Apr 11, 2014 07:03AM mjsgumbas wrote:
springsoon - great news!!! Hope it continues and you get thru chemo with minimal side effects!
Posted on: Nov 6, 2009 11:53AM - edited Nov 23, 2009 11:18AM by Warrior517
I am so thrilled we finally have a place to call HOME here! I was diagnosed w/IDC last year at the age of 39. It was in 2/6 lymph nodes. I was also HER2 and Estrogen Positive.I had dbl mastectomy w/implants. This summer, one of the implants failed. So, I underwent a DIEP procedure w/Dr. Massey and Dellacroce in New Orleans. Great Outcome!! I did TCH for six rounds, rads and a year of Herceptin. I am currently on tamoxifen and Boniva (study).
I just wanted to start this thread for those that had it spread to lymph nodes. I can't tell you how many threads I have read that said "thank God, my nodes were clear"...we all weren't as lucky. BUT I believe God puts people in our path when we need them most. Last year during Rads,I met an older lady(she was there for her hubby) who told me that she was a 30 year survivor and Yes..It was in her lymph nodes! The job of the lymph nodes is to catch that little sucker!
Posts 2071 - 2100 (2,242 total)
Apr 11, 2014 07:03AM mjsgumbas wrote:
springsoon - great news!!! Hope it continues and you get thru chemo with minimal side effects!
Apr 11, 2014 09:12PM springsoon wrote:
Thank you! Had a great day yesterday with great news about my CT-scans. Today, was a little bit different though. Hate this cancer roll-coaster. Went to my radiation doctor for the first visit before my treatment starts. Since my chemo will start first week of May and will last 18 weeks radiation will be scheduled no earlier than late August. I was diagnosed with both DCIS and IDC, with clear margins for IDC but positive margins for DCIS. My medical oncologist ignored the fact of the positive margins for DCIS but radiology doctor didn't. He said that he wants his pathologist to review slides from my surgery, particularly that positive margins go into muscle with lymphovascular invasion present. It freaked me out completely!!! I asked him how DCIS (which is non-invasive) can have positive margins with lymphovascular invasion. It is contradictory and he agreed - that's why he wants to clarify this pathology.
Has anyone found any info or had the same problem?
Apr 12, 2014 09:51PM Maureen1 wrote:
I hate the BC rollercoaster...Sounds like they got it backwards, cancers like DCIS shouldn't have anything invasive so that path doesn't make sense? Hang in there, sounds like your RO is looking out for you and making sure they get it right...let us know what you find out...
Apr 28, 2014 05:52AM HomeMom wrote:
CT scan today with two of three node involvement. I worry about the total number since I just had an SNB done and had a high percentage come back positive. It's been nothing but bad news after each test. Has anyone else felt the same way?
Apr 28, 2014 11:52AM Maureen1 wrote:
So sorry you're not getting good news…yes, I understand how you feel…I remember the fear and feelings of shock as I got my initial pathology and then the pathology from my nodes...it may not be easy to believe right now but once I got all the details and had a treatment plan to fight this beast I felt better and things settled down for me. Hang in there…(((Hopeful Hugs))) Maureen
Apr 28, 2014 02:18PM HomeMom wrote:
Done with the scan now the wait begins and the fear as my doctor's office leaves a message to come to go over the results. I have to stay positive that it has not had a chance to set up shop somewhere else! If it is clear I am going to celebrate and get pumped for the rest of my treatment!
pray pray pray!
Apr 28, 2014 05:11PM Just-julie wrote:
I usually don't have lots of information or advice, but the one thing I know I can do is pray!!!!
I am stopping by the boards actually looking for advice for a family member and thought I would check in on my favorite board. To all of my beautiful sisters going through or just finishing up treatments, my heart is with each of you.
If you read my bio and it seems I can be of any help in any way, feel free to PM me.
WE are survivors!!!
Apr 28, 2014 07:01PM Girlstrong wrote:
homemom.... I know how scary this can be. I will pray for you. Stay strong, trust, and have faith.
Apr 29, 2014 02:00PM Xrayalli wrote:
Springsoon-believe me, I sure know how you feel. I am the epitome of "you're clear, wait, no you're not". My mammo was read negative, then I looked at it and asked for magnification views (I'm a mammo tech). I was told it'll be fine. The day after my biopsy i was told I have DCIS. Had a lumpectomy and the radiation oncologist gave me results (he just happen to be the one to access them first) of clear margins. My surgeon and I asked each other why the specimen radiograph showed calcifications that were not mentioned in the pathology so he asked for the slides to be looked at again. This came back as multi-focal DCIS! A MRI then showed 3 suspicious areas, now I needed a mastectomy! Had a SNB as a precaution and had 1 positive lymph node with macromets. Sigh, it was just more bad news one right after the other. I thought I was gonna die but this week I will be halfway through 18 chemo treatments. I got out of the radiation but will need more surgery for recon. I'll be thinking positive thoughts for you and all the lovely people here. HANG IN THERE!
Apr 30, 2014 04:41AM HomeMom wrote:
I'm curious, where is everyone? I see some cities/towns, but not all. I am in Orlando
Apr 30, 2014 07:06AM Rosiesride wrote:
Hey Xrayalli...as a mammo tech I wanted to ask you a question but before I do this is my deal:
I have only had mammos/ultrasounds...diagnosed with ALH in 2004...never given tamoxifen...feel like I totally fell through cracks on this one... diagnosed Dec. 17 by feeling a nodule under my arm...lumpectomy jan 3 2014...3/11 nodes positive with LCIS throughout right breast, ILC dx...not sure of the size of the "cancer" as their were a few spots but from the path report it states "invasive component size greatest dimension: several tumor nodules noted with the largest two measures 4.5mm"...my question is: WHO is the best person on the team to really explain and understand this report?? Is it the Oncologist, radiation oncologist or surgeon??? It is so confusing to me and I am in the midst of gathering information and questions for 3rd opinion and revisiting my surgeon as I am deciding on BMX or keeping lumpectomy...I also don't like seeing " POSSIBLE DCIS noted pending immunostains" whatever that is! Anything pending should be completed in my thinking!
Your post just shows how we need to really understand our reports, etc...you are in the field so you knew what you were looking at...since the rollercoster of treatment has settled down for me and I feel like I am (was) on an even keel, I have been trying to really learn and understand and make the correlations of various things in my report. Maybe I have too much time on my hands but if one doc says, LCIS is not concerning (largest LCIS covering an area of 1.6cm) and another feels it is a reason for BMX, I need to know why they differ in their concerns?
Sorry for ranting...just interesting that you persisted with your surgeon and thankfully found out more and will fix it...I am going to go over my path report very carefully with my surgeon and ask for explanations on things I don't fully understand and then ask her about pathology slides. Thanks for your information which will hopefully help me find our more about mine!! Rosie
Apr 30, 2014 07:30AM Headeast wrote:
Rosie, in my case, all the 'suspicious' areas were positive in the pathology report. I am glad I opted for the BMX.
To all the ladies in this thread: just stopped to say hello and to wish you a prompt recovery. I am now on Tamoxifen, since December 25, had my reconstruction on January 31 and have scheduled my nipple reconstruction on May 16.
All treatments seem never ending, but they actually do. Stay strong, be selfish during this time. This time is for you only. You wont be able to help others if you don't take care of yourself during this time. If feeling tired, rest, sleep. It is all about you. Once it all passes your life will go back to normal in days, don't worry.
Big hugs to all!
Apr 30, 2014 01:42PM Xrayalli wrote:
Rosiesride-I truly trusted my surgeon's opinion the most when making all my decisions because he knew how much tissue really was involved and realistically whether another lumpectomy was going to cut it, so to speak. You mention bilateral, is your other breast affected at all? My surgeon left that decision to me but felt I made a good decision to just go with having only affected breast taken off. That really is a person to person thing, I feel, the bilateral vs. unilateral. The decision between lumpectomy and mastectomy I asked my surgeon to honestly tell me what he would do if it was his daughter, wife, etc. as a side note, the radiation oncologist was not very receptive to treat me with a second lumpectomy knowing the MRI had showed multiple suspicious areas. That was another reason I went for a mastectomy.
Apr 30, 2014 01:57PM Rosiesride wrote:
thanks xrayalli...mammogram on left breast were never suspicious and I haven't had an MRI ever, but I will ask my surgeon why bmx? Maybe as prophylactic or since I have LCIS through out right breast? Your reply was helpful and thanks! Rosie
Apr 30, 2014 05:30PM Xrayalli wrote:
Glad it helped. I think a lot of people want the symmetry of a bilateral, too. Each person is different on this subject. I hope my response wasn't too confusing. I had met with a radiation doc initially because I was supposed to only have a lumpectomy and radiation but the second read on the pathology changed everything, now no radiation needed because I had all my nodes removed and they were clear.
Apr 30, 2014 06:53PM Rosiesride wrote:
I do know that I will need radiation no matter what I decide...so I meet with radiation oncologist may 22 and I need to have a decision by then pretty much....last chemo is June 2 nod ...then radiation a few weeks after that...I really do not want a bmx....hoping there is more sound advice on why it will be ok for me to keep lumpectomy! Praying....always!
Apr 30, 2014 08:54PM SpecialK wrote:
rosie - if you think about what each of the docs do it helps to narrow down who will understand and explain your reports best to you. A breast surgeon is an expert in what is in the breast - what type of cancer, where it is, how much of the breast is affected, and the likelihood of the contralateral breast health. Generally, they can advise what type of surgery is best to remove known cancer, or minimize risk going forward, depending on the type and size of the cancer. The breast surgeon is also good at knowing what type of imaging will reveal issues if you have density, or did not have a clear result with mammography. Many require a pre-surgical MRI. If you are concerned about being advised to have a MX or BMX, having additional imaging done may help inform your choice. Oncologists are experts in systemic treatment - they know what types of chemotherapy and hormonal therapy are correct for different types of breast cancer. If chemotherapy is recommended, they can advise whether having it before (neoadjuvent) or after (adjuvant) is most beneficial. Different types of cancer, with different types of hormonal receptors and Her2 status can require a more specific approach and oncologists can offer the most advice about this. Radiation oncologists know what areas require radiation - whether they be whole or partial breast, or axilla, superclav, etc. They can explain whether in individual cases mastectomy negates the need for radiation, or if it does not, why that is. Radiation oncologists can also explain the different types of radiation - how many weeks for standard external beam, or brachytherapy (internal radiation), or IORT, which is done at the time of surgery, and whether these options exist at the facility you are being seen at. A rad onc can explain who is, and is not, a candidate for each type of radiation.
May 1, 2014 08:52AM magdalene51 wrote:
I was dxed 4/16 with IDC and told it was grade 2 but nothing else. Knew there was at least one node positive from the biopsy, but MRI shows there are more. I don't have the path results in my hand but got a call with more results: ER+, Stage IIb. I see a surgeon next Tuesday. I'm preparing myself for BMX with no reconstruction. So I've joined this club, and no offense, I'd rather not have.
May 1, 2014 10:13AM Maureen1 wrote:
(((magdalene51))) so sorry you have to join us, it's tough to be blindsided by this beast and I know it was very hard for me to hear that I had "node involvement" but having a plan helped me deal with the fear and anxiety - and some Ativan helped too:) There are lots of women here to provide support and answer your questions. I hope your visit with the surgeon goes well on Tuesday...(((Hugs))) Maureen
May 1, 2014 10:20AM Rosiesride wrote:
specialK...thank you for the clear explanation! The surgeon who did my lumpectomy is a general surgeon... she felt a bmx would be something to think about and to do my " homework" while getting chemo, before radiation...my second opinion , reputable doc who specialized in sentinel node biopsy, looked at my pathology reports and we had a phone conference ( I sent reports to him)....he felt keeping my lumpectomy would be fine unless I tested positive for BRAC, which I did not...his percentages on chance of recurrence over lifetime was much lower than my general surgeons explanation ., by half...on Monday I will meet with a 3 rd surgeon who is a breast surgeon and then meet back with my general surgeon to share my feelings and review all the information I gathered...so 3 surgeons later will hopefully give me peace of mind because I want at least a few more years to live life " normally" and if things get too worrisome for me, I can revisit bmx without reconstruction....but thank you so much for your really good information! I will let you know how the visits turned out...in the meantime I am organizing my questions to ask!! Rosie
May 2, 2014 09:10AM HomeMom wrote:
My BS did a lumpectomy but did not get clean margins so she wanted to do another lumpectomy, certain she can get it all. Only problem was that she wanted to take the nipple. If you're going to take the nipple and I really don't' have much breast tissue to begin with, I decided on a mastectomy. My PS felt it was the right thing to do as well, get it all, leave nothing behind.
May 2, 2014 12:23PM SpecialK wrote:
rosiesride - glad to help!
May 3, 2014 12:26PM magdalene51 wrote:
I received my pathology report this morning and have been going over the details. I've updated my dx so it should show up below. One thing is the Ki-67 number. Looking at the pamphlet from the main site on understanding your pathology report, the only thing I could find on it is in the Word List. It says, "Ki-67 test: A test that shows how fast cancer is growing"
Here's what my path report says:
Ki-67 Percentage Positive 30%
Clone 30-9 (<10%=Low; 10-20%=Borderline; >20%=High)
Does this mean that my cancer is growing fast? Anyone know?
The other thing is the staging. They are saying on this IIb-III.
May 3, 2014 05:18PM - edited May 3, 2014 05:18PM by placid44
I have read that a ki67 (cancer cell proliferation rate) of lower than 10 is slow growing, 10-20 is intermediate, and over 20 is fast. Mine was 70.
May 3, 2014 05:22PM - edited May 3, 2014 05:27PM by placid44
Mag, for staging with a 3 cm tumor you would be stage 2 unless you have four or more positive lymph nodes...then you would be stage 3. If you have no positive lymph nodes, then 2a, if 1-3 nodes, then 2b.
Why does your sig line say "mets?" that usually means distant metastasis to organs and is stage IV.
May 3, 2014 07:44PM - edited May 3, 2014 07:47PM by magdalene51
Placid, I put that in because the pathology report says metastasis. The node they biopsied is malignant. The MRI showed "Int mammary nodes not usually seen on MRI" whatever that means. I do not remember seeing any notation that "mets" was reserved to distant metastasis. Once it's on the move, does it matter so much to where? However, for the sake of harmony, I shall remove the designation.
(By the way, the question in the dx section reads: "If your breast cancer is not recurrent, is it metastatic?" It's multiple choice. What else should I have put?)
May 3, 2014 11:02PM Nocompromises2013 wrote:
You are both right - but in the context of that Q - no you do not seem have distant metastasies - yay !!!!!
Placid is right ... You don't have metastasies in the true technical sense of the word. Ie distant part of body and set up its own tumour system, blood supply etc.
True It has somehow moved to a lymph node thru natural lymphatic drainage but hopefully it was/is just 'caught' there by your immune system and hasn't had a chance to get established further afield
do you know is it just one node or more- is it extra capsular? or still contained ?
Hope that helps.
May 4, 2014 10:16AM Rosiesride wrote:
hi mocompromises2013...from your signature dx it looks like you only had right mastectomy? If so, would MRI be the best way to know what left breast looks like? I had lumpectomy on right January...I am now researching stats on umx for right breast no reconstruction....ahhhhhh! So hard!!
May 5, 2014 05:32AM Nocompromises2013 wrote:
yes you are correct Rosie. UMx and no MRI - I asked BS but he said they use it for Dx but mine was so obvious and multi focal that Mx was only option - I twice asked him about BMX and he said only 1% greater chance of contra lateral than anyone else !!
I am not interested in recon on only one side. Quite happy to wait a few years to make sure I don't have any other curve balls - my BS told me you have to be very determined that you want recon as it is a long process and I know I really don't care for it - too hard for an optional procedure in my book. But we are all different :)))
I am due a mammo in 2 weeks and I needed a chest X-ray for a suspected broken rib which was fortuitous as I got to have another peak at what is going on even if an X-ray might not be the best way to do it it's another piece in the jigsaw !!
An MRI would be added insurance to see what's going on I guess but what will be will be - good luck on your research -
May 5, 2014 06:45AM SpecialK wrote:
Magdalene - there is a difference between loco/regional metsastasis to the lymph nodes, and distant metastasis to bones/lung/liver/brain, or elsewhere. When you see mets in the diagnosis it suggests a distant metastasis and stage IV diagnosis. The mets line and a lower stage makes this unclear. If you just indicate the number of positive nodes, out of the total number of nodes removed, it communicates that you had a loco/regional metastasis to the nodes only, but no spread out of the breast and lymph node area. Even though this sounds a bit confusing it communicates more clearly what your individual situation is.