Dis Breast Cancer Survivors - GAGWTA!

[snappy]

Susan, my experience was that from the stereotactic needle biopsy, I knew I had 2 areas of DCIS, one with a small invasive component. The path report specified the exact size of the invasive component, not the size of the the DCIS tumors. There was no further in on the DCIS except that it was the comedo type.

The path report from the mastectomy reported that no residual invasive tumor could be found, no evidence of malignancy in the 16 nodes that were removed nor in the nipple. Two areas of DCIS were found next to the biopsy site. In this report since all of the DCIS was removed due to taking the breast, the size of the DCIS was listed.

I recieved the path report about a week after surgery. I did not receive the results of the ER/PR and HER 2 test until two weeks later. Not sure if these are routinely done on DCIS or not. Seems like it should be although my doc wanted me on Tamoxifen regardless since it reduces chance of a new cancer in the remaining breast.

Good luck at the doc's office.

I would not be rushed into surgery until you are ready. DCIS especially is not something that calls for immediate surgery. Talk to your doc about timing, do not let the nurse pressure you. Don't be bashful about asking, the doc won't know about your planned trip unless you tell her. In my case, my doc wanted to do the surgery within a month of diagnosis. He allowed me time to participate in DD's graduation festivities, and for a short trip which I ended up not going on.

I actually think a trip is a good thing to help relax and rejuvenate you prior to surgery. Even though a lumpectomy is less drastic surgery than a mastectomy, the waiting on test results, etc. are emotional and psychological stressors. IMHO, regardless of what type of surgery and treatment you have, what stage you BC is, etc, this is a difficult journey, and you need all the TLC you can get. There is a lot of TLC (as well as pixie dust) at WDW, especially when you are sharing the trip with grandkids.

Please post after your appointment. Good luck. We care.

 

[MerryPoppins]

Not sure I'll be much help here, Susan. I had DCIS and I delayed my surgery for a few days and my surgeon had no problem with that. I opted to do mastectomy instead of a breast conservation surgery, so I can't tell you how you'd feel afterwards, but I think I'd lean towards waiting until after my trip.

What should you ask? You might want to bring a tape recorder. You'll get lots of info really fast and sometimes I've heard it helps to go back and listen to what the doc had to say again.

Ask what surgery is recommended. How might treatment affect future risks and follow-up treatment? "There are often indirect consequences of treatment decisions. For example, breast conservation therapy achieves, as its goal, treatment of the breast cancer along with preservation of the breast. This is clearly a highly desirable objective. However, in doing so, it leaves the possibility that cancer may recur in that breast. The risk is small, but is definitely there. Most of the time, the recurrence will be recognized and the new tumor treated early, but not always."

How extensive do they believe your DCIS is? As the cells multiply they spread through the ducts of your breast. What does the doc believe your chances of recurrence will be from cells that they "miss". (This is the danger of DCIS. That cells left behind could become invasive.)

How long will you probably be in the hospital and what will your recovery be like?

Does the surgeon think you'll require radiation and or chemo? When will you begin additional treatments if necessary?

Will they do a sentinal node biopsy? This tests the lymph node/nodes that correspond to the part of your breast that is involved to be sure that the cancer is not invasive.

I recommend getting a second opinion. It didn't change my mind about what I should do, but it made me feel better about my decision.

My doctor is with the hospitals breast care center, so she also offered use of a breast cancer lending library for her patients. My DH took advantage of those books.

Hope this helps. A good doctor will cover most of these things without you asking, but having a list in your head might help you realize if you've gotten all the info you need. I have to admit that some of what my doc said went right over my head in the beginning. I was glad I had DH with me to tell me again what she had said. I guess I was still in a sort of shock.

 

[MNSusan]

Thanks for your insight! Its soooo valuable to have that in my back pocket.

I really liked the surgeon. For one thing, she's been to WDW and stayed at AKL which we love. I have to pick my surgeon by her love of Disney, you know.

She gave me a copy of the pathology report. The tumor is very small, only 3-4mm. Its Stage 0, Grade 2, DCIS, cribriform type with comedo. Based on that, she recommends a lumpectomy followed by radiation. The er/pr, HER won't be done until surgery with results available a few days after that. Then I'll know about Tamoxifen.

She had no problem waiting until early December to do the surgery (its scheduled for Dec 7). Between our two trips to WDW and Thanksgiving, it would've been hard to fit it in the cracks. Of course, if it would significantly change my outcome, I would've done it sooner.

She thinks there's no reason to do the sentinal node biopsy because this is so early and so small. Because of that, I won't need general anesthesia and the procedure can be done in the Outpatient Surgery Center instead of the hospital.

In terms of recovery, she said it'll be like having a really big core biopsy. The same kind of discomfort, etc. She'll want me to wear a sports bra for a few weeks, but after a few days I can be back to normal activity.

All in all it was a very good appointment and I continue to feel like I dodged a bullet on this one.

Now I can get back to obsessing about whether I need to change any of the ADRs for our trip. LOL

 

[MerryPoppins]

Susan, sounds really good. I'm so glad that you are sounding so positive. And a surgeon who loves Disney? Perfect match. Happy trip planning!

 

[laurabelle]

Ann- I'm just doing a long weekend...12/9-12. I got a Ding and an email code...still have days left on my hoppers and bought MVMCP - whooo hooo! Right now I have 2 nights booked at CSR (1st time there) and 1 night at AKL (hoping to book at least one more night there, waiting for something to open up) It's a surprise trip for my girls and celebrating my cancerversary!

Susan- It sounds like you got alot of good info already! Have you looked at www.breastcancer.org ? It's good that you got a copy of your path. report. It sounds like a good plan. I'm glad you have a trip to distract you in the meantime...

 

[laurabelle]

Please send your good wishes and prayers to Lisa (Tiger Fan)
http://www.disboards.com/showthread.php?t=951608

 

[JennyMominRI]

~~~***GAGWTA sistas***~~~
We're in for gorgeous weather here! I hope everyone else is too!

Lessa- My hubby does 1 1/2hr commute by train too, from north of Baltimore to D.C. He doesn't look forward to winter either...

Side effects- I am blessed to be at a university hospital that loves to study everything! I did a clinical trial for chemo and my implants, I was followed around by a pharmacy study because none of the anti-nausea meds worked for me during A/C, I've done a bunch of other studies...I can't even remember how many...alot. A couple of months ago, a nurse was at our support group meeting and asked how many had done a clinical trial or study and I was the only one to raise my hand out of 20+. I was shocked! Apparently the majority of docs don't even ask... This is how things like side effects get documented and if it's not documented, they won't say it's a side effect. Gosh, I think if the docs would just ask, more people would do it. I've even been paid a few times for it. Mostly I do it- for myself, to help my kids, others, because I want to give them my $.02.
So, I bet the Arimidex is causing the problems, it just hasn't been documented from a study yet...

Did you try Zofran?..Different disease ,I know,but it's the only thing that ever works for me.

 

[JennyMominRI]

I just want to say,that,i know I don't really post.But I read.I really feel that I can't understand what you go through.. My diease does not effect me on a day to day basis.. Its just as horrible,but it's slow acting.. I just get so much inspiration from reading your posts

 

[laurabelle]

Yep. Zofran was the newest, bestest anti nausea med out there when I was dxed almost 7 yrs ago. Unbelievably it didn't work for me. I would premed, ativan, zofran, decadron (tried kytril and compazine too) get chemo and end up back in the hospital the next day with I.V. everything all day and vomit in the car on the way home. They never did figure me out, but they told me a new drug was coming (it came out a couple of years ago...Emend) and I've heard good things about it.

 

[JennyMominRI]

Yep. Zofran was the newest, bestest anti nausea med out there when I was dxed almost 7 yrs ago. Unbelievably it didn't work for me. I would premed, ativan, zofran, decadron (tried kytril and compazine too) get chemo and end up back in the hospital the next day with I.V. everything all day and vomit in the car on the way home. They never did figure me out, but they told me a new drug was coming (it came out a couple of years ago...Emend) and I've heard good things about it.

That sucks..It the only thing that ever worked for me,and only some of the time.. My prescription calls for 60 a month.and they used to give me 60..Now I get 15 a month

 

[laurabelle]

I just want to say,that,i know I don't really post.But I read.I really feel that I can't understand what you go through.. My diease does not effect me on a day to day basis.. Its just as horrible,but it's slow acting.. I just get so much inspiration from reading your posts

Jenny- Hey, it goes both ways! You're an inspiration to me too! Did they end up switching your meds?

 

[laurabelle]

That sucks..It the only thing that ever worked for me,and only some of the time.. My prescription calls for 60 a month.and they used to give me 60..Now I get 15 a month

I remember you saying they might do that to you! Unbelievable! How are you managing???

 

[JennyMominRI]

Jenny- Hey, it goes both ways! You're an inspiration to me too! Did they end up switching your meds?

NOt Yet..They did a seconf t-cell count,because sometimes they screw up..Or if you are fighting an illness it can throw off the count..I have an appointment next Wednesday with the NP..If that shows similar results they will schedile me for the doc,who can change my meds...I really hope they have to change them.I'm tired of feeling sock 2 times a day

 

[laurabelle]

NOt Yet..They did a seconf t-cell count,because sometimes they screw up..Or if you are fighting an illness it can throw off the count..I have an appointment next Wednesday with the NP..If that shows similar results they will schedile me for the doc,who can change my meds...I really hope they have to change them.I'm tired of feeling sock 2 times a day

Praying they will and it helps...
I need to do more reading about t-cells. I also have post-cancer ulcerative colitis, an auto-immune disease where my screwed up immune system attacks my body. It got so bad that I've been put on an immune suppressant. They talk alot about t-cells, but I haven't read too much yet, one step at a time...or I get overwhelmed.

 

[JennyMominRI]

Praying they will and it helps...
I need to do more reading about t-cells. I also have post-cancer ulcerative colitis, an auto-immune disease where my screwed up immune system attacks my body. It got so bad that I've been put on an immune suppressant. They talk alot about t-cells, but I haven't read too much yet, one step at a time...or I get overwhelmed.

T-cells are pretty basic..they are the cells that help recognize disease..They are part of the White bood cells.. Normally something like 30-60 percent of WBC's are tcells.. I have had percentages as low as 7%..That means that my WBC"s don't do a good job of recognizing and fighting off disease

 

[Hollyann]

Hi everyone! I'm SO sorry I've not posted in a while...I've got quite a bit of reading to do.

I've been out of circulation for a while - one of my sister's was violently murdered and the family has been struggling to cope. My heart aches for my mother... Unfortunately, there are no leads.

On top of that horrible event, I got the flu as bad as I've ever had it. I have 2 prescriptions that (I hope) will get rid of it - and I finally got my voice back after a week!

I'm doing well, biopsy healing well and feeling grateful for such a good diagnosis and such wonderful GAGWTA sisters to share my time with.

I have a friend who has a surgical visit next week and it's looking like she may have to have a masectomy - the first thing I thought of was all of you and I wanted to make sure you knew that you are all in my thoughts and prayers.

Hope everyone is having a good day - I'll keep checking in!
Ann

 

[JennyMominRI]

I remember you saying they might do that to you! Unbelievable! How are you managing???

Well,On the bad side...I'm paying homage to the porcelain G-d more often..On the bright side,I can eat a lot more

 

[Pea-n-Me]

GAGWTA!

I miss being on vacation! Hi Jenny

Surgery

Just wanted to chime in here about surgical decision-making. I always find it interesting how unique each case of BC is and how and why people made the decisions they did. Here's my story, I apologize it's so long. (Susan, this is not necessarily for you, but I know a lot of others read this and thought maybe it might be helpful for someone now or down the road).

My tumor was 2.1cm, found by me as a lump (mammogram 11 months earlier was completely normal, many have reviewed it in hindsight). Needle core revealed Invasive Ductal Carcinoma. Chemo recommended. Bilateral MRIs revealed no other disease in either breast.

I saw two surgeons, a truly great general surgeon who I knew and a Breast Surgeon (who has extra training in matters of the breast and all facets of breast surgery). Despite my familiarity with the general surgeon I chose the breast surgeon (whose personality was not anywhere as good as the general surgeon's - there were times I'd wondered if I should have chosen the latter based on that alone and a few times contemplated changing back to him later on, but stuck it out with the breast surgeon. It's not always an easy decision but I tried to go with my gut and my gut told me to stay with the breast surgeon). (And don't forget, I also have to work with these people, LOL. )

I had my choice between mastectomy and lumpectomy (the official surgical term is partial mastectomy). If I had mastectomy I would have to choose between a TRAM flap which could be done immediately or implants which would be done later since radiation was also recommended. I could also choose nothing and just take the breast off. I liked the idea of having a tummy tuck with the TRAM flap, but I was warned it was a very difficult surgery (abdominal and chest) and recovery, and going right into chemo after that as well as having two 6 year olds and a demanding job made me think long and hard about it. The implant was something I considered but knew all well there would more than likely be problems with that which both surgeons had warned me about. (Not funny, but surgeon mentioned a patient he had who showed up at the office after a weekend of skiiing with two flattened implants after a fall. Um, I dunno. ).

I also thought about the implications of having no breast. When I thought about the lumpectomy it seemed the easiest way to go with the most likelihood of relative normalcy afterward.

However, I wanted reassurances that it was safe to do so from a cancer standpoint. Here's how it was explained to me. With a mastectomy I would have a 2.5% chance of recurrence of the cancer in the scar tissue of the breast each year, and with the lumpectomy I would have a 5% chance of recurrence in the breast every year (with a 1% chance of getting cancer in the other breast per year). Yes, having a mastectomy does not guarantee you will not get the cancer back. So I had to decide how much that difference of 2.5% made to me along with all the other implications. They also told me that if I did have a recurrence with lumpectomy, then we could go in and do a mastectomy, which would obviously not be an option if I had no breast. Along with lumpectomy we would monitor me very carefully with frequent clinical exams (by the surgeon, oncologist and radiation oncologist at different intervals), yearly mammograms and yearly MRIs alternating, so I would have some type of imaging every 6 months and presumably catch any recurrence very early. Hmmm.

I, like many, presumed that having a mastectomy would prolong my chances of survival, telling my doctors my children were young and needed their mother, etc... It was sobering when they informed me that the type of surgery I chose at this point would not change my survival odds. My survival depended upon whether I got a distant metastasis, and the risk of that comes from the invasive component to my cancer which any surgical options would not change. I didn't want to believe that so I researched it myself and was devastated to find it was true. http://www.breastcancer.org/research_surgery_101702.html


At the same time in talking to my oncologist and asking her opinion about surgery, she put my mammogram up to the light and put her thumb over my tumor, covering it completely. She said, "this is your tumor, the rest is all healthy breast tissue - why would you want to take that off if you don't need to"? So there you have it, I chose lumpectomy, and true to their word, they are watching me like hawks! In the back of my mind sits the worry about recurrence and metastasis, but a local recurrence is not likely to kill me and we will (hopefully) catch it very early on if one shows up (wish I had the tamoxifin option ). I'd be worried about a metastasis even if I had a mastectomy based on the fact that my cancer was aggresssive, invasive, ER/PR negative, and one of my nodes was positive. Phew.

So lots to think about when you're faced with this decision, and again, every case is unique. It's never easy to decide what to do. I think you have to go with your gut and what your intsincts tell you, and do what's comfortable for you. Good luck to anyone who is faced with these difficult choices.

 

[Hollyann]

Wow! Pea-n-Me, that was a very thoughtful, informative post. I also wanted to say that your halloween pics were adorable!

Lessa - I hope your feet are feeling better. I never had a commute quite like yours before, but I've had 70 minutes in a car...I can imagine how draining it can bel.

Merry Poppins - I hope your DH gets the job. Cobra can be an expensive option....I hope it all works out.

Cruise04 - so glad you're happy with your doctor. Hope all goes well with you...

JennymominRI - I hope they eventually find a med that works for your nausea.

Mickeymost - I hope your implant is doing better. I can only imagine your frustration - :hugs:

LauraBelle - I just wanted to say "hi"! You always have such uplifting, awesome posts!

I only went about 7-8 pages back - but I'm thinking of all of you! Happy Friday!

 

[Pea-n-Me]

Hollyann, I almost just fell off my chair when I read your post. I can't imagine what you've been through and the anguish you must live with every day. Prayers to you, your family and your sister.