, supraclavicular, axillary, intramammary and along the "mastectomy bed".

5kidsmom,

My RO convinced me to do radiation on the nodes also because of the size of my tumor.  She presented my case to the interdisciplinary board at the hospital and based on current research, she felt  and everyone on the board agreed that it was really important to have them done. I didn't show any node involvement in the beginning, but I don't know if I had micromets.  I had a SNB, she took 3 nodes and nodes and margins were clear.  The RO said that coming out of neoadjuvant treatment it is hard to say that the nodes were not involved and she told me that without radiation, my  odds of recurrence increased significantly.  So, I have 3 more rad treatments on my whole breast and nodes, and will have 8 boosters on the lumpectomy site.  The way I saw it, if I am getting radiation anyway and it improves my odds, go for it.  

J-Bug, I am sorry you are having such a hard time with rads.  I am doing okay with them.  My armpit is sore, but nothing terrible.  I quit wearing a bra this weekend, because it was rubbing.  I am wearing a camisole with a built in bra, and it is working.  I hope your burns heal quickly.  I am using Miaderm, emu oil and aquaphor nightly.  I have also been putting aloe vera on right after the treatments before getting dressed.  I just fan myself dry and that seems to help cool things off right away. 

I have to share a story.  I mentioned I work with children with autism.  I have one little guy that has been pinching breasts.  On Friday I was putting another child in a chair and this little one ran across the room and from behind me put his arms around me and pinched me as hard as he could.  He could have at least pinched my other side!!  I screamed so loud that it startled everyone.  I was in a lot of pain for the rest of the day. I told my assistants I may have to take leave until he stops doing that!!  It hurt! Never a dull moment in my classroom!

Back to reality tomorrow.  I hope everyone has a great week. 

I used emu oil and cocoa butter on the radiation burns. The emu oil I special ordered and waited for smelled just a touch rancid, so I only used it a couple of times. (And sheesh, it was $24 for 3 or 4 ounces!) I attribute these oils to the great, great, great response my skin had to rads. Just enough pinkness/redness to let them know it worked, but nothing more than that.

Wow ladies.. I feel I must come to Anafoefana's defence.. I do not believe she intended to offend anyone. I for one enjoy her postshe has a lot of knowledge to share. I also found my large tumor after having a clean mammo.. If I did not know my body I would not have found it.. I do believe Anafoefana meant to point out the importance of doing your self exam not rely only  on drs.

5kidsMom things happen so fast at the beginning for all of us. I wish I knew more too. Don't be concerned that you didn't get "standard care". Just because it's standard doesn't mean it's right for you. Standard care for premenopausal women that are  hormone positive get tamoxifen. My onc put me on Anastrozole because she felt my cycles at my age (and family history) would not come back. Not standard care but I'm fine with that.

My onc first diagnosed me with LE but didn't send me to a PT. When it continued to get worse I then contacted my PS. He sent me to a specialist who then sent me toa PT. My onc is great but this was the one time she didn't seem too concerned so I just moved on to the next MD. My PCP is also great. I'm sure your PCP will send you to a PT at least for an evaluation.

Wow... again I apologize if I offended anyone by my comments.  I was only saying what I thought, it never occured to me that it was offensive.  I am sorry.  What else can I say? I  would really appreciate it if we can just let this go now.  We are all going through this and there is no need to be hurtful or sarcastic. Ossa, you are right,  I was merely trying to stress the importance of self exams.  Maybe it won't help everyone, but it does save lives. It certainly did mine.  I was not due for another mammo for several months and had I not felt my tumor I would probably not be where I am now.  

5 kidsmom and Ossa, my skin is doing well.  I am slightly pink, mostly tanned. I don't know if it is the emu oil, or the combination of that with Miaderm, aquaphor,and aloe.  I really like emu oil, it doesn't have a smell and is absorbed quickly.  

Going to pick up some emu oil after treatment today, sound like it is worth trying.

Windlass.. Well said.. I have asked myself many times.... how could I not have found it earlier... I have done self exams for years as I have had lumpy breasts for as long as I can remember.. But then again.. when I went to my doc he was not concerned as he said the lump did did not feel like a cancer lump?????? Yes I am getting a new doc when I am done with treatment...

Hope you all have a great day.. You ladies going through rads, slap on the moisturisers.. For you ladies going through chemo.. remember your meds.. For you ladies recovering from surgery.. Listen to your body  do not over do it even if you feel you can.. Whatever stage you are in your treatment take some time for yourself today and be proud of how far you have come in this journey none of us want to be part of.. Hugs to all

windlass - size doesnt really matter.  Mine was only 7mm, not even 1 cm, and it had spread to 3 lymph nodes. I feel like I didn't even get a chance to find mine!

Missy is correct. Size doesn't matter. We are the same stage yet my tumor was 6.5cm (5.5cm invasive) but I have no nodes. The other issue is some of us have really fast growing tumors so a year can make a big difference. My BS said I had my cancer for only 4 years! Also location and density of tissue complicate finding these things. But again I was not offended by anafoefana's post. One thing I have learned on this forum is at times people to misinterpret peoples intentions when they post. We know who the "bad girls" are and they are not on this thread.

I did not mean to come off like I apparently did... I guess other's have nailed it... after hearing at first, "at least you caught it early" (because I found it, so they 'assume' it was early)... to reality, which is I didn't catch it early, but rather early enough  ... I am sorry.  It is never my intention to make anyone feel bad... I'm sorry, Ana.  I just feel jipped... my boobs aren't huge but my tumor was... how is that possible.  And, my onc found a lump in my left breast 2 weeks ago, that I had not felt... WTH?  It turned out to be a fat lobule (after MRI)... but I had been doing BSEs in the shower, and this lump was not palpable while standing... so remember different positions when feeling!!! 

Again, I'm sorry