Stage change after 5 months

Are you saying that both your original BS (which I assume is still in the picture) and your original oncologist got the diagnosis wrong?

Hi Butterfly53

A slightly similar thing happened to me back in 1999. I was originally diagnosed has having a 1.8mm tumour and 1 lymph node under my arm had cancer. I was not staged but my plan was to have radiation then chemo after a lumpectomy. 3 weeks later I felt a node in my supraclavicular area which turned out to be cancer so had to start chemo more or less immediately. No doctor, at the time, could have predicted the supraclavicular node being cancerous as there were no signs. I didn't know then as much as I know now and there were not so many options available. but sometimes I think that a good thing and I just followed my doctors advice (more or less!).To jump from a Stage II to a Stage III can sound quite frightening. I was never staged so found out myself I was a Stage III as a, b and C didn't exist! As long as you go for the right treatment initially that is the probably best thing to do. I am surprised you have not been offered chemo.

I wish you well with what you now face and hope you make the right decisions.

Sarah

Hi Butterfly,

So sorry you have this concern. . Let me explain something that is not relayed typically to BC patients;

There are 2 ways of determining a BC stage.

One is Clinical Staging ,the other is Pathological Staging

Clinical Staging-A person who has neoadjuvant chemo (after her biopsy , but before her breast surgery) gets staged only on the clinical findings: Doctors exams and scans.

She then has her chemo and depending on how she responded to chemo has her breast surgery. (Often times a person who has neoadjuvant tx has more invasive disease then originally staged , simply because of the limited information of clinical exam and scans only.

rememember pos nodes frequently do not show on scans,( none of my 12 showed up on my PET) as well as other positive findings)

Pathological Staging-A pathological stage is determined when the patient has surgery first; sentinel node, axillary clearance, mastectomy, etc. Based on the Pathological report ( from the specimens obtained duirng this surgery ) then determines the extent of the BC , and thus a Pathological staging is obtained. Then she has her chemo...

It's a bit of a debate which way to go Neoadjuvant(before surgery) or Adjuvant( after surgery Chemo) However, there is very little statisical difference in the overall outcome for a patient.

I am acutely aware how we all get caught up in staging..It's something we all do..... but staging is only a tool that drs use to determine treatment. Please don't get upset by the staging change.On exam I was a Stage I-II. I went with Adjuvant tx WAS stage IIIC. I will be celebrating 10 years of good health in 3 months.

Hope this helps..

Butterfly, we seem to have had similar experiences, although no one on my team neglected to check anything.  Mine was just an odd presentation.

I saw a 3" "red spot" on the skin of my breast one morning, with peau d'orange texture within it.  My gyno sent me for mammo, then ultrasound, then biopsy of the 1.2 cm lump that was just under the red spot.  It was IDC, and everyone thought it was tiny, very early, pop it out with a melon baller and we'll be finished.  So I had a lumpectomy.

The lumpectomy had clean margins of the small lump, but the sentinel node was positive, so my surgeon did an axillary dissection.  We were all surprised (...horrified...) when the path report came back with 4 out of 28 nodes involved.  I saw my new oncologist not long after that, and she was the physician, out of all that I'd seen already, who wanted a biopsy of the "red spot."  So when I had my port placed, my surgeon took a big chunk 'o red spot, and it was filled with dermal lymphatic cancer emboli.  It was in the skin.

Game change.  Now we were throwing the kitchen sink at my breast.  First TAC chemo, then a unilateral mastectomy.  I'd wanted to remove both at the same time, but my plastic surgeon wanted me to keep my healthy breast intact until reconstruction.  Then 38 radiation treatments, and my radiation oncologist didn't want a tissue expander placed; he wanted the targeting of the radiation to be perfect.  Wait, wait, wait, for the effects of the radiation to settle down.   Nine months after my last radiation treatment I had a DIEP recon.  

I'm happy with my choices.  Yes, I've had a lot of time in the operating room lately, but after spending a year with one boob, I either wanted to be flat or have a semblance of both breasts. 

I hope this helps!  Please feel free to PM me if I can answer any questions or be helpful in any way.  And just know...you WILL get to the other side of this huge speed bump.  The fear and shivers, the "cancer radio playing in your head 24/7," will get better.  Blessings to you as you navigate through this.

Butterfly: I agree with everything you said. I also feel like the left hand doesn't know what the right hand is doing here, in a way. I was referred to a certain surgeon by so many people, both medical and non medical. He seemed slightly annoyed when I asked certain questions regarding the reports. I say if you are not comfortable with your doctors (and I totally get why you are not), to get more opinions.

Trvler and Butterfly--"annoyed," coming from a physician providing your care, is not okay.  We are the guardians of our own bodies, and our physicians are our employees.  We hire them to do a job for us.  It's important to establish a collaborative "vibe" with all the doctors on our team--they're working with us to save our lives.

I've been a nurse for almost four decades now.  At diagnosis, knowing how medical records and physician's offices function, I knew I needed to be the central depository for all things breast cancer.  At the very beginning, I bought a huge binder and dividers that I labeled with stuff like lab results, pathology reports, imaging reports, surgery reports, chemotherapy, radiation therapy, billing.  I faithfully obtained and filed everything, and took my "Viking Chronicles" to every appointment.  I can't begin to tell you how many doctors asked to look at my binder because they wanted the latest labs, or the path report, or something...and rather than fumble around asking other providers to find and fax a copy, I had it right there.  It also gave me a small sense of control over the whole fandango.

If ANYONE asks "why" you want a copy of anything in your medical records, they are totally out of line.  By law, you have a right to that information and don't have to justify your request.  My response would be "why do you want to know?" 

That's interesting, Momine.

I just keep thinking about people who are really sick and can't advocate for themselves. I keep thinking I want to somehow help them. Or elderly people….it makes me sad.

Butterfly - how similar yours and my stories. The difference is the team of docs saw me as Stage 1 or 2a at the most but without lymph node involvement. I've learned not to rely on the PET or MRI much, as did those prior to double mast surgery and nothing showed positive, and actually the tumor showed to be less than 1/2 what the actual size was after surgery !! So jump-shoot me into Stage 3 after that. I knew I didn't want implants because of all the negative data and having to replace after 7-10 years, so opted for the DIEP. Had to travel out of state to a plastic surgeon trained for the diep. This was a major surgery and I was under anesthesia for 11 hours. I was lucky that I didn't have complications, but my end result after 2 revisions is not entirely satisfactory. I had less than 2 mm of skin layer on the radiated side and a good 1/2 inch thickness on the other side, which poses a problem or two like having less tissue to work with, etc. My PS did a good job, with what was there to work with. I put off reconstruction for almost 2 years after surgery, although the surgeon suggested at least 6 months. This gave me time to research all options using my own tissue such as the IGAP, Tug SGAP & DIEP. As far as your story, I would do what your gut tells you. For me it was an easy choice to have double MX. I have several relatives that have fought BC.

Sbelizabeth: I too have a binder or two which came in very handy when my PS wanted copies of my bilat mast surgery. And recently now have changed health care plans due to husband retiring and losing the employer plan. So now have put all my records on CD for the new onc. Did your PS have to take a vein from another part of your body , i.e., sowewhere in the leg? This I was told may have to happen if a vein in the chest was not viable or too small. It was amazing I didn't have more complications other than my arteries kept hiding (as he put it - made it a game of hide & seek).

Be well everybody!

shelly

Hi Butterfly, if I understand correctly you were staged prior to surgery, i.e. were evaluated for clinical staging by medical oncologist and radiation specialists who gave a slightly different assessment. There was no pathology report other than from biopsy. In the absense of pathology staging it is one guess vs another. And staging itself is no more than a classification code that does not guarantee any outcome - good or bad. The chemo you were given would be the same even for stage IV.

Speaking of reconstruction I think it is very important you find a good PS whom you trust and who will be willing to work with your RO.

In my case, I had a small tumor and very early clinical staging before surgery - MRI did no show any suspicious spots; I was told I only needed surgery and would not require radiation or anything else. Ended up with Stage 3A. Still glad I had immediate reconstruction despite the fact that most of my issues during active treatment were caused by reconstruction.

Best of luck to you!

Shelly, I am glad that it worked out for you.