Confused on Being a Fighter!

Erinsoule

Hello Everyone! I am newly diagnosed, and although my diagnosis came 4 days after my Aunt passed away from breast cancer, my sadness and fear wasn't what got the best of me, it was the confusion as to what I'm supposed to do next. I went through several mammograms in a short 4 months, then had two different biopsies to confirm the DX, then handed a mini briefcase of papers, support groups, surgeons to choose, treatments available, bills, and even a few "Donate here's", so I thought I was on my way to becoming a fighter...a CANCER SURVIVOR! But today brings me sitting here without a surgery date, without any treatment yet, no Dr's appointments on the calendar for weeks, even months and I cannot help to ask, am I OK? Is it growing while I sit here and do nothing? Just started getting new pains in the breast with cancer so im scared, nervous and don't fill much like a fighter  I have the mind set, that I WILL be a fighter, I WILL be strong and I WILL stay positive, but where do you start? How do you start, when it feels as though Dr's arent moving quickly, my life at home hasnt changed a bit, Im still struggling with teenagers issues, house cleaning, work and whatever else life throws at me. The last appointment with the general surgeon determined i would be having a double mastectomy with reconstruction, but thats where it stopped, havent seen a plastic surgeon yet, nothing! Am I being too impatient? Should I worry? Or where do i start on this mission to SURVIVE? I love this site, forum and all of you for being a much needed ear

Nel138281

Erin,

What is your dx, what type of bc do you have?   That will typically dictate the type and timing of treatment.  If you are feeling a change in symptom, go back to your doc.   You will have to advocate for what you think is best for you and how soon you think you need to be moving forward.  Did the docs tell you why everything is not happening for weeks or months?   If not ask why, if you don't like the answer, get a second opinion.    I would also suggest you see a breast surgeon.  I was initially dx by a general surgeon, and am very grateful for his knowledge.  But I did transfer all my care to a cancer center and a breast surgeon.  My surgery site is amazing, she did a great job.  Did you determine a bmx and reconstruction or what that the surgeon's recommendation and why.  depending on your dx  there may be other options available to you.   And many of us go without reconstruction for various reasons.  That is an option as well.  Some surgeon's just can't believe that a woman would not want reconstruction.  Ask lots of questions, this is your body and your dx. Get the care and treatment you are entitiled to. 

And yes things on the homefront will probably remain much the same. I have teens as well and their ability to tolerate the emotions that come with a parent having cancer vary by child and can vary by the hour.  Take care of yourself and they will be fine.

Keep us all posted.  There is much caring and support here.

Nel

Erinsoule

Hi Nel, very nice to meet you  I have Invasive Ductal Carcinoma in the right breast, and some DCIS also. They found a 14 or 15 mm mass, in one area, that was diagnosed as the cancer, then had a biopsy on another area in same breast that looked like a "string of pearls" as they called it, which turned out to be Atypical (a benign area with a higher risk of developing into cancer). I dont know stage yet, but the surgeon (who is actually a breast surgeon) said it appears to be stage 1, although she will know more accurate after surgery and specimen is looked at, she also said both areas need to be removed, could have been done with lumpectomy, but she didnt feel confident that it would not return, especilly with my family history (im 4th generation on maternal side) waiting for the HER 2 test on June 6th. Im with Cancer care Associates, and although I have been happy with my team, especially my Nurse Navigator, I just feel as though I am supposed to be doing more, acting on all this more quickly. My grade on the path report said grade II of III, and is hormone receptive. My lymph nodes were clear from both biopsies, and the surgeon will check them or biopsy them during surgery as well. I asked if I should be concerned at the wait i am experiencing and they just keep assuring me, Im moving along perfectly and timely...just doesnt feel like that, maybe its because im the one with cancer, so to me, its an emergency. Can I ask? How was your recovery? I have myself so worked up over being in pain afterward, haha...I know you would think I have more concerns, but i just hate pain, and Im so squemish, im a train wreck when it comes to medivcal procedures, I can barely tolerate an IV!

dorthi

Erinsoule you sound EXACTLY like me in so many ways! It's crazy to think I'm not the only one stressing about how long it's taking and also a complete wreck over the recovery!! I'm terrified of the surgery and pain afterwards, as I am also a complete wimp when it comes pain and medical procedures. Keep us posted on how things are going. With the help of so many wonderful people on here hopefully it will help with the stress of it all. Take 

Redheaded1

Erin, Nel is right on the money with what she told you. 

As far as timing goes--I too had small tumor, but I was diagnosed day after a core biopsy was performed.  I saw a surgeon within 2 weeks, who insisted I see a Medical Oncologist which was another week and a half, and the MO insisted I meet with the Radiation Oncologist, and the Breast Navigator,  which was another  week  1/2 out approx. Then my surgery was a week after that.  But I am not in California, I am in a mid size city in Central IL.  Make sure you have a stong like for your MO, as you will see them more than your other docs.  I saw my surgeon 5 times (lumpectomy).  RO weekly duringradiation, but the MO will follow you for like 10 years. 

 Your frustration and wanting to move is something we all feel upon diagnosis. We feel like nobody is moving as fast as they should, but in reality, the cells (in most cases) have been very slowly growing for years to get where they could be detected.  Do your research, be your own best advocate, and if something doesn't seem right, speak up or get that second or even third opinion.  The worst wait for me was the processing of my Oncotype DX score after surgery.  It s the test that helps you determine if chemo will be of benefit or not, as well as predicting rate of re-occurance if estrogen positive cancer. 

You will meet an amazing supportive bunch of people here.  I'm glad you've met Dorthi, since you are both in the same spot today.

Anonymous

Before we are diagnosed with cancer, we all believe that it must be removed as soon as possible, or chemo started or SOMETHING done right away.

I know exactly how you feel - I felt that way, too, after hearing those dreaded words. But my Drs. all told me that breast cancer is usually very slow-growing and were actually developing over many years (some exceptions like inflammatory breast cancer). I had about 2 weeks between each stage - bad mammogram, office visit with surgeon, biopsy, surgery (lumpectomy in my case), then additional surgery (more lymph nodes & wider margins), pet scan. Then about a month until I started chemo because surgery sites were very slow-healing.

But it all worked out. In just a few months, I will be celebrating my 10 year cancerversary - 10 years with no evidence of disease!

Redheaded1

Oh Optimistic---I'd give my left breast to be in your 10 year shoes.....

Blessings2011

Hi, Erinsoule - welcome to the forum! I am so sorry to hear of your aunt's passing, and the fact that you've just been diagnosed.

After my first symptom, I think it took 24 hours to see a Breast Surgeon. Then I had seven different diagnostic procedures in a span of like two weeks. I had a complete diagnostic report on my biopsies by September 2011, and was given information about my choices. So I made my choice (bilateral mastectomy and reconstruction).... and waited.....

They had to schedule an OR, and coordinate the schedules of the Breast Surgeon and the Plastic Surgeon. I finally got a surgery date: Halloween. (Visions of nurses dressed like witches and clowns were freaking me out.)

Then they cancelled that surgery, and gave me another date in November 2011. Great! I started making plans. But then I got really sick, and they cancelled that surgery, and bumped it to December 2011.

Every day that passed by, I was certain the cancer cells were swirling around my body, and that if it hadn't been in the lymph nodes at diagnosis, it certainly would be by the time I had my surgery.

Eventually my Nurse Navigator talked me down. According to Dr. Susan Love's Breast Book, most cancers that are detected have been in the body for 8 - 10 years. And with the exception of some rare cancers, the cells just don't act like that. 

I am 2-1/2 years out now, and doing really well.

In answer to your question, once you have a PLAN, then YES - you will feel strong, you will feel like a fighter, and you will feel like a survivor.

GrandmaV

Waiting is so hard.  I felt like you that everything was moving so slow.  It was 6 weeks between diagnosis and surgery and felt as if I would loose my mind from the waiting.   You will feel better when you have your plan. 

Erinsoule

Thank you ladies! Im so very sorry for not relying sooner, or being so quiet on these forums, Im just trying to figure it all out My oncologist just threw a wrench in things too! Grrr! At my last visit, after I just got my brain wrapped around a double mastectomy...he suggests we try a lumpectomy first. He claims that early breast cancer responds just as well with a lumpectomy as it does a mastectomy and that too many women do it out of fear or a MRI result, which he claims is most often times over visual....so yes, now im completely confused and scared!

Nancyinct

Hi Erinsoule -

Deciding between lumpectomy and mastectomy is a diffult one. I had extensive DCIS and opted for a lumpectomy and a reduction on the other breast. After the lumpectomy, the pathology report showed that I had 3 areas of IDC with no lymph node involvement. My next decision was whether to have a single mx or double. I opted for a single mx with immediate reconstruction. There is no history of bc in my family so my decisions were based on that along with the hope that there was no invasive cancer and they could get clean margins. They were unable to get clean margins in addition to the IDS so there was no choice but to have a mx. I can tell you that the surgeries were not nearly as bad as I imagined. I had two surgeries in six weeks. My mx was on July 23, 2013 so I'm almost a year cancer free. Weigh your options, do your homework, ask your questions and you will make the decision that is right for you. The MRI's do show false positives often, but in my case they were dead on. You will find lots of information here and answers to your questions to help you decide which way to go.

Good luck to you and stay positive!!! The waiting is the worst as we all know.

Nancy

MsPharoah

Erinsole, I know exactly how you feel.  I'll give you my timeline.  I was diagnosed 12/4/2013.  I met with two sugeons and a plastic surgeon to make my sugical decision in Dec, 2013.  In January, I underwent genetic testing and had a MRI.  These tests helped me decide on a lumpectomy.  My surgery was 2/18.  I then had the oncotype test which took forever to come back. (Actually the lab had to send two samples because they didn't send enough cancer the first time.)  It was 4/4 when I got the test back and then I decided on chemo that started on 4/9.  After chemo, my radiation treatments started in August and I started on the hormone blockers......10 months of active treatment.   Much of the delay is caused by additional testing, 2nd opinions, etc. which are important parts of the process because you will have to make decisions and you want as much information as possible.   It also doesn't help that our surgeons, oncologists, etc. have other patients that they have to schedule around...and vacations too.  My one recommendation is that you take charge of setting up your appointments and let the scheduling nurses know that you are willing to take the first available appointment and can also rearrange your schedule if they have a cancellation.

Even though all of this is in my rear view mirror, I still remember how anxious I was to get my treatment started and how upset I was when there was a delay.  Hang in there, it gets better!  

MsP

Rosiesride

erinsole....I was given the option of the different surgeries...going into the surgery for lumpectomy and sentinel node biopsy, My surgeon  was surprised to find that I had 3 lymph nodes involved...what went from the thought of lumpectomy / radiation changed...the plan for me was to heal from surgery and begin chemo which would be about a 6 month deal...she told me during that time I should do my research, meet with plastic surgeon, radiation onc and get second opinions to see if I wanted to keep my lumpectomy or have a BMX w reconstruction...as she had said if it were her, with what my breast was like she would do a BMX.. I really like my general surgeon but I was not comfortable with the bmx recon suggestion...so I did get second and 3 rd opinions and for me I did finally decide to keep lumpectomy...for now.  I have finished chemo....will start radiation and then hormone blocker drug.  That decision was the hardest part of this journey and a difficult one but after my drs. Input and the tumor board consensus I am really at peace with it.  It is the right decision for me BUT it was a lot of work on my part and my husbands support to make the decision...take the time to look into options...this board has a lot of different groups who chose different things...bmx with recon may not be your only option at all...and it's true that most docs I think automatically assume reconstruction.  Good luck dear!  There are many blessings through this storm...the start of the journey is the hardest part...Rosie 

julieho

I so get how you feel about wanting to move forward quickly.  I was diagnosed June 1st after a biopsy of my tumor and had a BMX with reconstruction immediately following with tissue expanders done on July 2nd. So it was fairly fast. 

I was fortunate to have my meeting with breast surgeon, plastic surgeon and oncologist all within two weeks of diagnosis.

I have a big family history of breast and colon cancers so even though my lump was stage 1 it was grade 3 and HER2 positive, ER/PR-   So the oncologist strongly thought a BMX was a good idea given my mother and aunt all had breast cancers in both breast after their first diagnosis. 

I also had to have taxol and carboplatim chemo treatments for four months and herceptin for a year.  

My experience is even with a good nurse coordinator you have to be a strong advocate for the timeline you want. If your preference is to get going, have surgery, determine whether or not chemo is needed etc, then push hard for that.

I wish you all the best and glad you found these boards and wonderful women for support.

Take care,

Julieho