Please tell me

CherryHill

I've been diagnosed with invasive breast cancer on my 35th birthday, what a joke..I am in shock, confused, depressed and lost, and very worried for my two daughters who are 1 and 2 years old.

I have few questions and I hope you ladies can give me some advise.

1. I have done mammograms, ultrasounds, MRI, genetic testing, tumor biopsy and lymph node biopsy. Do I miss anything?

2. I found my surgeon (recommend by biopsy guys) and I am ok with her. Do I need to look for the second opinion? I feel like making second appointment is so time consuming, all thr best doctors in NYC metro are booked for weeks in advance. I just want that thing out of me ASAP! Plus, do second opinion of the surgeon is this vital? Do I get it right that the surgeon anyway just removes the tumor and forwards you to an oncologist?

3. When do you look for the rest of your cancer team? Before surgery? After?

4. When do you look for your plastic surgeon? How do you look for the right one? Do cancer surgeons take into account what you plan to do later regarding your looks?

I had two pregnancies one after another, then tandem nursed the babies till the day I was diagnosed. I gained a lot of weight during these last three years and the plan was to shed the baby weight and get a breast lift and augmentation. Is it still possible? On the first and only meeting with the surgeon she said I am a good candidate for the lumpectomy. That means radiation later on, right? And radiation means (almost for sure) no lifts or augmentations afterwards, correct?

5. Ladies, how do you manage to get yourself together again? I've just been thru tests only so far, and it was horrible, and part of me is already feeling like giving up and letting the cancer to take over.

How do you do it? How do you move forward? What gives you strengh?

LovieLovie

Welcome CherryHill to the club no one wants to join.  What a horrible birthday gift.

Choosing your team of doctors is a personal decision as well as 2nd opinions.  Take a list of questions to your appointment and see if they are answered to your satisfaction.  I have a level of confidence in my doctors that I can ask them anything.  That's what you want. 

Everyone goes thru a different journey.  I can't answer all of your questions but I can tell you this isn't fun but you can do it.  You do need 2 teams.  Your doctors and your support team.  Make sure someone from your support teams goes with you to your appointments.  You will need a 2nd set of ears. 

You may want to find out if there is a nurse navigator that can help you thru your own personal process. 

This may be a challenging year for you and the nice part is that your kids are too young to remember what you went through, but you will come out of this a stronger more empathetic person with a new appreciation for everything in life!

There are some wonderful people here who will shepherd you through this and the nice part is that this is 24/7. 

 

Moderators

Hi CherryHill, and welcome to Breastcancer.org, although we're sorry that you've had to be here.

Besides the great help and support you'll get from members here in the discussion boards, there is a section in the main Breastcancer.org site that you may also find helpful. It is the Breast Cancer 101 section, designed for those who are newly diagnosed. 

Let us know how everything goes!

The Mods

Jenwith4kids

I got through the early time (not even three months ago at this point ... feels like forever) by taking one thing at a time and trying to remember that "you don't know what you don't know" and you can't guess.  Each early step adds a piece of information to the puzzle, and you have to get to a certain point before anything becomes clear.  

The other thing I did was call on many of my friends who had been through this. The ones who are 5 years or more lend hope for me to hang onto (and perspective, it's wonderful to hear all the details they forgot - meaning...this is awful, but it will one day be behind us) and wisdom and the ones who are closer in provide practical support - information I can use NOW.

Don't get too far ahead of yourself.

Xanax helps too, call your primary and ask for some.

I did not get a second opinion for my surgeon.  I was comfortable with her and made my decision for a bilateral mastectomy early, no surgeon was going to change my mind on that.  If I didn't like her, I would have gotten fifteen opinions until I found a doctor I liked.

I chose to do reconstruction at the same time as mastectomy, so I needed my plastic surgeon right away.  You will likely interact more with your plastic surgeon than your breast surgeon afterwards, so make double sure you like that person.  It's also helpful if they have worked together before.

You typically don't need an oncologist until after surgery.  But that is not always the case - depends on your specific situation - some people have chemo before surgery, some don't.  Your breast surgeon can guide you on that.

Radiation is not always a given - though typically with lumpectomy it is.  Otherwise it depends on too many factors that you can't guess at.  Remember: you don't know what you don't know!  

I'm in NJ too - though much further north than you...  Happy to be in touch.

Jen

Mayanne

Hi Cherry,

I just wanted to stop by and give you a hug.  You are at the most stressful stage right now - it gets easier as you have a plan and march into battle.  I found that as soon as I allowed myself to walk through the "door" to the world I was frightened of, I noticed that it was routine for the professionals and patients. People smiled, people chatted about daily life.  It was thought of as a treatment towards getting well.   It became less scary.

The way I found my doctor was to choose a hospital that I had great faith in.  It's in Boston and one of the best. I had first chosen a local hospital, just to make life easier for myself.  I'd be able to drive myself to the little local place, but worried that because of traffic, etc, my husband would have to drive me to Boston. But a nurse friend told me to "go to the city", no matter what. My referral person at my PCP's office, BTW, told me it would take a long time to get an appointment in Boston.  She said that before I could even get an appointment, I'd have to register, etc.  I didn't let this persuade me, because by then I had my heart set on Boston, so I informed the referral secretary that I wanted the Boston hospital regardless of the wait time.  The VERY next day I got a call from the Boston hospital and was phone registered and had my appointment to see the doctor in a couple of weeks.  I knew that if I didn't like the assigned doctor or felt uncomfortable in any way, I could always change doctors. But, I did like her very much and put my trust into her recommendations. When I went to my first appointment I thought I'd want to have a mastectomy, but she recommended a lumpectomy (although was willing to do the mastectomy).  I decided that lumpectomy was a good first step - that if something else showed up in the pathology report after the surgery, I could have the mastectomy.

Your BS will probably have a RO on staff (at least in my case - I met the RO the same day as I met the BS).  I found that I'd be able to have my radiation treatments in a hospital close to my home - it is affiliated with the Boston hospital. (That worked out very well as I was able to drive myself there every day (unless someone just wanted to go with me). 

As for a plastic surgeon, if you have lumpectomy only, you wouldn't need one.  If you do decide on the mastectomy, you could see the plastic surgeon later.

What gave me strength in the early days before I received results was to look at the very brave ladies around me - both on the board and women I knew in real life (including my mother and sister) - who got through it and moved on.  My mother had BC in 1978, had a mastectomy, was found to have cancer cells in 3 out of 12 nodes, had six weeks of radiation,  and then lived for 33 years until age 93.  You can also look for the thread on this site called "Inspirational Stories", which should help!  Good luck to you as you begin this journey and come back and tell us how you are doing, please!

Mayanne

The actual name of the thread I mentioned above is Success Stories and it's in the Biographies and Inspirational Stories section.

noonrider

Hi! I was just diagnosed last week too. Stupid Cancer. I don't have time for cancer. Probably none of us do. 

I think that every healthcare system in the country is probably a little different. For me, I had the mammo, ultrasound, biopsy all on the same day (all within an hour. It was just supposed to be a routine mammo!!!) Luckily my husband came with me and was there when they told me "99% sure this is going to come back as cancer." I was diagnosed on Friday the 21st, had my MRI the following Monday. Surgery is scheduled for this week on Weds. From there they'll have me meet with the oncologist to go over the final treatment plan when they have the surgical pathology report back. I am working with a breast center so they have a pretty standard procedure and were able to tell me steps 1, 2, 3, etc. So I know the steps, I just don't know whats on each step! Waiting for the SNB is killing me. It determines whether I'm doing chemo or radiation. 

CherryHill

Thank you ladies for all the replies and support.

Cant wait to see my BS on Wednesday and to know the date of the surgery.

funsizejen

Don't forget the oncotype test if you're a candidate for that.  Find out what plastic surgeons are on your insurance, then ask your surgeon about who they work with often and recommend.  You are at the worst part right now.  Get something for the anxiety and something to help you sleep.  Oh, and as for what gave me strength during this ordeal, it was my children.  Just look at your beautiful babies, and make it your mission to do all you can to be around for them for a long time~ Good luck to you!

Holeinone

Cherryhill, so sorry that you got this beast so young. Not fair....My personal Dr. Chose the surgeon & made the appt. & picked my oncologist. I could of said no, but I live in a rural community. I trusted her to send me to the best. My surgeon was fantastic, very pro lumpectomy but told me to think about my options. If you have a GYN or PCP that you like & respect, you might talk to them. 

This is the worst part. Waiting for this to happen & then more waiting. It is truly a nightmare. I did not get any 2nd opinions. 

Like you, I wanted it out today. From biopsy to lumpectomy was 6 days. Be gentle with yourself, we as moms & women expect so much of ourselves. We all are so overwhelmed in the beginning, nervous of everything that might happen.  Posting here helps so much. We have been there & still in treatment, most of us. My cancer breast looks better than the other. He took a golf ball size chunk, it lifted my breast. Also, I lost 20 pounds immediately from stress. Hang in there....

Nancyinct

Hi Cherryhill, I am coming up on my first birthday in April. I was diagnosed on my 52nd birthday. Although my children are older (I have 4) my dx was very hard on them and the rest of my family. My ob/gyn chose my hospital and bs. I went to Smilow Cancer Center at Yale in New Haven, CT and they are just wonderful. You might want to consider going to a cancer center as this is what they deal with every day. I had an entire team to assist me and push and pull me through every procedure, appointment that I had to go to/through. I would suggest that whomever you select as your bs that you go on-line and check out their patient reviews, I find that to be very helpful when selecting any type of professional including doctors and hospitals. I am a paralegal and it's just in my nature to investigate everything.

You are in a very overwhelming stage of this terrible dx and I want to tell you that YOU ARE GOING TO BE OK!!!!!!! Assemble your family support team and let them help you through this because it will also help them through it. Write your questions down and take them to your appointments. You will find a wealth of information here as well and additional support for those of us who know exactly what you are going through.

So, take a deep breath.....kiss those babies and get ready to fight this thing. We are all here for you!!!!!

Nancy

rumoret

All these fantastic women are giving you great advise on how to navigate this journey.

Hugs,
Terry