new and dont know what to do

Mena4911

This is my first post. I had core needle biopsy on Dec 16th. Result of P-neg, E-neg, Her 2 ++++, grade 3 . tumor 2.5cm.

This thing felt like it just went nuts and started growing like crazy after the biopsy.

Saw surgeon on Dec28th. Clinical stage 2a. He measured it larger and said it was probably some bleeding inside after the biopsy. Surgeon said chemo for 18 weeks then surgery then more chemo. Saw Oncologist on Jan 8th who measured tumor at 4cm x 5cm. Oncologist wants, referral to cardiologist, pet scan, breast MRI. No one has called me back with any of these appointments! I called this morning and they said they would call the cardiologists office regarding my referral. Waiting for that call back. I am having my port placed tomorrow morning and have chemo scheduled to start on Jan 19th. TCHP is the recipe.

This thing in my breast is growing every single day. I can literally feel it getting larger every day! I am feeling alone, scared and am afraid they are going to put chemo off longer for all of these stupid tests while this thing just keeps growing and growing!

I am a nurse and know what all the tests are for and why they want them and I have no problem with that. My problem is I am feeling forgotten. I have been reading posts on here and the info is helpful and comforting. I am wondering if anyone else has had this crazy fast tumor scary growth like I am having and if so did the treatment stop it? How long from diagnosis did it take to get treatment started?

Skittlegirl

By my second infusion, you couldn't feel my 2.9 cm tumor anymore.

I was diagnosed on 9/4 and started chemo on 9/30.

ElaineTherese

I wouldn't worry too much about tumor growth if you're already scheduled to have chemo on 1/19. I was diagnosed in late June and started chemo three weeks into July, 2014. Yes, HER2+ cancer is aggressive, but chemo works best on quickly dividing cells. If you feel like you've been forgotten, keep making those phone calls. If the medical professionals are unresponsive, you may want to consider getting care elsewhere. My breast care center has a nurse navigator whom you can call if you're having problems with coordinating care. You might want to see if you have one available, and ask him/her for assistance.

Moderators

Hi Mena, and welcome to Breastcancer.org,

You are NOT alone and certainly will not be forgotten here. You've joined an incredible Community which, as you have already seen, is full of very helpful, supportive, and knowledgeable members. We're all here for you, and will be right with you through your entire treatment journey.

Please come back often, post all your questions, share your experiences, and gather support here. We are all in this together!

Gentle hugs,

--The Mods

Mena4911

Thank you for responses! It sure is nice to hear from others! Glad I got the courage to finally post.

Alicethecat

Hello Mena

I'm so sorry you're going through this but...in case this is helpful, I was diagnosed with almost the same stats four years ago with a grade 3 tumour, the same as you. Had aggressive treatment for an aggressive cancer (please see signature). Doing well.

Why not you?

Good luck!

Alice

Beatmon

Stay on that phone! Your life is mainly important to you! If you were trying to get one of your patients scheduled, you wouldn't be slow....... I know, I'm a nurse also. We hate to push when it is for ourselves. Good luck

Mena4911

Thanks to all of you wonderful ladies! I made the call yesterday. Today I had my port placed and by this afternoon had return phone calls and all of my tests have been scheduled for next week. TCHP to start on the 19th. Gonna be a very busy week. Finally feel like my team is on the same page. All of this WAITING from the mammogram, biopsy, meeting doctors, treatment plans , tests, etc, etc is exhausting and scary! What a wonderful place this is to share with ladies who know exactly what I am talking about. Beatmon you are so right! I have been called a bulldog when it comes to getting things done and taken care for my patients but I am not good at all about standing up for myself. I need to work on that. Thank you all again!

I must share an exciting bit of news I got ; my daughter is expecting her first baby! What a wonderful blessing in the middle of all this craziness.

lkc

hi Mena.

Glad you posted.

you will get a lot of solid info, and lots of reassurance on these boards. The women here are knowledgeable and great ladies.

I am glad too to see things are moving for you. Once you get started with your tx. You will feel more in control . Her2 dx is aggressive, however the grace is that it is very sensitive to chemo, and of course Herceptin, as well as the newer targeted drugs.

I am a nurse too and was dx wit her/ pr , her 2 pos. bc. And a stage 3 C. That was almost 11 years ago. And I am blessedly well.

Congrats on your upcoming new grand baby. How wonderful !

I wish you a gentle journey.

lkc

I meant to say I was dxed with er/ pr negative, her 2 pos .

Mena4911

Ladies, I have another question. My estrogen result actually shows "1+ in about 1% weakly positive" . My oncologist said that is a negative. Should I be concerned about that at all? Or will my current recipe TCHP take care of it as well. Thanks again ladies for all of your kindness. IKC that is just awesome and very inspiring! Everyone is so kind in sharing info and experiences! I appreciate all the responses so much! It really helps!

suzieq60

Mena - I was over 90% hormone positive, so don't worry about 1% - hormone positivity is treated with anti hormone drugs separate from the chemo.

Mena4911

Had my first TCHP today , well yesterday now as I am riding the steriod and unable to sleep for second night in a row. I have compazine, zofran and also phenergan gel for nausea and so far so good. I also had aloxi IV today. My oncologist goal is no vomiting , ever. Love that lady!. Glad to have that first treatment behind me and hoping for it to do its job. Herceptin and pergeta were big loading doses this first time and will be decreased in next treatments. My insurance did not approve the Neulasta for first treatment and I will most likely get the neupagen next week after labs. Positive thoughts and healing bodies for all!!

brandysands

Hello,

Just got my pathology report. I am 49. Dx 1/17/16, IDC, 2.5 cm, Grade 3, ER-, PR-, HER2+ (FISH). I feel like I can't breathe. My appointment at Mayo Clinic is one week away. My primary physician didn't even call me personally. The nurse called to say the pathology results are in and that I could pick them up. What does HER2(ERBB2)/CEP 17 ratio - 2.4 and average copies per cell = 5.8 mean?

brandysands

Thank you for the information and encouragement.

Mena4911

Hi Brandy, I know exactly how you feel right now! So scared! Seemed like forever to get things started kicking this things butt! But , it will and yes the treatments for HER2 have had drastic improvements! My doctor calls Herceptin and Perjeta SNIPER drugs and has every confidence they work ! We will beat this!! Its great that you are going to Mayo!

brandysands

I hope you are able to get some sleep. I like the sniper comparison and look forward to hearing how your results are going!

Skittlegirl

I just had my last TCHP round last week. After the second round you couldn't even feel my tumor anymore. I will still be on Herceptin until the fall. Hopefully you will also have a great response to chemo.

brandysands

Skittlegirl: This is good to hear. Thanks for sharing. Where do you go from here with your treatment plan. I just assumed that surgery would be the first part of treatment and am now learning that many who are HER2+ start with chemo. It would be lovely not to have this lump to look at every day....

Denise-G

I'm over 4 years out from Her2+ diagnosis. I was only able to complete 3 months of Herceptin because of my heart -

and I'm still here! Almost all Her2+ patients get chemo first - back 4 years ago, I had surgery first with

a 6cm tumor.

You will make it through!! Sending my best!

Mena4911

I had first TCHP on Jan 19th. Tumor is shrinking every day !!! It is now smaller than it started out before the biopsy! How amazing! Brandy I am having 6 rounds of TCHP then mastectomy then will continue with Herceptin and Perjeta for a year. I just realized we are the same age and exact same diagnosis.

GentleBird

Hi Mena4911 -- Great news that your tumor is shrinking every day and that it is now smaller than before biopsy. I was just diagnosed too. Had my port placed this past Friday (2/5) and will be starting TCHP this Friday (2/12). I am still shaking my head that all of this has happened so quickly and am very scared. I will be having 6 rounds and then a mastectomy -- most likely a double. I am sending positive thoughts and hugs to you!!

Mena4911

GentleBird, I tried to reply once already and lost it. So will try again. I hope treatment went well for you and that you are doing well! I had second round this past Tuesday. Doing pretty well this time, mostly tired, itchy, scratchy, and did I say tired. Nausea has been controlled well , but constipation is a problem. I got the Neulasta shot this time, so I am hoping my white cells dont drop off as much this time. I am also strongly leaning toward double mastectomy. Cant bear the thought of getting mammograms on one remaining breast and waiting on results over and over again. This is a scary ride for sure! Hugs to you and positive thoughts as well!!! Lets shrink those little suckers!

GentleBird

Hi Mena4911 -- 1st treatment was okay on Friday. Little crazy with the steroids and benadryl before the herceptin -- one minute I was falling asleep and the next so anxious I couldn't stand it. Feeling okay so far -- trying to stay hydrated. Other than a slight headache, I'm doing okay. Insurance denied my Neulasta shot. So my MO will be doing blood work each Monday watching my counts. I'm guessing when it drops, he will apply to the insurance again for approval. I've been drinking POM juice and that seems to be helping with constipation. Maybe it might be helpful to you. I understand your feeling about the double mastectomy too MO suggested I worry about that at the end of my treatment and then decide what to do. My next go around is 3/4. Hugs to you & positive thoughts!!!

CameraKim

My stats were almost yours exactly!

I had a 2cm tumor and could almost feel it growing. First measurements were 2cm and a month later between 3-4. Took about a month from diagnosis to beginning chemo. In that time they run you through all kinds of tests. For me, MRIs and a PET scan which ended up showing two possible lymph nodes involved.

Three years later, I'm doing great! Hang in there. Treatment is even more targeted and effective now than it was when I was treated!

GentleBird

Hi CameraKim -- So glad to hear it has been 3 years for you and you are still doing great!!! I hold on to all the positives such as yours and hope that I will follow in those footsteps as well. Just spent the last 4 days in the hospital with neutropenic fever. Hopefully the insurance will not deny the neulasta shot again after chemo this coming Friday. My MO said he's happy with the TCH plan and doesn't think the perjeta adds much benefit versus how sick it could make me. Guess i've got to give him the benefit of the doubt on this one.