Something I Just Found Out

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mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/3/2009 1:41 PM (GMT -7)   
Just got a call from a scheduling secretary at Lankenau Hospital for an MRI, bone scan, chest xray, and a consult with a cardiologist, plastic surgeon and oncologist. I told her I already had an onco, Jennifer Sabol, that's when she told me Dr Sabol was a breast surgeon not an onco.
 
The onco who is taking my case is Marisa Weiss who is the president & founder of breastcancer.org
 
I'm delighted to have two very good woman doctors.
 
I called my insurance to see if there was a co-payment for my 30 radiation treatments and there is none. So glad about that, 900.00 saved.
 
One thing I don't know is if I will have chemo after radiation.
I have a HER2/NEU (IDC) ER/PR+ tumor 1st stage 2cm
Having a lumpectomy and any experience information would be greatly appreciated.
 
I am so in the dark about what to expect and am terrified about maybe having to take Herceptin infusions.
Still have fatigue from Lyme, but less and less everyday. Hate the thought of going through that again.
 
Jane
 
 
 
 
 

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 9/3/2009 3:29 PM (GMT -7)   
Hi, Jane. I have to tell you, there is nothing as reassuring as knowing that you are in good hands. I kind of "lucked into" very good doctors. We had just moved to Cincinnati, and my first visit to our family doctor was to have him check a lump a had found in my breast.

I think you said that you are having a node biopsy with your lumpectomy, and that may influence the chemo decision, as may the HER2/NEU status. Staging really depends on three things: tumor, node status, and metastatic findings (hence, the bone scans, etc...) Breast cancer has certain places it likes to home in on-- lungs, liver, bones are the top three. Herceptin is considered a chemotherapy, by the way, so you do know that you will be having one type of chemo.

Some oncologists recommend chemo for all breast cancers. The thinking is that micrometastisis cannot be ruled out, even with no nodes and clean scans. In other words, a few cells may have gotten away, settled somewhere, say on the hip bone, and if they aren't stopped from growing and dividing, then sooner or later, you will have evidence of metastatic disease. Other oncologists use the "wait and see" approach, assuming that if the tumor is small, the nodes are clean, and there is no evidence of metastis, then either mastectomy or lumpectomy with radiation is adequate.

Personally, I'm in favor of overkill from the get-go! However, I have two cousins who were diagnosed, and they both chose the "wait and see" approach. One had a double mastectomy with reconstruction. The other chose lumpectomy with radiation (and then decided to take Herceptin, as she was HER2/NEU positive.)

Age can also be a factor in the chemo decision, and honestly, I can't remember if you told us your age or not... sorry!

With radiation, I think you can expect fatigue... sorry again! As is true with chemo.

Again, I haven't had Herceptin, so I can't tell you what to expect. I've been NED for almost 15 years now, and Herceptin was in trials back when I was diagnosed... never even had my status checked, to my knowledge.

I'm sure your doctors will give you all the information you need to make an informed decision. It really sounds like you are in great hands!

Take care.

Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/3/2009 4:54 PM (GMT -7)   
Hi Bev,

I have no idea if I'm to have chemo, but do know I will have radiation. We talked for almost two hours and I don't remember what was said about it. I even thought of refusing radiation and/or chemo, but I know I'll do it, it was just a bit of denial. Yes I am having a node biopsy too and I think I mentioned the surgeon said she feels I have a less than a 2% of having bone cancer, but not sure about lymph node involvement.

I am so happy about having excellent doctors who are so dedicated to to treating breast cancer, but why oh why does the cure be so bad.
I'm so glad you have the same feelings about your docs, it's half the cure.

Really Bev, overkill, it's not easy to say go for it when you know how lousy your going to feel. You are so brave and your right to go all the way and I'm very sincere when I say this to you because
end stage cancer is a terrible thing to endure.

Was wondering too about follow up like a year or so later...what do they do just mammograms and blood tests ??

How are your cousins doing?

Jane

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 9/3/2009 5:17 PM (GMT -7)   
I'll be honest... I really didn't have a choice about chemo, so it's easy to be brave when you don't have a choice! But the fear of chemo is often worse than the chemo, I think. Yeah, hair falls out, but it grows back. Yeah, you feel kind of lousy, but 6 months of "kind of lousy" is worth every minute when you get years of life in exchange. And when it's all said and done, there's no guarantee that we still won't be facing end-stage cancer at some point.

My onc is very diligent about follow-ups. I see her every 4 months. Bloodwork and physical exam on those visits. I have chest CT and mammogram annually. Bone scan annually for awhile, now every couple of years. Some people think that is overkill as well, but if it makes her feel better, it makes me feel better.

Cousins are doing well! Think one has about 3 or 4 years and the other is about a year out from dx now. Thanks for asking! Meant to tell you both are doing well earlier.

Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/3/2009 6:08 PM (GMT -7)   
What's got me is there is so much to this disease, it's just not surgery and your done with it, it's never ending.

I had my gall bladder out about 25 years ago, no problem at all and I didn't even go back for my six week check up, I know your supposed to, but I just didn't see any reason.

Cancer is another story and you know if I hadn't have lost 80 pounds in the last year I'm sure I wouldn't have gone for a mammogram for heaven knows how long one thing I was certain of was not me, I did not and never would have cancer....guess again...I noticed a large plum size lump in my lower left breast and I do mean large and it was only because of the weight loss that I felt it and was sure it was just fibrous tissue.

I asked the doctor how could the mass be so big and the cancer so small (2 cm) and she said it was like The Princess And The Pea if you know that fairy tale.

Bev, did you get a second opinion before you did anything. I'm being told that I should, but then again the cancer is easy to see on the mammogram and the biopsy came back positive it's not like anyone is taking a guess.
The doctor knew it was cancer soon as she saw the mammogram.

Thanks for the information on follow ups and I don't think it's overkill at all, it's being diligent.

Easy for me to say no rads, no chemo, but it's idle talk when I know I will do as asked.

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 9/4/2009 7:01 AM (GMT -7)   

Hi Jane-

I'll chime in too here. Regarding the second opinion...YES! GO! But, it would be better to get all the staging tests done first (MRI, Chest Xray, etc) and then take the armload of information to the clinic for a second opinion. They will need to know the status of all of those tests to render an opinion.

In the "old" days, tumor size smaller than 1 cm & negative nodes usually meant no chemo, but rads and surgery. Type of surgery was based on the findings with vascular invasion, among others. I am not sure what the current thinking is on when to do chemo or not. There are new tests now that can help determine the woman's chance of recurrance which can influence the chemo decision too. And Herceptin is probably a guarantee for you, which is a good thing (no hair loss from it!).

I was lucky and had an easy time from chemo....worked full time but took a couple days off each of 4 chemo cycles. I did 6 weeks of rads, went in the morning before work, minimal fatigue and no burns. Everyone has a very different experience, but I am telling you mine to offer encouragement that it may not be as bad as you fear. Fear of chemo, as Bev said, is usually worse than the chemo itself.

Remember to get that tape recorder to your sessions with the doctors, there is just so much to learn and absorb, and it is impossible even under the best circumstances to learn it all in one sitting.

And yes, BC becomes a chronic condition. Even being NED for years and years, there is always some test or something to monitor. The next 6 months- 1 year will be active treatment and then it goes into a surveillance mode...and we've seen that doctors all have a different preference on what they think is best....so when you get to that point, my advice is to go with what is comfortable for you. If your doctor is not a good fit, it is ok to find a new one.

Lori


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