March 2014 Surgery

Hey Julie - I would get a second opinion for sure.  When you are making such an important decision and have doubts then I don't think you have a choice other than getting a 2nd.    I would always be seconding guessing myself - mine is cut and dry - her2+ = chemo - however I am going to ask my MO if I am eligible for Taxol and Herceptin only regime only.

Julie, I agree with you. A second opinion is definitely needed. I don't get my numbers until the 24th and am hoping to avoid chemo like you. My surgeon has said all along that she couldn't imagine the board that she presents to recommending chemo. Now I'm worried.

SpecialK, thanks for that site.  I have very similar results as cancermath showing little benefit from chemo and survival rates over 95%.  The Oncotype score will help me decide.  On both sites I put 1.4 cm instead of 1 using the higher measurement from the first ultrasound.  Here is what Predict showed.

Hi there!!

After meeting with my surgeon today I now know the following The cancer was idc. . 2 of 21 lymph nodes had cancer cells so it did start to spread. I will be getting chemo as a precautionary measure and expect to have an appt with an oncologist in approx 1 week to discuss treatment. The surgeon wouldn't share anything else ie stage or grade of tumour. We will probably get that from the oncologist. I'm healing well but he drew a lot of fluid out. About 2oz. Yuch!! The surgeon told me to exercise and do whatever I feel like doing just to avoid heavy lifting for a few more weeks. He said that I should start swimming to improve my range of motion. 

So next stage will start soon. I'll keep u posted. I guess that it's fairly good news. It could have worse so I'm thankful.

:-)

I got home from the hospital yesterday.  Have just been too tired to keep up.  BS said no lymph node involvement and he only took out 2 nodes.  He also couldn't find any more cancer in breast tissue.  He thinks the original biopsy may have gotten it all.  Have appt on Monday to get full path report.  The surgery ended up being 12 hours long, hard on my family.  So far it's been easier than I imagined.  But I'm with everyone else in that these drains are a pain.

Hope everyone is healing well.

That's great news, Wynne! Glad to hear you are home and can get some rest.

Help - I just got my pathology report and don't know how to interpret it.  I had an an appointment with my PS and stopped in at my BS to make my follow-up appointment and they had just received the path report and I asked for a copy.  They said the BS would like to go over it with me, yes I understand, but of course I wanted to see it since I won't get in for an appointment until next week.  The nurse there and my PS said everything looked o.k. except for "surgical margin negative, 0.3 cm from closest anterosuperior margin".  Now I am totally freaking out that this is too close and they may need to go back in?  The nurse at the PS office said "well you never know, don't worry, they might be able to treat it with chemo or radiation", like it's nothing, and I don't want either.  Can someone please interpret? (please excuse typos)

RIGHT BREAST MASTECTOMY:

INVASIVE DUCTAL CARCINOMA, GRADE 1/3, 1.5 CM WITH ASSOCIATED LOW GRADE DUCTAL CARCINOMA IN SITU, CRIBRIFORM TYPE.

SURGICAL MARGIN NEGATIVE, 0.3 CM FROM CLOSEST ANTEROSUPERIOR MARGIN 

FIBROCYSTIC CHANGES WITH SMALL RADIAL SCARS AND SCLEROTIC FIBROADENOMA (INFERIOR ASPECT OF BREAST)

SENTINEL LYMPH NODE BIOPSIES:

NEGATIVE FOR MALIGNANCY 0/4

RIGHT BREAST ADDITIONAL SUPERIOR MARGIN:

NEGATIVE FOR MALIGNANCY

SKIN AND SUBCUTANEOUS TISSUE WITH FOCAL CHRONIC INFLAMMATION FIBROSIS AND FOREIGN BODY REACTION

RIGHT ADDITIONAL ADDITIONAL AXILLARY LYMPH NODES;  NEGATIVE FOR MALIGNANCY 0/3

HISTOLOGIC GRADE:  NOTTINGHAM SCORE - TOTAL 4

TUMOR FOCALITY ONLY SINGLE FOCUS IDENTIFIED IN MASTECTOMY OTHER SCLEROTIC LESIONS WERE SMALL RADIAL SCARS AND SCLEROTIC FIBROADENOMA WHICH WAS IN THE INFERIOR ASPECT OF THE BREAST. DUCTAL CARCINOMA IN SITU CRIBRIFORM TYPE MACROSCOPIC AND MICROSCOPIC EXTENT OF TUMOR SKIN, NIPPLE, SKELETAL MUSCLE NOT INVOLVED.  

MARGINS - INVASIVE CARCINOMA;  NEGATIVE, 0.3 CM FROM CLOSEST ANTEROSUPERIOR MARGIN IN THE MASTECTOMY SPECIMEN; HOWEVER, WITH ADDITIONALLY SUBMITTED BREAST SUPERIOR MARGIN, ALL FINAL MARGINS > 1 CM FROM TUMOR DCIS: NEGATIVE, 0.3 CM FROM CLOSEST ANTEROSUPERIOR MARGIN IN THE MASTECTOMY SPECIMEN HOWEVER WITH ADDITIONALLY SUBMITTED BREAST SUPERIOR MARGIN, ALL FINAL MARGINS > 1 CM FROM TUMOR.

SHOWING 0 MACROMETASTASES

Also,  I was diagnosed as multi-focal, is this saying "single focus".  Let me preface this by saying that I fully realize that none of you are my Dr., and I know that I need to have a consultation with her to go over this.  With that being said, does anyone know what is considered a "safe margin".  This board is full of ladies who have run the gambit of this disease with a vast amount of expertise, and any input that you could contribute would be most appreciated. 

Whew thanks SpecialK!  I wanted a lumpectomy but due to the fact that it was multi focal she said the area was too large and would have proven to be quite deforming.  But it appears this was not the case?  Now can I predict from his report if I will be needing chemo?

As of Monday I have been totally drain free, yay. I feel as though I have been released from prison.  Three weeks is a long time. It didn't hurt to have them pulled, just felt odd.  My pain came from the fact that my skin had grown over the stitch on the right side and the had to dig it out, yikes.

Wynne - great new, I am glad you are home.

Frostcat - I don't know what the limit is for margins, but I did have a 1mm margin and my doc said that was enough. Granted I had a bmx and my margin was used to determine nipple sparing, but I would guess a margin is the same in both cases. I don't understand a lot of pathology speak, but that last line seems promising for you, "ALL FINAL MARGINS >1CM FROM TUMOR."  It's so hard to wait, but we'll be waiting with you.  Hugs.

Juliecc, KLJ - I think the oncotype is the real determining factor for er+ cancers. My MO originally told me he would recommend four sessions of TC 3 weeks apart based on my pathology alone, but if I had a low oncotype he would not recommend chemo at all. My final pathology changed my grade to 3 and my oncotype came in super high, so after seeing MO yesterday his recommendation is a whole bunch of chemo.  This should reduce my 10 year risk of distant recurrence from 31% to <12%. If you have a low oncotype, I would definitely get a second opinion.

Linda505 and Football- I guess we'll be starting chemo in the next couple of weeks together.  It stinks but at least we're not alone. Football, it was recommended by my BO and MO that I get a port to protect my healthy veins.  I discussed my fear with the BS and he says he will put me under for the procedure and it should be no big deal.  Please oh please let it be no big deal. Linda505, have they discussed, port/no port with you?

Wishing a happy, gentle healing to all.

frostecat - I would refrain from discussing too much about treatment with your BS - I am sure that she has a wealth of experience ,but systemic treatment is not her area of specialty.  Your BS can certainly submit one of your surgical samples for Oncotype though and recommend some docs - I would say the sooner the better because it takes about two-three weeks for the result.  By the time you get those results maybe you will already have scheduled an appointment with a MO.

Question for those who had had ports - are there different types of ports?

Linda 505 and Blueberry...I will be joining you in the "port" of the month club...and not the fine wine kind!!!  I can't have mine until the ID MD releases me, which will be 2 weeks after I finish the IV antibiotic, which I still have 2 more weeks of. There is  also a 5 day pre-surgery prep due to the staph.  Arghh!!!!!

Unfortunately, since I had this staph infection, it has jacked up my whole summer schedule!!!  You would think by now, I would get a clue and just accept that I have no control over any of this !!!  As you can probably guess by my user name, my time at the lake is precious to me!!!  It is the place where I am renewed each summer. I had come to grips with the fact I probably won't be able to get in the lake water,  However, I can still ride in the boat, sit on the dock or deck and  soak up the sunshine, which greatly improves my disposition.  

Frostecat, my BS said 1 mm  is the acceptable margin.

I guess I am a bit shocked at how some of you ladies with stage I cancer, especially without node involvement are recommended to have chemo! My BS said to consult with a MO to see if I could benefit from Herceptin, due to my (5.5 mm) invasive tumor "positive" HER2. However, after doing some research, I am now realizing that that "positive" is really a very very marginally positive at the most, if not inconclusive.

With all the research I have done about the statistics of side effects/benefits, I have decided to forego that. I have Crohn's disease, and am extremely sensitive to all drugs, to the point where I even have trouble with Tylenol, and Ibuprofen is a big NO. 

We all have to do what seems right for us. For my own situation, I think it will be a lot more helpful in preventing possible recurrances to stick with the life style changes I have made over the past few months (no more alcohol - I used to drink a small glass of red wine with dinner, no more coffee - used to drink too much of that anyway, more exercise, replace those "bad" drinks with good ones such as green tea and organic cherry juice, eat gluten free, eat very little sugar, eat my daily dark leafy greens, and take the supplements I started taking shortly after my diagnosis in December. I will also continue my IV treatments with my naturopathic oncologist, which will also strengthen my body and immune system to ward off any cancer cells.

It is not an easy decision, one we all must make for ourselves, and with our family and loved ones in mind. 

My naturopathic oncologist also wants me to have a blood test done that measures tumor cells circulating in the blood. So hopefully that will be negative. She wants me to wait another month at least though.

I feel so much better today. For some reason yesterday was pretty tough, after getting my drain removed. Not sure if it was because the drain site was bleeding so much for several hours, or from some kind of "shock" my body went through from not having that drain inside of me anymore. In any case, my pain was worse afterwards yesterday, but much better when I woke up this morning. I didn't sleep all that well, in that I woke up every hour or two, and felt quite uncomfortable, but I slept for nearly 10 hours total last night! I feel like a new person today. 

I drove for the first time again today too, not very far, about 10-15 minutes each way, but I was able to take my son to his homeschool park day this morning, and it was really nice for both of us to see all of our friends (yeah, park day is fun for the mommies too!) again.

I also played my violin for about 5 minutes after lunch. It was a bit painful, especially shifting to higher positions, but I know now that I will be able to play again! I am starting physical therapy tomorrow morning, and will slowly, very slowly increase the time I play violin each day.

So glad I made it through the worst part of this journey. I am also so grateful for all the support I have gotten from all you wonderful ladies here! You're all amazing, caring, loving women, and you will always be in my thoughts and prayers. I will continue to be on here while I'm still healing. Hoping this March sisters board will somehow continue!

Edith

FootBallNut

I think many of us felt relief when we finally got results, even if they weren't the greatest news because at least then we had a plan. For me I needed to know what was next, even though it wasn't anything I wanted to do!!! But it sure helped to know the next step. Good luck to you!

I am almost 3 weeks post BMX. Surgeon was pleased with *his work* when he saw my incisions today.Only a very slight swelling & a tiny bit of fluid. Scars are thin & faint.

My Biopsy showed an extensive area of DCIS. They took 6 core samples and the pathology came back as 4cm area of DCIS with no invasion apparent. However, there was another 1 cm 'nodule' that was not biopsied,...why, I'm not sure. Apparently they were going to look at it in pathology after mastectomy. I meet with my BS on March 14th, so I am still unsure, given that one indeterminate nodule. I hope it was just a cyst, and the DCIS diagnosis was correct. 

My BRCA also came back as an 'unknown' mutation. Not a yes,... but not a no.  Huh?? I was told they treat it as a no, and look at it yearly to see if they know what is is then.

Also,.. my tissue expander was hurting me so much, I started to think I wouldn't be able to cope. I am not having my exchange until September. I just realized last night that it is 'nerves' that are being rubbed under my muscle. My PS prescribed Neurontin (Gabapentin) and thought it was just for severe pain post surgery. Last night I started taking it again, and I feel awesome today. YAY!!!