Angry, scared and in shock of my recent diagnosis

Scaredmama35

I guess I don't even know where to begin or what to say but here I am a busy 35 year old wife and mother of 3 and I was just handed some horrible news this past Monday, 7/14/15. I am having a hard time wrapping my brain around all the words I have heard the past few days...

So here is what I know and maybe just maybe someone can help walk me through this and help me understand even one aspect of this.

Like I said, I am 35 and what i think as a relatively healthy person. My mother has been nagging me since turning 35 to go get a mammogram. I turned 35 in April and decided finally to make the appointment in June. ( technically had has been nagging me for years, but I know baseline is typically 35) her sister, my aunt, had breast cancer at at age 31.....it came back with a vengeance and took over her body and she passed away at age 40. So, in all fairness my mom had reason to worry. Anyway, fast forward, I did the baseline and they wanted me to come back to do a ultrasound bc there were a few areas they wanted retested. Fair enough, few tears, but I could handle that. I went in and did the ultrasound and the dr said, my left breast looked good. Some floating lymph nodes is what I remember her saying or something but I just remember the good part. My right breast however had a area of concern that they wanted biopsied. So we had that done, but again I was reassured by the Dr that about 80 percent come back benign and that mine totally looked like the characteristics of a benign tumor but cancer is tricky and sometimes it hides in there. So the waiting game happened and although up to that point I was scared, I felt confident. So fast forward to this Monday, the day the results would come in. I felt confident but a little scared but 80 percent, well defined was in my head..... Well didn't work out in my favor. The phone call came and although I can't remember most of it I did hear , " I am sorry, unfortunately this came back malignant, we caught early, all is going to be ok, get you the best drs, surgery and so forth"  I just remember dropping, tears and yelling. My husband talks to the dr to find out what she really said and I sat there and cried, a cry I have never had before. So the next day, I went in for gene testing, where I cried. I then met with the surgeon who said it looks like stage 1 grade 1 tumor, which he said is good. ( ha nothing is good about cancer) and we were waiting to hear if it was estrogen positive, which I guess is what we want. Then he sent me to a MRI that night, which in itself was just scary but the Valium helped! so I apologize for the length of this message, but my husband found this message board for me in the hopes that it would help, and I think it will. Because right now, I just joined a cancer group.... A club I never wanted or thought I would be in... No offense! I don't understand any of the terms used bc up to this point in my life I have just been dealing with my kids and dirty diapers and little kid problems. I guess I just feel lost, my eyes are swollen and puffy, I don't have a plan in place yet bc we are waiting results....so I sit here with a small tumor 1.5 cm to be exact, in my right breast, hoping the MRI didn't find more. No matter what I do, the cancer is in me, and I don't know when it is coming out or how it is coming out but it is there and quite frankly I am pissed about it! This feels like a nightmare, i cant wake from. If anyone has any words of advice I would so appreciate them. Thank you! 

april485

First of all Scaredmama35, please take a deep breath. Yes, you have heard the words no woman ever wants to hear (or man for that matter) in that you have just found out you have Breast Cancer (abbreviated here often as BC) but, the worst part of this is the waiting to find out what will happen. Once you have a plan in place, you will feel a bit better and you will know how you will proceed. Stage 1 has an excellent prognosis and Grade 1 means it is slow growing. Your Breast surgeon (BS) will counsel you  on lumpectomy vs. mastectomy and then you will make a decision.

They will likely do an oncotype score which will tell you whether chemo would be beneficial or not (but with your young age, they often treat cancer agressively so don't be surprised if you do have to have it) and then you will have many screenings and possibly take tamoxifen if your cancer turns out to have estrogen receptors that are positive (ER+) so that is all I can say for now.

If you are having a really hard time, please ask your doctor for some ativan or xanax to get you through the rough part of this. There is no shame in getting some help with sleeping etc. Huge hugs and know you can come here day or night to ask questions and someone always is at the ready to help you as much as possible. I know you are scared but we have been there and can truly understand!

 

farmerlucy

Hi scaredmama - So sorry you have to be here. Those are words no one should hear especially at your age. I am so glad your mom pushed for the screening.  It all sucks. April gave you great advice. I wish there were some magic words we could says to take away the pain and the grief and the sheer terror. Just take things one step at a time. Put one foot in front of the other. Lean on the normalcy of life with your little ones. That will help. Come back here often. We have been where you are. Gentle hug. 

Anonymous

(((scaredmama:)))

Just bumping again to see if you might be browsing the boards but not yet ready to talk.  Probably...your head is swimming with terms you've never heard and numbers that are confusing you...and you are just "dealing" with things right now. Since you joined a cancer group so quickly, I'll guess you are finding support with your friends, family, and that group.  But I wanted to let you know that this place can be a "go-to" group for so much.  Hopefully, you will be so busy for the next few months with your wonderful life and the steps you'll be taking to fight this stupid beast that you won't have time to visit.  But if you ever want to research, or need support, this is a great place.  Lots of understanding.  Lots of data.  No judgment.  Just hugs. 

9.5 years ago I went through a similar diagnosis. Stage 1 (1.8 cm).  I opted for a mastectomy without reconstruction, I had one chemo treatment and quit (long story-do a lot of research and don't rush into decisions) and 5 years of Tamoxifen/Aromasin (some of the many, many meds, terms you'll find discussed at length on these boards).  I had only one child at the time, and I recall never once being worried about my own situation, only hers.  (I was a single Mother).  I worked all through my treatment (no choice), and did not have much care/support.  But now I hope I'm looking at cancer in the rearview window, and my daughter, who went to college on full scholarship, just graduated college and is about to head off to her first real job.  My oncologist has cut me loose back into the world and says I am "essentially cured."

So make sure to use your support team, find good doctors, listen to everything, take notes, do research, don't rush into decisions (though we all want to - I remember saying "I just want it out right now."), and get lots of hugs.  Best to you, and here's a cyber-hug from BCO.

Jennie93

Big hugs to you!  Oh, how I remember the feelings from that time. It is truly overwhelming at first. I did not find this place until after my surgery - wish I had. The support is awesome.  

Like others have said, take one step at a time, keep reminding yourself that it won't be fun but you will get through it and come out the other side.  Definitely stay away from Dr. Google, he is not your friend, way too much outdated & wacky info there. Stick with reputable sites like this one to get your info.  

Hang in there, you will be ok!

lintrollerderby

Hi ScaredMama35. Welcome and I'm sorry that you have cause to be here. Receiving the news and being in the just-diagnosed phase is a whirlwind time. There is a lot to learn and it's not particularly a subject you ever wanted to get a crash course in. I was diagnosed at age 34 and I understand the shock that not only comes from receiving a breast cancer diagnosis, but being in the rare group that gets it at such an early age.

While you are right that no cancer is good, if it is indeed a Stage 1 and Grade 1 cancer, the surgeon is also correct. But, I guess a better way of putting it would be that it would be among the best bad news you could receive. Yes, you do want it to be Estrogen Receptor Positive (ER+). It opens up treatment options for you. IF it is Stage 1 and Grade 1, the most favorable characteristics would be Estrogen Receptor Positive (ER+), Progesterone Receptor Positive (PR+), and HER2/neu Negative (HER2-). You will only receive an OncotypeDX test and score if your tumor tests ER+ AND HER2- (with any PR result). If your tumor is negative for all three of these (this is called Triple Negative which is what I am), chemo is a certainty. Also, if your tumor is HER2+ with any combination of ER and PR, chemo is also a virtual certainty. I will say that if the preliminary results are correct that your tumor is Grade 1, it makes it more unlikely you're dealing with a Triple Negative or HER2+ tumor because those are more likely to be Grade 3 (occasionally a 2); therefore, if this Grade 1 is correct, chemo is not as much of a possibility.

Genetic testing is important because of your age. I had no family history and found that I carry a mutation in my BRCA1 gene. 

If you have any questions or just want to vent, please go right ahead.

Best of luck.

Scaredmama35

Wow thank you everyone for responding, it is so helpful and makes this dark hole not feel so dark. 

I did receive some good news after I typed my first post, my Dr. called and said some good news, MRI came back and all was good except that little spot that caused this huge mess in the first place. What a huge sigh of relief that was. He did say my tumor was actually 1.7 cm where as before he thought it was 1.5 cm. However he said a ultrasound tends to show smaller while a MRI shows bigger so probably if is right in the middle of 1.6 cm.A little hard for me to wrap my brain around the fact that something that small can be such a issue, but obviously it is. 

We are still waiting to hear if I am positive/ negative and all that wonderful stuff. He also wants me to talk to a genetic counselor to get some answers if indeed this BRCA comes back positive. 

My best case scenario, which I am hoping happens to me is that I test positive for the ER, negative for the Her and of course negative for the BRCA gene. If that is the case I have a lumpectomy and radiation. ( at least this is how I understand all of it) 

How long is the recovery for lumpectomy/ mastectomy? 

Thanks again for being so helpful... I appreciate it! 

Anonymous

You'll get a HUGE range of "recovery" times for lumpectomy/mastectomy.  Depends on what you mean by recovery, depends on which procedure, depends on the PERSON, depends on what type (unilateral vs bilateral mastectomy, immediate reconstruction, etc.).  I will give you brief recap of MY history.  I had unilateral, modified radical mastectomy plus the removal of 3 lymph nodes.  Not skin sparing and no reconstruction.  One of my biggest surprises was the length of the scar, which is 8-10" and extends from sternum to under armpit.  It makes sense, once I think of all the skin that had to be removed, but I had not expected it (especially when my cesarean scar is about 1/3 as long for an entire 8#3oz baby). I went into hospital Wednesday morning, surgery that day, released the next morning, very little pain meds, and I almost went to my daughter's first high school band concert that day (Thursday). The only thing that stopped me was that I felt I needed to wash my hair, I was tired and hadn't yet dealt with the drains and bandages, etc.  I knew I didn't have the energy for both the shower, hair, and concert. Sleeping was uncomfortable. I was back at work (desk job) on Monday-5 days after surgery. I think that was pushing it a bit, even for a feisty one like me.  Then here were physical exercises to get things working.  I could drive (not stick shift, power steering of course), but reaching to place something in the back seat took awhile.

Again, though - there is NO correct answer.  But maybe you can come up with an average (for your planning) by others' experiences.

K51

Dear Mama35,

Keep your Head up and be strong for your kids, I have been doing lots of research and you are one of the lucky ones! Stage 1- has great prognosis for the future. I too just started the forum and find it very  helpful. I am going for a Diagnostic Ultrasound in a couple of weeks, so I am a little scare, but hopeful and whatever it brings my way, if bad news should arise...I plan to fight....

Kicks

As whatnow said - we are all so different, thus 'recovery' time varies greatly.

I too had a unilateral modified radical mastectomy but had 19 nodes removed.  No skin sparing or recon.  (My C-Section scar is about the same length as mast. scar but my first one was for a 10lb 4 oz son and second for a 9lb 2 oz son.)

I had no issues with ROM (Range of Motion) after surgery but many do.  I had been told here to get button shirts/etc. as opposed to my usual 'winter uniform' of a turtle neck under a sweatshirt but had no problem pulling on what I had worn in the day before when I left the hospital the morning after surgery.  So I put on what was my norm to leave rather than going with what I had brought with me based on what others had told me I'd need - wrong.  Son did pick me up as someone had to 'check me out' (he and Hubby had made the decision who would).  I was driving that afternoon in the Bronco (auto., ps, pb) that Son had gotten me when I started chemo so I didn't have to drive my 5 speed, no power GMC Sonoma.

I had no bandaging issue.  I left the hospital strapped tight in a compression wrap.  It stayed in place until I saw surgeon a weekmafter surgery.  When he took it off I was surprised that there were no external sutures or clips - just a thin line.  All sutures were internal and he had used surgical glue for the outer layer - so just a fine line.

Have you seen a chemo Dr yet or the surgeon mentioned neoadjuvant chemo (pre surgery chemo to shrink it)?  It is SOP for some types of BC but is being used more for other types now also.  Have you been told the type?      We are all so unique - there is no 'One Size Fits All'.

AJ62

Hello - 

I recently joined this group online and found everyone here helpful in answers I have seen when replying to others. I lurked before I posted.

I agree with what others say, take a deep breath. 

We are here for you -- 

My mind is still swimming from when this all hit me back in March/April. I had an insurance mess up so while I was waiting for things to get better, my one tumor went from 4cm to over 9x9cm now as of last week. *Sigh* 

I just started Chemo this past Monday. Yesterday was my one Neulasta shot. I am ready to fight this fight! 

I am doing the Neoadjuvant therapy. I am positive that this will help shrink this tumor and perhaps I will not need the mastectomy come November. A friend of mine had a tumor under 3cm and was able to have a lumpectomy after Chemo. 

Get a good support system and keep in touch with us here as we help each other through this journey. 

MomtoIrishQuads

Scared Mamma,

Stage 1 is not a death sentence.....and in fact, you will read on these boards that Stage 2 to 3 aren't either.  And there has been much progress in slowing down Stage 4's, too.  It's not like when your aunt had it.  Things have really progressed, thank goodness.  I think it's so scary because of these stories from way back when.  Sure - there are scary stories nowdays (there are some on this board, but they are the exception, not the rule).  The really great news is that you got screened and now you will know to get regular screenings - and to do things that will make a difference (e.g. if you are estrogen positive, reduce the estrogen in your body - because it is the fuel that typically grows this stuff).

BRCA1/2 is key - and hopefully you don't have it (I got tested twice my history was so strong) - but if you do, then you know to do a mastectomy and not a lumpectomy.  

Try to relax.....I know the "C" word is a hard one to swallow, but the "C" word in BC isn't like it is in some other parts of the body. 

One thing I will tell you is to be sure to insist on an MRI going forward.  I did so (after having Stage 0) and found new Stage 1 early.... and you will learn to love that MRI machine - it is your friend (or it at least has become mine). 

Oh - and in answer to your question - a lumpectomy is easy peasy (I've had 2).  It's out-patient and I was up and about within a day.  (I was embarassed that people brought us food).  I had a separate sentinel node biopsy (I was considering a mastectomy - knee jerk reaction initially) and I found the sentinel node biopsy a bit more "tender" (since it's under your arm).....with 3 young kids and the stamina and tolerance for pain that 3 little ones give you, you will be fine.  Keep us posted.

Oh - I forgot to mention the really good part of all of this - if like me, your boobs have gone south, you can get a free breast lift.  It was the best thing out of the whole deal!  

Mom to Irish Quads/Deb

Helenna

Scaredmama35  so sorry you have to be here but these ladies are truly amazing in their support for us newcomers. Just know that the most scary time I found was in the beginning when I didn't have much information or a plan of action. Knowledge is power and the more you learn from your medical team and get your plan in place you can then start focusing on what you have to do to kick this cancer's butt.  As to length of recovery, it differs of course with each situation, for me now at 4 weeks after surgery ( mast with no recon ) I am about 90% back to normal activities……I just don't lift real heavy things with that arm, and still waiting a couple more weeks to go swimming but other than that there isn't anything else I'm really not doing. Only took pain meds for 3 days after surgery, the drains were a bit inconvenient but came out after two weeks. ((hugs))

AJ  I saw in another post you mentioned inverted nipple…..that is how I found mine!  My mammogram from 2 years earlier had not yet shown the tumor so I am very thankful that the tumor reached up and started pulling that nipple inward to get my attention. You have a great attitude especially after having to deal with insurance-ugh! Sending good vibes that you will get through chemo with no SE.  I find out in couple weeks about onco test results and if I will need anything other than hormone therapy. ((hugs))

Scaredmama35

Thank you all again for all the support! I feel a tad less anxious and angry, I feel like I can handle this now that I have done more research. I go today in a little bit to genetic counseling where I hope to learn some more information. I am currently scheduled for a lumpectomy on Aug 8th. Of course that could change to a mastectomy if the BRCA test comes back positive or I am triple negative.... But still waiting on that stuff. 

I feel a tad bit of a " a$&" for complaining over stage 1 grade 1 when I read that so many others are so much further along and by the sounds of it you all are handling this with such grace. One day, I too plan on being that way. 

It is funny to me that I find more peace coming here, talking to complete strangers about my cancer then I do to my closet friends and family. Maybe bc you and I all share a common bond... A bond that stinks but it for sure is a bond. 

I appreciate everything you all have said so far and welcoming me into this group with open arms. I am sure I will be asking about 1000 questions along the way!  

Thanks so much!! 

StacyBrian

If I could offer any words of advice/personal experience that might help - DO NOT COMPARE YOUR DX TO OTHERS!  For you, this is *the scariest* place you've ever been.  Don't do yourself the disservice of minimizing that.  There's this proverb - "the loss of a child's doll hurts the child the same as the loss of a king's crown hurt the king."  I have a "worse" diagnosis than you, but I could easily minimize mine by looking at those that have a "worse" one than me.  I don't believe that is emotionally healthy for a person.  You have every right to be scared and freaked out, no matter what the names and numbers are.  Let yourself process that, is my advice, without comparing to anyone.  This really, really *stinks.*  And don't let yourself convince you of anything different ;-).  You just have to figure out how to keep your own balance....