Just Diagnosed- feel overwhelmed with info

kkp40

Hi, this is my first post to the community. I'm 40 with 10yr old daughter. I was just diagnosed with  HER2+ BC....Grade 3 stage was somewhere between 2 and 3 .  Met with the Oncologist this am to go over treatment options.

Option 1: Sandard Chemo ( Taxotere/Carboplatin), Herceptin, Perjeta; then surgery; then herceptin alone...

Option 2: Clinical Trial of Lapatnib (sp?) and Herceptin for 12 or 24 weeks (determined by computer)/includes biopsies before and during, after complete -then begin Option 1treatment

Not looking forward to the chemo which is not surprising, I don't think anyone "looks forward" to it. I know its my choice and choices are good, Just wondering if anyone else has had success with clnical trial or advice on how to get through all this info so my brain doesn't feel like it's going to explode. Also any advice on when and how much to tell a child. Thanks in advance.

Kris

Moderators

(((((hugs)))))) kkp40. We are sorry that you have joined the club, but welcome to an amazing group of individuals. It is very overwhelming in the beginning... you are not alone. 

As for Option 2, you may want to read about Tykerb (chemical name: lapatinib). 

Here is a link from our site: 

http://www.breastcancer.org/treatment/targeted_th...

There are so many women in our community with young children. They will be sure to be able to offer suggestions, but you may find this also helpful from our site:

http://www.breastcancer.org/tips/telling_family/ol...

We are thinking of you! 
The Mods

LittleFlower

so sorry you're joining us Kris.  I remember very well how I felt when I was diagnosed.  I can't really offer you too much help with respect to your questions, but I wanted to give you a big welcoming hug. It's kind of interesting that since I've had treatment it seems that the standard may have changed.  I was also her2+, but the only med to help at that time was herceptin.... It wasn't that long ago and already treatments have improved!  You're right that nobody looks forward to chemo, but it is do-able.  Some tolerate it better than others, but there are actually a lot of meds that are given to help with side effects. This is truly something that gets easier as time goes by.  Just remember to be kind to yourself in this difficult time and this shall pass.  One day at a time. Big hugs.

kkp40

Thank you LittleFlower for the kind welcoming. It is appreciated!

Melrosemelrose

Sorry that you find yourself here but yet glad that you have found this website.  I know you feel like your head is going to implode and explode from all of the medical info and lingo thrown at you right now.  I remember my first appointment with my oncologist and know exactly the overwhelming feelings.  It's a lot of digest when you are learning to accept the fact that you have breast cancer and then you have some decisions that need to be made fairly soon.  I got a 1/4 inch packet of paper to read and go through when I was told that I might qualifiy for a clinical trial.  My first inclination was to not do it but then after reading the information about the clinical trial itself and what it entailed, I opted to participate.  The clinical trial I am in is not the same as yours.  If you are wondering where you can find information about that particular clinical trial,  head over to clinicaltrials.gov ( here is the link; http://clinicaltrials.gov/).  If you know the exact name of the trial, you can also do a search on the discussion boards to see if there is a thread where others are participating in this trial.  I had long discussions with the research coordinator before I signed all of the consent forms about side effects, how carefully I would be monitored, the length of the study and drug costs and administration costs.  The other aspect about doing a clinical trial is to make sure your insurance will cover the cost of drug administration.  In my case, the drug study paid for the drug itself as well as echocardiograms and some of my onco appointments.

As for chemo, it is doable.  I got lots of help and tips about how to handle chemo and side effects.  I know I was prepared before I had my first infusion.... thanks in part to many here.  Visit the chemotherapy discussion thread for newbies to get some lists on what to have on hand and what to take to the infusions.  Learning about chemotherapy will help take some of the fear that you may have. Just remember that you are not alone and never will be.  You will not be administering the chemo to yourself and you will not be left alone during the infusion process.

I know learned many things about myself and people during my active treatment.  I learned to be patient and to not be in a rush with anything and to be easy on myself.  You don't have to be super duper woman here; just super woman will do.  Wishing you the best and please come back and keep us posted.  You can always private message me.  Sending many hugs and postive calming and healing prayers, thoughts and energy.

mjm1

So sorry you are facing all of this. My Mum was diagnosed in Jan with HER2+ stage 2.

The standard option certainly sounds like excellent medical care - Mum's on Taxotere,Carboplatin, & Herceptin, (TCH) after surgery, but I'd love for her to be on Perjeta too if that had been an option

Clinical trials can be a good thing. I don't know a lot about tykerb (lapatinib) although it's an established drug.

For more HER2 specific advice you could also look at the link below and maybe also post your qs there as well: (there are some HER2+ ladies who keep abreast of all the latest medical research)

http://her2support.org/vbulletin/

I wish I could give you some advice re talking with your daughter, but I don't know (some of the Mum's will probably be able to share their experiences). I feel for you though, I know it's extra tough having the pain & worry about how all this affects your child when you've got so much else on your plate.

Your oncologist may have mentioned that treatments and outcomes of HER2+ have improved enormously since the pre-herceptin days, and continue to improve at an amazing pace (it's kind of flavour of the month/year/decade in oncology research because each breakthrough is paving the way for more).

Draw on any and supports -including here, but also practical support if possible to get through chemo. It's unpleasant (Mum finds usually one week of each three week cycle is particularly bad, but then gets better and better til next time - still a bit fatigued though), but you can get through it.

kkp40

Thank you all this is all so very encouraging and makes me feel better to know I am not alone. I will keep you all updated.

IwillbeatCancer2014

Hi,

I have recently been diagnosed with Stage 2 breast cancer. I don't have the jargon down yet so bare with me. I felt a lump on Valentine's day 2014 and things have been spiraling since. I went to my OB/GYN and she recommended that I see a breast surgeon. They both said they didn't "feel" anything weird about the lump but let's just remove it just in case it grows into something. Well that begins my story.

 I went in March 7th for the biopsy but they removed the entire lump so they now refer to it as a lumpectomy. Well 4 days later they call me and tell me it's cancerous and that I need to have additional surgery to get a clear margin (I think Im saying this right). Well they sent me for a breast MRI and they found 2 spots at 3 oclock. They told me the spots needed to be tested so that landed me with another procedure 3/21.

The dr at the time told me they were taking 100% of the tissue out and sending it to be cultured. Well in the mean time my BS (I think that is the abbreviation for breast surgeon) told me that I needed to be considering a Mastectomy if the tissue came back cancerous because of the distance between the 2 areas 1@ 8oclock the other at 3oclock. If it wasn't cancerous a lumpectomy and some slight surgery with my lymph nodes to remove a few was all I would need. If it was cancerous I would need to have the breast removed.

Well of course I got the all clear so we went into surgery on 3/27 for the lumpectomy and she removed 2 of my nodes and somehow ended up removing more tissue at the 3oclock spot because apparently he only took 70% on the 21st.

Anywho I was so excited that it was all done, just kind of relaxed did the bed rest thing and waited to have sutures removed on the 8th. Thinking I was done with breast cancer other than the radiation and chemo which I figured would be a walk in the park since I only had to do 30 radiation treatments and take a pill for 5-10 years.

Well I go on the 8th only to hear that I need a mastectomy because the tissue that they said wasn't cancerous may now grow back as cancerous. So needless to say I'm going for a second opinion. So it's been a long 2 days for me and I am glad that I have found this forum.

So I have a million and 1 questions about this process  and I look forward to chatting with you guys and best wishes to you all.

mjm1

kris - yes, let us know how you go. It's a pretty intense time - so much info and so many emotions.

Iwillbeatcancer2014 it must be so hard to have so many changes of direction. We found that each new change / bit of new info that wasn't 100% positive was extremely unsettling and would take awhile to get our heads around, so how awful to have so many procedures and adjustments to make. Glad you found this site to ask lots of those million qs!