Mammo,Sono,Breast MRI - neg Positive Nodes

I have been diagnosed with breast cancer, even though all tests above where neg. Positive nodes, (Estr + receptor) no ovaries or uterus. Not sure what type. ALways had yearly mammos, ate right, washed the barbecue grill off before grilling, never smoked, rare glass of wine. Weight normal, probably could have exercised. more. Node desection will be done Tuesday for staging.
So afraid of chemo, radiation and probably bilateral mastectomies, (how else can you monitor it's return, before it spread to other organs?)
Has anyone else had any experience with this type of presentation of breast cancer?
I need some reassurance.

 

On 11/28/2008 Bonniee wrote:

I have been diagnosed with breast cancer, even though all tests above where neg. Positive nodes, (Estr + receptor) no ovaries or uterus. Not sure what type. ALways had yearly mammos, ate right, washed the barbecue grill off before grilling, never smoked, rare glass of wine. Weight normal, probably could have exercised. more. Node desection will be done Tuesday for staging.
So afraid of chemo, radiation and probably bilateral mastectomies, (how else can you monitor it's return, before it spread to other organs?)
Has anyone else had any experience with this type of presentation of breast cancer?
I need some reassurance.

Hi, Bonniee

I did not have neg mammo, sono or MRI.  They were all positive. So, that part of my experience is different from yours.  I did have a node desection and lumpectomy on the right side, however.  The first surgery was July 7, 2008 and I had a second July 28, 2008 to remove more tissue from the tumor area.  Since then I have undergone chemo and will over halfway through that.  Next will be radiation. 

But though our diagonsis may differ I can tell you about my experiences so far and maybe a bit of what to expect.  First, try not to let the fear take over.  Learn as much as you can about breast cancer, the treatments, the side effects... all of it.  The internet is a great place to go for this, but pick your sites carefully.  There are some that do not have as much behind them as they should.  Try the NCI (National Cancer Institute) and Chemocare for starters. Do just what you are doing now and talk to other cancer patients and survivors.  They have a wealth of information that you may not get from your doctors because they are or have lived the experience.  REMEMBER Knowledge Is Power.

After your surgery be sure to get the written pathology report.  It may be confusing.  There is alot of medical terminology that will likely be used. But go over it with your surgeon line by line.  Take the time to take notes on what your surgeon says while you are going over it with him/her.  Have someone else there with you for a second set of ears.  If you have questions that you think of later (and you probably will) be sure to call your surgeon or ask at your next appointment.  AGAIN Knowledge Is Power!

The pathology report will answer many questions for you and for your doctors.  It will tell them the staging, type and grade of your cancer.  All these things will define the next part of your treatment.  The pathology should also answer many of your questions about whether or not your cancer has spread.

OK.  If any of your nodes are positive, your next course of action may be chemo.  I'm gonna be honest, the first round of chemo I had was tough.  It was called AC (Doxorubicin and Cytoxan). I had 4 treatments at 3week intervals. The nausea was not insufferable because of great anti-nassea drugs, but it was not much fun.  I lost all my hair except eyelashes and brows.  Basically, I felt like I had a really bad case of the flu for about a week after each treatment.  Then I would start to feel better and regain some appetite over the next couple of days.  By the 10th day after treatment I felt pretty good.  Then we would do it all over again. 

Now the AC treatments are behind me and I am continuing my chemo with Taxol, 12 treatments over 12 weeks.  I have had 3 treatments of this. So far these treatments have been much easier than the AC. I have had no nausea.  In fact I have gained back 5 pounds of the 20 or so I lost with the AC!  I get tired easier, but so far I am able to deal with that.  No other troubling side effects to this point though.

If all goes well, I should complete chemo Jan 30 and start 6-weeks of radiation in mid March. 

Bonniee, I don't have to tell you that this is a very frightening time.  You are likely feeling a landslide of emotions right now.  I sure did and continue to feel them.  This cancer has tried to invade my whole life!  But one of the things I decided early on was that it was not going to get ALL my life.  I was going to have some control, whenever and where ever I could.  I decided to stay as physically fit as I could through this whole thing. (Not something I was too terribly inclined to do before).  I also decided that the things that I could do, I would do.  For example,I love to work around the garden and outdoors.  We farm so that is really a big part of our lives. There are days when I am lucky to feel like brushing my teeth.  But there are also days when I do have more energy and I can do some of the things I have always loved to do.  Three weeks ago we vaccinated cattle which is a big job here.  I was right there in the thick of it. 

You can do this, Bonniee.  If I can, anyone can. I still get scared, especially late at night when the house is quiet and it is just me and my thoughts.  I try to talk to God (even though He may get awfully tired of my rattling) until I go to sleep.  I also keep a small journal.  Writing in that, if only a few words a day, seems to help.  I write down any thing about my physical feelings but also I write about my emotions, fears and concerns.  Then I close the book and get on with things. It helps.

Please post and let me know how your surgery goes.  I will be thinking of you until then.

God bless,

Jodysboys

 

 

 

Dear Jodysboys, Thank you so much for sharing your experiences and for your kind recommendations. You are a tropper! I admire you. I have to admit that even looking up things about cancer and chemo, radiation effects all are just to frightening for me right now. I know knowledge is power, but sometimes I don't even want it. I am just trying to take one baby step at a time. I am new to this site, but plan to keep you posted. You took a lot of time on your E-mail and I want you to know that I appreciate every word and second that you spent. I have copied it and I will keep it close at hand. Thanks again, Jodysboys May God Bless

Dear Bonniee,

Baby steps are great!  They still move you forward!

I was thinking of you last evening and remembered something else.  Are they going to give you are port if you have to have chemo?  I have one and it has been a wonderful thing throughout my chemo treatments. It has made receiving the treatments SO much easier that an IV and basically pain free.

My thoughts to you-

Jodysboys

 

Dear Jodysboys, I had the axillary disection yesterday. I will find out next week about the number of nodes involved. They always have to stick me many times before they can get a vein. Do you have a PIC line? Where is it? Does that mean they can draw all the blood and given you the chemo in that same vein all the time? Doesn't that burn that same vein out? How long can the line stay in before it has to be changed? Do they put it in surgery, or in the office? Sounds like a dream if it will last the entire length of chemo! I think about you too. You sound amazing, and so strong! Bonnie

Hello, Bonnie!

Glad to hear from you.  And I am glad to here the disection is behind you.  Now comes the waiting, right? 

I do not have a PIC line.  What I have what is called an implantable port.  They use it to give me the chemo meds, pre-meds and so on..really pretty much any meds that they need to give me through an IV.  They can and do use my port to draw blood, as well.  I think it is the most wonderful invention ever.  One nearly painless stick and they can do my blood test and then using the same needle give me my pe-meds and then chemo!

My port is just under the skin just below my left collar bone. It is small, a 3/4-inch disc-shaped device.  There is a small line that runs from my port to a vein under my collarbone. My collarbone actually protects the line. You can not see this line, as it is internal.  It was put in surgically and was pretty much pain-free from the beginning.  They put it in when they did my second surgery prior to starting chemo.  The port can stay in as long as I need it to as long as there is no infections or it becomes unusable.  They tell me this very rarely happens.  I just have to have it flushed (again, a simple, painless procedure) about once a month when it is not being used on a regular basis.

Tomorrow I go for another chemo treatment.  I have a great oncology nurse.  I will ask her about PICs and try to get all your questions answered.  I have seen many of the other patients taking chemo at the  facility I go to, with what I think are PICs.  So, Tammy, our nurse will know the answers.  I will post to you as soon as I get back tomorrow evening and let you know what I find out.

Guess what Bonniee, you are taking those baby steps and they are getting bigger!  I am cheering myself silly for you!

Stay busy and stay positive.  I'll talk to you again tomorrow.

jodysboys

Jodysboys, I hope everything went well after your chemo treatment. Just think, you will soon be done! I think I will be taking ADRIAMYCIN AND CYTOXIN FIRST, THEN TAXOTERE with steriods before the treatment. What did they give you for nausea? They gave me Zofran 8mg in the hospital after my surgery. No vomiting, but such intense nausea I could bearly drink. Then I heard that if you don't drink at least 3 quarts of fluids in a 24 hour period with the chemo your bladder may start to bleed. The whole ordeal seems so torturous to me. Were you in bed the entire days after treatment? Did you need someone to help you to the bathroom, bathe and fix food for you? How in the world to you get through this? Thank so much for your time and info. Bonnie

Bonnie,

One thing you need to remember is that everyone reacts differently to the various chemos.  I had no side effects with my A/C treatments or with my Taxotere treatments. I do consider myself lucky.  My hubby and I would go out to breakfast or lunch after I finished my treatments.  The only thing I can remember botherine me was the fact that I would want to take a nap some afternoons. I had chemo from Sept 2007 through Feb 2008.

I had a right mastectomy this April, then had almost 7 weeks of radiation therapy. I only had some minor burning in the area above my collarbone. We had late afternoon or early evening appointments for radiation, so we usually went out to eat supper after my treatments.  Again, I consider myself lucky.

The main problems I've had are from the Arimidex pill which I've been taking since March 2008.  I believe I've had every side effect I've ever seen listed by anyone at one time or another.  However, in spite of the joint pain, sleeplessness, nausea, vomiting and other side effects from time to time, as long as it works I will continue taking it.

Good luck with your treatment.  Keep laughing and thinking positive thoughts. 

Claudia

Hi Claudia, It is so amazing to hear from someone without side effects from the chemo. You mean there is hope? You have really inspired me this afternoon, when I was at a low point. Thank you, Thank you , Thank you!!! I know that everyone reacts differently, but that is so good to hear. I was told you could not go out to eat due to the low white blood cell count and possible infection from food with baccteria - no salads, etc. I felt like I should plan to be on "shut down" only eating cooked vegetables through the nausea and vomiting. I am glad you are doing so well! Keep me posted! Love and Blessings, Sandi

Hi Claudia, It is so amazing to hear from someone without side effects from the chemo. You mean there is hope? You have really inspired me this afternoon, when I was at a low point. Thank you, Thank you , Thank you!!! I know that everyone reacts differently, but that is so good to hear. I was told you could not go out to eat due to the low white blood cell count and possible infection from food with baccteria - no salads, etc. I felt like I should plan to be on "shut down" only eating cooked vegetables through the nausea and vomiting. I am glad you are doing so well! Keep me posted! Love and Blessings, Bonnie