unloading...

liv2laugh

A month ago I found a lump (enter stage right let the headaches begin--too many hoops to jump just to be seen) a week later was diagnosed w/ stage 1 breast cancer. The oncologist initial treatment plan was chemo followed by lumpectomy/radiation in a few months. But first need an MRI and Genetic testing to determine if a single/double masectomy is needed.  ARE YOU KIDDING ME!!  The nurse navigator tells me she will take care of all the appt scheduling. Good thing I am a control freak because I had to call her to prompt her to schedule appts. I had an MRI & another lump was found but appears to be a fibroid.  When I indicated I may not want to do another biopsy instead of words of encouragement another nurse navigator states they could just do a masectomy....REALLY!!!  Last week I asked to be scheduled to be seen by the Oncologist but could not be seen for 3 weeks WTH??!  I thought early detection & treatment was key to survival!!  Dont they get it the only thing I want to fight is this damn disease!!  I gave up on the group on Thursday & I called Dr. Chang surgeon/oncologist @ UCLA Revlon Center she offered to see me on Tues. I am ready to move forward but anxious as to what she has to say.  I called the nurse navigator to request assistance w/ obtaining the remaining medicals.  She tells me that it is good I am seeing a surgeon and stay on top of this....weren't they supposed to help me w/ seeing a surgeon??  I am starting to understand why some women dont follow up w/ treatment.    To make matters worse my support group is 1500 miles away I have never felt more alone.   I just needed to vent ...tomorrow will be better

chrissyb

Hey Liv2laugh, welcome to BCO the best place in the world to unload anytime you want.......we have all been there and done that and know exactly how you feel.  You are most definitely not alone as we are all here for you anytime you need us.

Where you are in this journey is probably the hardest part....the testing and waiting and seeing one doc after another and hearing so much that your mind begins to go numb and you end up on auto pilot.....just doing what you need to do at that moment.............it does get better I promise.  Once you have your team assembled and a treatment plan is in place you will feel better.  Just don't forget, we all have to be our own advocate and fight for what we want and if you have a good team, that fight is so much easier.

Good luck with everything and do let us know hpw you get on.

Love n hugs.  Chrissy

dlb823

liv2laugh ~ So sorry for what you've been going through, but I'm so glad to hear that you have an appt. @ UCLA.  I had a lot of my tx there, and can't say enough wonderful things about the care I got.  I'm sure things will go much smoother now.

If you want to see a medical oncologist, Sara Hurvitz @ UCLA is absolutely top notch.

I'm glad you've found BCO, and hope it will fill in a lot of the support you're missing.  And you're welcome to call me if you just need to talk to someone.  I'll PM you my phone number, just in case you need it.     (((Hugs)))   Deanna 

CookieMonster

liv2laugh - I also have had all of my diagnosis and treatment through UCLA and it's all been top notch. If you need a second opinion surgeon, I highly recommend Dr. Nova Foster. She's my breast surgeon and Dr. Chang was my 2nd opinion.

If someone who's been through the UCLA system recently would be useful, feel free to PM me as well as Deanna. I know we're both happy to help with whatever questions you have. Hang in there and know that BC is not going to spread throughout your body in the next few weeks, you do have some time.

HUGS!

-Judy

Mallory107

Just want to say that you did the right thing by going elsewhere.  I had the same thing happen as you and it ended up taking 9 weeks from diagnosis to surgery.  If I had to do it over I would have switched doctors as soon as they told me it would take 2 weeks to see the surgeon.  And then I waited a whole week for them to schedule the surgery date which I think they actually forgot to do until I called them.The worst thing about the waiting is the stress that it causes you daily.  That amount of stress is seriously unhealthy for anyone-let alone someone with cancer.  Now that I have had my surgery I am in a completely different place mentally.  Feels like a huge weight has been lifted and I am now ready to face what will come next.

Good luck to you.

liv2laugh

Thank-you for the words of encouragement!!  Today started off shakey, billing dept initially informed me effective 1/2012 they did not take my ins....several hours later discovered that was not accurate AGH!!  Meeting with the doctors was as good as it could be.  I actually felt like I was being treated like a person with breast cancer vs one in a herd.  Have to wait for the genetic testing results to come in & do one more test before the treatment plan is decided. Today's good news: the mass is moveable & not attached to muscle.  I also realized that I am not crying as much PROGRESS

chrissyb

Liv2laugh, good for you!!!  Glad you got the Ins thing sorted but boo to the billing department for not checking their facts before contacting you and adding to your stress.  Glad to hear you are happier with your team now and feel like and individual.  It sounds like you are heading in the right direction and the treatment start day is getting ever closer, just a couple more things to finalise.  Believe me, when you get that date you will feel a whole lot better.  Great news on the movability of you mass no muscle attachment is a good thing.  Don't worry over shedding the tears, they really are a great stress reliever but if you are beginning to shed less I would say you are just about ready for the hard slog to come!

Chin up dear girl.......don't look back as you have been there just look to the future.

Love n hugs.  Chrissy

dlb823

liv, I'm glad things went well, and I'm glad the insurance issue was resolved.  Hopefully, things will continue to move in the right direction now, and once you have a tx plan in place, things should get easier.  Hang in there!    (((Hugs))), and let us know how we can help ~     Deanna

liv2laugh

I had been contemplating preserving my eggs prior to this diagnosis.  This decision has just been kick started due to the diagnosis.  However, one of the doctors called today and when I shared my thoughts I was told that is not a good idea due to the hormones involved. I have a consult w/ the reproduction specialist tomorrow.  Why is this a bad idea?  I was starting to reconcile this disaster and was thinking at least there was something positive to look forward to at the end of this.  It starting to feel like every time I have a reason to smile, its stolen.

chrissyb

The reason your doc has said not a good idea to do the egg saving thing because of the hormone used is that in order for you to produce enough mature eggs for harvesting, they need to give you massive doses of hormones, the very same hormones that feed your cancer.  So you would not only be preparing your ovary for production but possibly feeding your cancer and encouraging it to grow as well.

I'm really sorry that this is happening but having a good conversation with your reproduction specialist with clarify everything for you.

Love n hugs.  Chrissy

ChristinS

hi live2laugh...sorry you are having such troubles, especially from the professionals who are supposed to make it easier for you; i unfortunately also had a hard time with my scheduling, etc...i had a clean mammo in 2010 and less than a year later had stage 2 +++ breast cancer; my diagnosis date was the first week of june and  i didnt get surgery til 7/26/11, then chemo started the first week of sept...for such an awful diagnosis as cancer you would think it would move faster...but keep making those calls and being your own advocate...they have that saying for a reason "if you want something done right, do it yourself! " good luck and hang in there!

liv2laugh

Last week I was informed that the soonest I could get a biopsy for the 2nd tumor was 01/23.  I felt this was too long....this would be almost 2mo since dx with bc. The doctor agreed with me that was too far out.  She had no luck getting a sooner appt.  She offered to remove it surgically & biopsy it.  Went in today for surgery & the radiologist met with me & to my surprise said if I wanted the biopsy instead of surgery today she would do it.  PROGRESS!!  This biopsy was quite the workout leaving me a bit sore but I am walking on sunshine.  Here is to hoping I have a definitive trx plan by the end of next week. 

liv2laugh

Friday the 13 was a GREAT day!!  I am home for the wkend with friends getting my battery recharged. Nothing better than the love of friends/family. When I landed there was a msg from the dr stating the 2nd tumor is benign   Genetic analysis not in yet (should be 1/18) but at the moment it appears that I am a candidate for a lumpectomy followed w/ herceptin.  They will call me next week with a surgery date.  Finally tears of happiness and for the first time in a month I got 5 hours of sleep.

chrissyb

Yay Liv2laugh!!!  Great news!  So happy to hear that #2 is B9 and glad you finally got some decent sleep!

Love n hugs.  Chrissy

liv2laugh

The momentum sure is picking up.  Today got a call to see the dr & set surgery date due to a cancellation I am going in on Thursday.  I am thankful to be starting the treatment process.  However, I'd be lying if I didn't say I am extremely anxious. 

chrissyb

Liv2laugh, always remember that we are here to support you through this whole journey.  Being anxious before surgery is quite normal and you will find that once you are there and it all starts to happen you will be just fine.

I'm so happy that the process has begun and you finally have that surgery date!  YAY!!!

Love n hugs.  Chrissy

liv2laugh

BRCA test negative and surgery is done.  What a relief.  A little more soreness w/ the port but all things considered all is good.  Thankful for the help my grandfather is providing.  Didnt realize how difficult the little things could be.

chrissyb

Knowing that the BRCA is negative is a good thing.  The port soreness will settle in a few days so just take it easy untill then.  I'm so glad that your grandfather is able to help.........and I so agree, we take everthing for granted and it's not until we cannot do things that we realise how hard some of those little things really are.

When do you see your doc next?

Love n hugs.  Chrissy

liv2laugh

follow up appt is next friday.  I anticipate being transferred to the oncologist for the remaining treatment at that time.

I am so itchy and I have to keep the bandages on til tomorrow.  Any suggestions?

chrissyb

Liv2laugh sorry about the itchiness. The usual reason for that is healing but if it drives you nuts once the bandages come off just check and make sure there is no undue redness and if there isn't a cool compress helps to calm the itchies.



Love n hugs. Chrissy

liv2laugh

UGH!!  1 step forward 2 steps back   After getting grandpa to airport got a call from the dr.  She informed me the cancer was larger than first thought instead of 2 it was 4.5 additionally the lymph nodes removed had cancer. She wants to go back in and remove more lymph nodes.  we are meeting again friday to discuss options.  What questions do you recommend I ask?  I have been working on getting my head into the concept of chemo this news has upset my apple cart.  I really dont want another surgery but my surgeon has done right by me thus far.

chrissyb

Liv, sorry to hear that things were not as they seemed and you need to have some more nodes taken.  As far as questions go, I'd ask what this will mean in terms of treatment to follow as in chemo, how many rounds and what type, radiotherapy, yes or no and for how long and also ask how many more nodes she is thinking of taking and why.

Good luck with it all and please let us know how you get on.

Love n hugs.  Chrissy

liv2laugh

Met w/ the surgeon again, this information sure is confusing.  Apparently the aggressive cells were 1.8 & something else was 2.8 totaling 4.4.  But for staging purposes the 1.8 is what matters.  Currently the thought is I will have another surgery either Feb 9 or 10 to remove more lymph nodes.  Words from the dr "this will hurt".  I have hit information overload.  On Wed I meet w/ my team.  This is a several hour deal.  At the end of it I will have the treatment plan.  I am hoping to find someone to go with me to help w/ the info overload.  In addition to the questions chrissyb listed what should I be asking?  IDC stage 1, grade 2 HER2+ 

Any/all input is greatly appreciated.  Would love to hear from ladies familiar w/ UCLA

liv2laugh

Have experienced much change.  Decided to get a 2nd opinion as a result the 2nd surgery will be done after the chemo. Much more comfortable with this plan.  Completed my first round of chemo Thursday.....5 to go!!  Aside from a little bone pain it was ok. I am attributing the good exp to the hydration. Using the cold cap treatment....that is interesting.  At the moment my biggest frustration is insurance issues.