Recently Diagnosed, Not Feeling Very Strong

SweetMaggie

I very much appreciate this forum and the support from everyone.  I posted originally under another topic while I've been going through the diagnostic part of this journey but have finally been diagnosed (although not staged.)  I have at least 3 tumors in one quadrant for an area of about 3 cm.  So far the results have been negative for ER and PR and it looks to be aggressive, which makes me feel even more depressed.  I will meet with my surgeon and radiation oncologist (I think that's a standard practice in case lumpectomy is considered) this Friday to map out a treatment plan.  I don't really understand when we test the lymphnodes but assume that will part of the consult.  I hadn't read much about radiation or chemotherapy and just started some reading today - whew, it seems so overwhelming, scary, and never ending.  I'm definitely worried about telling and dealing with everyone where I work, I have a very publicly and visible, fast paced job. Funny, I just thought to myself that that part isn't really important. Thanks to everyone for all the good thoughts and hugs.  I guess I'm moving from TripAdvisor to BreastCancer.org for the foreseeable future.  I hope to one day be able to provide positive encouragement to others here, it really helps!

Alive4Five

Maggie, it can be overwhelming right now, that is for sure. BUT like you stated, we ladies are all on this same journey. We are all on different levels of it too; so, getting the support and information and most importantly the comradery amongst us all, in that we are here for each other for whatever, whenever needed... to vent, ask questions, seek info, seek some kind words, or laugh, cry...etc...

This is probably the worst time of it all, because you are not fully aware of all the 'details' yet...but please know we are here, and surely there will be someone who 'gets it'...ya know? 

Don't know if you pray, but if it is alright, I will be praying for you! Hang in there! (((Hugs)))!

ChaosRains

I am so sorry, I was just diagnosed last week and in forming of a treatment plan stages myself. 

  It is all very overwhelming.  I keep reminding myself to just breathe...  

everyone here has been so amazing

Melrosemelrose

Keep breathing, SweetMaggie...... keep on taking those deep calming breaths!  Yes, it definitely a time when you are being bombarded with information and what if's.  I know that you will feel a little more at ease once you know your treatment plan and where you are heading.  I also know that hurry up and wait feeling you may have.  Your situation will reveal itself all in due time.  Hopefully, patience will become your friend as it became mine.  For the time being, try to stay off Dr. Google.  Dr. Google is not nice.  Sometimes the information is outdated, inaccurate and just may not apply to your situation.  Instead, focus on your case.... on your facts and your test results.  It would be a good idea to check out the BCO.org main website Treatment Section.  You will find info and a list of questions to ask your surgeon.  If you have questions, write them down and take them with you to your next appointment.  If you can, have a significant other or good friend or spouse go with you to your appointment.  It is so good to have some emotional support at this initial appointments plus another set of ears to hear what is being said to you.  I can recall there were times that I know I could see the doctor's lips moving, sounds were coming out but my brain couldn't comprehend a thing.  It's okay to ask questions at these appointment and to ask the explanations to be repeated.  If you are feeling anxious, you can definitely ask for some anti-anxiety meds.  If you have a chance, get a month to month calendar so you can keep track of your appointments, tests, etc.  You may also want to prepare a list of phone numbers of doctors, 24 hour pharmacy nearby, emergency numbers to take with you to your appointments.  Also a list of allergies to meds, foods, etc is handy as well as a list of previous surgeries.  I know at these appointments/tests, there are always forms to fill out.  It is so much easier to have that info ready to go so you don't have to search for it when you are trying to fill out the forms.  So...... get ready for that emotional roller coaster that you have boarded...... fasten that seat belt and hold on tight..... we will ride the roller coaster together..... scream our heads off, laugh, cry and always remembering that you are not alone.   Wishing you the best and keep us posted.  

ChaosRains

Melrose, 

I noticed you are in Houston... I live in Sealy so will be having my treatments in Houston.    Do you have doctors (Oncologists I keep trying not to say the word crazy huh? lol)  you would recommend? Clinics? 

SweetMaggie, 

Sorry not trying to hijack your thread I know you can talk to people individually on here somehow but my befuddled brain hasnt figured it out quite yet

SweetMaggie

It really is so helpful to be able to come here and talk to other women who have been in the same shoes.  I know I'm not supposed to feel bad for others, but my poor husband is so supportive, and I really don't want to totally overwhelm him everyday, but he is my lifeline right now.  I know he just feels so badly that he can't seem to comfort me.

I just got an email from a friend I haven't seen in a while who went through her cancer journey several years ago (some kind of lymphoma) and she knows of a great place to get a wig.  I'm sure I will need chemo so I'm thinking heck, I might as well just cut my hair really really short beforehand and start with the wig.  Wondering if others do this...

ChaoRains - yes, I am trying to doing the same, reminding myself to breathe...I will look for you here over the next few weeks.

 

proudtospin

hang on and the Texas gang will certainly give you many names!  if impatient, create a thread with that name!

you are at the nastiest point and it is less stressful when you know the who and what of your treatment

then again, before you know you will be on the other side....

MsPharoah

Sweet Maggie,  so very sorry that you find yourself on these threads.  The beginning is the worst; at least it was for me.   I think that in the beginning, you should focus all your energy on meeting with and selecting your medical team so that you can get the treatment plan all mapped out.  Bear in mind that there may be some additional tests you will need for your surgeon, radiologist to make a plan.  In my case, I met with a plastic surgeon to talk about reconstruction options and issues since mastectomy was an option for me.  I didn't end up taking that option, but the meeting with the plastic surgeon helped me make my surgical decision. 

If you want to keep busy, make some notebooks to keep all your test results and any information you get regarding your diagnosis, treatments, appointments etc.  This is also a good place to keep track of your questions and write answers during your appointments so you don't forget.  I also bought a desk calendar to keep all my appts straight.   You are correct.....you will probably have chemo. I would strongly recommend that you get an appointment with your dentist and make sure your teeth are clean and healthy.    You will not be able to have dental work or cleaning during chemo so if you need a couple of fillings....get them done now.  I was OK losing my hair.  My wigs were gorgeous and I was very comfortable in them.  The problem I had with hair loss was concern that I would lose my privacy.  So what I did was to work from home while I was transitioning to and from the wig.  I found that once I was comfortable with how I looked in the mirror and with short outings to dinner and errands, I then had no problem rocking the new look at work, etc. 

I only told family and very close friends about my diagnosis.  I am an executive and I only told a select few people at work...my boss, HR director, and my direct reports.   I worked from home during my surgical recovery and did well.  I had chemo every 3 weeks for 4 1/2 months and took off treatment day and then worked from home for a couple days in each cycle when the side effects were most difficult.  This allowed me to conserve my energy..no commute and no need to put on makeup and dress up.  LOL.  It wasn't fun but I made it through.  Radiation was easy in comparison.   My husband took very good care of me during treatment and this allowed me to maintain my normal schedule.  Your husband will be able to comfort you during your treatment and he will be so very important to your health. 

I hope that this helps you.  You will find lots of information on this site and once your treatment plan starts, you will feel so much better.

MsP

Moderators

SweetMaggie, welcome to Breastcancer.org, although we're sorry you've had to find this great community!

As well as the helpful information and experiences you'll receive from other members, the main Breastcancer.org site's section Breast Cancer 101 is a good place to learn about the tests, medicines, treatments and terms you'll encounter. 

• The Mods

Melrosemelrose

ChaosRain- Just sent you a private message with info about my Houston medical team.

SweetMaggie

Thanks for all of the encouragement and tips to start planning.  I was able to read my pathology report today on-line, confirming what the radiologist told me last week.  A 3 cm area that includes 3 areas of ADH, possible medullary carcinoma, and IDC, grade 2 (with an in-situ component.) ER/PR negative, but nothing about HER2.   Interesting comments about lymphocytic infiltration (some interesting studies out there about how this component may be helpful in treating triple negative cancers.)  I do want to understand treatment options before I go to my surgeon on Friday.  I have now told a few more family members and friends (that seems to be really hard) and have so many supportive people that I'm feeling a bit better today. The more I talk about it, the more it seems real and that I need to start thinking about how to fight it instead of just feeling paralized.   I'm going to try and limit myself to how much time I spend on the internet researching side effects of treatment, and try to spend some time enjoying the weather and do a little hiking this weekend   

ChaosRains

Maggie,

Thats exactly what I am doing i give myself an hour a day to research... 

I did tell my friends and family right away though. Im glad. I did.  I didnt know how to tell anyone so for the most part i sent text messages saying basically i dont know how to say this exactly but i was just diagnosed yadayada 

Just remember... You are not cancer it may feel like everything is up in the air right now but underneath all the stress fear and confusion you are still you... your friends and family may be scared or upset and thats understandable. If so, at least yall can be scared and upset together.

You need some type of support system in place and the way i look at it the more people the better.

Keep your chin up!

dancingdiva

Hi everyone,

i'm newly diagnosed too. One day at a time. One hour at a time. That's what I keep telling myself! Sometimes I'm living the day or I'm at work and I'm thinking," what am i doing here??!!" i have cancer. I should book a ticket to Bora Bora!! Forget about work. But if I stay home and search the internet all day or don't be around people, I'm going to go nuts.

Homehelp

my wife was diagnosed 2 months ago 

March 17 th 

IDC 2 cm node negative

Had bilateral mastectomies 3 weeks ago April 30th 

Amazing team in Atlanta ... Latissimus flaps 

Strange thing though ... Biopsy path was weak estrogen positive 60% 

Now they repeated it and said estrogen is NEGATIVE 

They even sent for an oncotype which is now worthless since now  ER negative 

Will get 4 cycles of T/C ...to be safe 

Wishing you all the best 

farmerlucy

Homehelp - The oncotype test will also show their own testing of the tumor receptors ( E &P). Also you can get a second opinion on the pathology at Johns Hopkins. Here is the link. Best wishes.  http://pathology.jhu.edu/department/services/secondopinion.cfm

Homehelp

thanks 

Oncotype showed estrogen negative 

The oncotype number was not helpful since estrogen negative 

But the biopsy was 60% estrogen positive 

Getting slides reviewed 

Nimm

Hi everyone! Recently diagnosed too. I was diagnosed last Thursday...woke up three days thinking "I have cancer"...in shock and sad......past that!!! I'm feeling stronger now! Thank God! I have an oncologist appointment on the 27th and although I feel I can't take anymore bad news I'm ready and staying hopeful.  All I know now is that cancer was not in the lymph node they biopsied and my cancer is grade 1. Have researched and know that the grade is important in breast cancer. Being grade 1 gives me some hope. However, the thought that this could have  spread to the lungs, liver, bones, and/or brain makes me sick to my stomach! Not knowing is very scary but staying hopeful. 

Holeinone

Nimm, 

It is overwhelming to say the least. Not having cancer in your nodes is your good news.

Melrosemelrose

Nimm- Keep breathing...... You will get through this time when everything seems like hurry up and wait.   You will feel a little better once you have a treatment plan.  As with all of this, please do not Dr. Google since Dr. Google is notorious for being inaccurate, out of date and may not be applicable to your particular case.  Try to stick to the reliable places for information such as the BCO.org main website.  

Wishing all of you who have just found this place the best and all of the strength and courage and peace that you will find as you move forward with your treatment plans.  Just know that you aren't alone and many have travelled this way before you and are here to help you through this time.

Nimm

holeinone, it was just a biopsy on one lymph node that was a little enlarged.  I think he biopsied it because it was the only one enlarged. However I think they have to check the rest during surgery. Do they normally enlarge if there is cancer??Radiologist  said only one was and that's what he biopsied?