If you have just been diagnosed....

Dear Sisters,  Today is the 365th day since my diagnosis and I put on my survivor shirt and pedaled into the sunrise to celebrate with a happy and grateful heart.  What a year this has been, some of it was downright terrifying.  I wanted to share this with you all, that you will get through it, you will.  It will make you harder than steel when you come out the other side, you watch.  Never, ever give up, bow your head down and head into the storm.  Keep putting one foot in front of the other til you get through to the other side.  I send you all my love, my prayers and my support as you begin your journeys.  I would have never chosen this path willingly, but I am making the most of it and there have been so many angels that have come into my life because of it, that I can only say now, I am blessed. 

strasberg, your body will tell you when to get going again and you can walk even if you can't run for a bit. You are at a huge advantage being in great shape going in, that will help you so much. I walk, ride my bike and have fallen in love with yoga since January, it has helped my body and my mind, I will practice it for the rest of my days. Like you, I had no other health issues for the Docs to have to work around.  I take no other Rx besides Tamoxifen now.  You will be OK, you will go a little batshit sometimes, but you will be OK, your babies will give you the strength and focus you will need to keep moving forward.  I will keep you in my prayers, God Bless you real good.

strasberg ~ I'm so sorry about your diagnosis, but I'm glad you were pro-active about starting mammograms early.  The surreal state you've described is pretty much what we've all experienced -- like a bad dream that you can't seem to awaken from -- and a sort of detached feeling, like it's a story you're watching someone else live.  I think this is just the mind's way of coping with trauma & stress.  Another common thread you'll find here is that, like you, many of us were very active prior to our diagnosis, and being in excellent shape and not having immediate reconstruction should make for a very fast recovery from surgery, and getting back to training & running will also be a huge advantage as you move forward. 

Good luck on Wednesday.  I'll be thinking of you.  Please stop back as soon as you're up to it and let us know how everything went.  You might also want to look for a May surgery or mastectomy thread.  (Click on Forum Index above and scroll down to the surgery section.)  Going through this with others can be a huge help and support.  And you may also want to check out the surgery tips thread pinned to the top of that section.  Ideas like placing frequently used kitchen items at countertop level, so you don't have to reach or bend, etc., are things you can do in advance to make recovery easier.     (((Hugs)))   Deanna

Allenan, I think it can vary quite a bit, depending on the facility.  With my lumpectomy, I didn't get the results until my follow-up app't. 4 days later, and even then it seemed somewhat incomplete.  OTOH, when I had my mast, my BS was sitting on the edge of my bed two days later with the pathology results.  What day did you have your surgery?  If you don't want to wait through the long holiday weekend, maybe you could call your surgeon's office and see if they've received it yet and might be able to give you enough information to ease your mind.  Otherwise, you might also be able to call the facility where it's being done and see if you can get a copy yet. 

Glad to hear your surgery is behind you and you're recovering well!    Deanna

Hi Iguise,

I was recently diagnosed with stage 2 to 3 B.C. I am still struggling with moving forward. I am just reaching out to anyone out there who can help me get past the sudden tears. Just thinking about all of the meds bring me down. Any ideas on how to move forward?

Barlee. 

Barlee, I'm so sorry about your diagnosis, but glad you've found this website.  The rollercoaster of emotions is very normal -- something we've all experienced.  It should get better once you find a medical team you really like, have a gameplan formulated, and get your treatment started.  Where are you now with this process?      (((Hugs)))   Deanna

Hi, Mary, and welcome to BCO -- although I'm so sorry you have reason to join us.  I have absolutely no experience with your concerns, but as you probably already know, radiation is considered the standard of care with a lumpectomy, to insure that no stray cells will return to the original site of your IDC and recur.  But I totally understand your kidney concern and have a couple of suggestions.  First, I think you need to discuss your situation with a number of radiation oncologists.  It doesn't seem like targeted breast radiation should scatter as far as your kidney, plus I would think they could also use a shield.  But I'm not a doctor or a scientist, and I think you need to talk to more than one to get the full picture and to be able to choose one (assuming you decide to do RT) who instills the most confidence in you about protecting your remaining kidney.  What does your kidney doctor say about breast RT (vs. a CTScan, which I assume would be for your full body, or at least include the kidney area)?  

Chemo's a different scenario, but again, if it's strongly recommended, I would urge you to talk to more than one oncologist, as well as your kidney doctor.  But hopefully, this won't be necessary.

The other suggestion I have is that you post your very specific concern as a new thread where more people will be apt to see it.  Maybe use a title like -- Has anyone undergone radiation with one kidney?  Or, Do I need to worry about radiation with one kidney?  -- and put it in the Radiation Forum (click on Forum Index) above.  And then you can post a similar question in the Chemotherapy Forum, if that becomes a concern.  

Hope this helps, and please let us know what you find out!  And good luck with your lumpectomy! What day is it?    Deanna 

I was just diagnosed one week ago with Mucinous Carcinoma.  Things are moving quickly.  I saw a surgeon yesterday and he has my surgery scheduled for Monday...July 11th.  What I understand is I will have a partial mastectomy with localization wire, Auxilary Sentinal node biopsy, and possible Auxilary Lymphadenectomy.  One month after surgery I will have radiation.  Depending on what the lymph nodes look like, there may be additional surgery to remove more.  i see an oncologist after the surgery at some point.

Does anyone have any advice for the surgery recovery?  I have heard different stories about radiation and am curious about that as well.

Thanks all!

Janis

Hi, Janis.  So sorry you're joining the club that none of us ever wanted to join, but I'm glad you've found BCO.

If you click on Forum Index above and scroll down, you will see an entire forum devoted to surgery. As you probably already know, a partial mastectomy (or lumpectomy) is normally done on an outpatient basis.  As I recall, I had some bruising for about a week, but then healed pretty quickly after that. 

As far as removing additional nodes, the recommended protocol for that has recently changed significantly.  I will try to find a link to that research for you because they are now saying that removing more nodes does not change our prognosis nor outcome.  I think it's something you'll want to be sure to discuss with your breast surgeon.

Within the Forum Index, you'll also see a section on Radiation.  Personally, I thought it was a piece of cake -- no problems, and nothing to have feared -- and I think that's the general consensus of many women here.  But I did interview more than one radiation oncologist, and I was very picky about the credentials of the one I chose.

You mentioned things moving quickly.  Have you had an MRI?      Deanna 

Hi, Nancy ~ I'm so sorry that you have reason to be here, but I, too, am glad you've found BCO!  

It sounds like you have a really good grasp on your diagnosis (dx) and treatment (tx) plan, and I'm very impressed to hear how smoothly finding a medical team and scheduling your app'ts has gone. So often women without health insurance have a very different tale to tell of not knowing where to turn for help.  Not only is it wonderful that you are in such good hands, but it sounds like you already have some excellent practical information to share with others who find themselves in the same boat.

I can so relate to the surprising outbursts!  I had one at my then 25-year old son that came out of the blue and still haunts me because it was so mean and totally unlike me.  As you've probably figured out, our minds have a way of compartmentalizing alot of the fear and anger, so that we can continue to move forward and do what's necessary.  But then it can erupt without warning!  

The language will be second nature to you very soon!  Many of us joke about getting our masters or Ph.D. in breast cancer (bc), because it is very much like learning a foreign language.

Sorry to hear about your husband shutting down, but I'm sure he's very worried, and maybe even feeling guilty about not having medical insurance.  A couple of things that come to mind would be talking to the psychologist or counselor where you're being treated.  Most facilities offer them as part of our tx, and they usually have wonderful advice to share with us and our families, if he'd be willing to go and talk, too.  Otherwise, go yourself and see if you can get some suggestions to help him.  Another idea is a book called The Breast Cancer Husband, by Marc Silver.  You can look it up on-line.  It's written by a guy for guys, using a lot of sports analogies, and I've heard wonderful things about it.   (((Hugs))) and let us know if you have other questions.   Deanna

i can vouch for the book too. i sent it to my husband as an e-book he could read on his Kindle. He really found it helpful. Normally he would NEVER read anything like this but because I asked he reluectantly agreed. He is a dentist so he wants FACTS, and he found the author and his research and comments to be very believable, reliable and credible. But he is also a sports enthusiast and enjoyed the way it was presented with sports analagies. He only wishes he had gotten it much earlier. In fact he suggested to both the breast surgeon and onc that they consider giving it to their new patients. High praise from a usually introverted guy.

Hello All,

I was diagnosed with IDC (Stage IIb, Grade 2, ER +95%, PR +95%, HER2 -1) on May 27, 2011 @ precisely 8:56 am. I am 44 and married w/3 daughters (22, 14, & 13). I don't even know where to begin! I don't think I have ever cried so much in my entire life! Thank God for a supportive hubby, family, friends, church family, and this site! 

While I am a new member to the "by invitation only" club that, once you get that "invite", unfortunately, you don't have the option of turning it down or saying, "No thanks, I have a busy life to attend to and I'd rather not take part", I am not new to supporting several frends through their membership in the "club" that eventually took their lives! (1 friend died 5 years before my diagnosis and the other died 5 days after my diagnosis ). 

Here is the start of my journey:

2/2010 - during self breast exam, felt lump, had annual mammo 3/10/2010, got "all clear, see you next year" letter, didn't follow up, didn't worry

5/3/2011 - Routine GYN appointment, advised of lump I felt last year and also of "all clear" letter received from mammo. After CBE, GYN advised to get mammo to be sure it was still "nothing" to worry about

5/17/2011 - Had routine mammo

5/19/2011 - Received call of "concerned about your films" please come in for additional testing

5/24/2011 - had additional testing (several mammos, including US mammos). Radiologist strongly suggested having biopsy done on LB, RB, and R Lymph Node under arm. At this point fear is setting in and I am assigned a "Nurse" to assist in setting up appointment for BS. BS is able to see me "immediately". Starting to worry, but I didn't have time to call my hubby, or anyone else for that matter, to go with me. BS scheduled and completed US guided core biopsy same afternoon! Panic is starting to set in :-( Hubby returns to appointment with me....thank God, as I have a severe phobia to needles.

5/27/2011 8:56 am - BS called me at work to say, "LB has a Phyllodes (sp?) tumor that will need to be removed, RB and Lymph Node have tested positive for cancer. I will need to see you in my office @ 4:00 pm today! I couldn't even call my hubby to tell him because I was @ work and I knew if I heard his voice, I would have "lost it". So, I sent him a text...well of course he called me and....yup, I lost it! I left work early and hubby & I went to appointment. My body was there, but everything else is a blur! I can definitely relate to the others who commented that they felt like they were having an "out of body" experience. Unfortunately, I still feel that way!

Everything is moving so fast.....I feel like I am on a Merry-go-round that has malfunctioned and won't stop spinning! I want to get off!!!!! I have had Breast MRI, CAT Scan, MUGA, and MRI of Liver - all test came back fine. I have also had genetics testing and will receive results on 7/20/11. My Port was inserted on 6/7/11, as the recommended treatment is neo-adjuvant chemo (A/C x 4, T x 12), then lumpectomy, and lastly radiation for 6 weeks. I was scheduled to begin chemo 6/16/11. I decided that I wouldn't start because one of my daughters just graduated from college, we planned her party for 6/19 and I didn't want to be sick. It was then scheduled again for 6/30, but I postponed it again because I wanted to have 2nd and 3rd opinion results before I committed to the treatment plan and we had a vacation planned for 7/8 - 7/17 for which I also didn't want to be sick. I have had 2nd and 3rd opinions from Breast Surgeons, a 2nd Oncology opinion, and have a 3rd Oncology opinion scheduled for 7/18.  

I feel like my life has been replaced by somone else's life that is overwhelmingly overcome by a flurry of tears, fears, uncertainty, appointments, more appointments, test, more test, and uncontrollable emotions. It has taken me this long to gather myself together enough to be able to post this synopsis. I am grateful that I have found this site and was able to read about the incredible strength, bravery, resilience, and close knit, caring community of fighters and survivors on this awesome site! Thank you to all who have posted here....words will never be able to express how much help (&hope) you all have given me. I pray God's speed on all of your test results, treatments, and recoveries!

Yvette (I know I can do ALL things through Christ who strengthens me.....but why do I have to prove it!!!!)

Yvette, I'm so sorry about your dx, but I'm glad you've found BCO.  I'm also glad that you're taking the time to get 2nd and 3rd opinions, although I hope that with a positive node (which means your bc has figured out how to travel), you won't wait too much longer to either start chemo or have surgery.

I'm curious why you're considering neo-adjuvant chemo.  I don't think you mentioned the size of your lesion.  Is it particularly large?  I'm also wondering about the AC+T.  Is that what the 2nd onc also recommended? 

I'm so sorry that you've lost two close friends to bc.  Hopefully you already know that bc isn't just one disease, and that some types are just extremely aggressive and resistent to treatment, especially if they're not dx'd early.  But the majority of women who are dx'd early are fine after the recommended treatment, and you should be, too!   (((Hugs)))    Deanna

  

Yvette, by national site, do you mean the NCI-designated cancer centers?  There are actually very few of those, approved by the NCI because of their reputation in the medical community and participation in research.  Any hospital can have a dedicated Breast Cancer Center.  There are two in the area in which I live, and neither one is NCI-designated.  

I am partial to NCI-designated cancer centers for a number of reasons, based on my own experience.  They see the most cancer patients, so logically have the most experience -- especially if anything is the least bit unusual, they are more likely to have seen it before. Likewise, they do the most bc surgery, so have the most experience with that -- hundreds of surgeries a year vs. a few a month.  They are up on the latest research because they are either doing it themselves or they participate in drug trials.  And you have access to everything under one roof, including plastic surgery, which is usually not the case with smaller Breast Cancer Centers, which can be excellent for diagnostics (mine was), but may fall short in the other areas.  And lastly, their outcomes are statistically better (per US News & World Report's annual ranking of major medical facilities).  Any facility can put a "Breast Cancer Center" sign on a building, and while they may have some excellent physicians and programs, they're not the same as Memorial Sloan Kettering, MD Anderson, Dana Farber, UCLA, and institutions of that caliber.

By the way, my sister administers an NCI-funded radiation oncology research program., and it was she who urged me to go to an NCI-designated cancer center after my local lumpectomy.  My bio page tells the rest of the story.   Deanna

My wife has been daigonised with multifocal idc ,2lumps of 2.5cm & 2.9 cm she was operated for mrm on 2nd July ,chemotherapy will start from 20th July I am worried ,Plz help about prognosis and survival ,she is just 41 years