Newly Diagnosed - Could use advice

PaulaSJ

Hello all!  An irregularity was found on my late December 2016 mammogram and by January 30th, 2017, I had a biopsy. Two days later I received the call telling me that I had cancer. I watched both my parents succumb to this terrible disease; my Dad when he was only 43 from lung cancer and my Mom more recently, from mestatisized breast cancer in 2015.  My older sister was diagnosed with Stage 3 breast cancer in 2012, she had a lumpectomy followed by chemo and radiation. Five years out - she's cancer free. My younger sister is 36 and was diagnosed with endometrial cancer this past December. 

My cancer is ER+, PR+, Her2 negative and all the genetic testing, including the BRCA2, came back negative. I have a small tumor in my left breast; it is less than 2 cm. There is no indication of lymph node involvement. I have a choice to make regarding surgery. I can have a lumpectomy followed by radiation or I can choose a mastectomy  the left or both breastS with implant reconstruction.  I am a diabetic, which puts me at higher risk for healing complications and infection.  I did have neck surgery in August of 2016 with no problems. 

I have to make the surgical decision very soon and could use some advice. 

Thanks!

teresa41

Hi

I  was diagnosed in 2009 the first time at 41 left side I chose to have a mastectomy just to give me piece of mind for me ! in 2010 i was diagnosed a second time at 42 right sideanother mastectomy I am good  with the choices I made for me my lymph nodes were negative both times and I was ER+Per+ her -.. I had reconstruction a few years later  the latissimus dorsi reconstruction and I am also good with that decision I have been ned ( no evidence of disease ) it will be 8 years in April 1st time and 7 years in April 2nd time ! No one can decide what is the right or wrong decision  I  am one that goes with my gut and it's usually a good outcome for me ! I do wish you the best on everything the site is very helpful lots of nice people here 

good luck to you ! 

Teresa

booksandnumbers

Newly diagnosed

Good morning. I was diagnosed in January 2016 with Stage 2 IDC, ER/PR+, HER-, no lymph node involvement. I had pretty much decided to have a mastectomy but after several talks with my surgeon I changed my mind and had a lumpectomy. She told me that with chemo, a lumpectomy, and radiation my chances of recurrance would be the same as with a mastectomy. I also do not regret my choice. Downtime has been minimal which was also a factor in my decision. All I can say is make the best choice for you and find out as much as you can beforehand. Knowledge is power. Wishing you the very best. 

disneyfan2008

Welcome-this is a great place

Welcome-this is a great place to vent, get advice-

 

HUGS

 

Denise

Rotkvl

New to the site and newly diagnosed

All of this has been moving pretty quickly. I had a mammogram on February 8, follow up ultrasound on February 24, two biopsies on March 2 and a diagnosis on March 3 - Stage 0 - DCIS. I was told the prognosis was excelent since it was caught early. Now I'm waiting for an MRI appointment and an assignment of an oncologist and surgeon. I was told that if the MRI comes back showing it hasn't spread past the ducts surgery should be successful. Even though I have a great prognosis I still have questions. I would also like to talk to someone who understands what I going through and is supportive. I had a large hematoma after the biopsy that was treated on Tuesday and was told by my husband that there was nothing to cry about and stop having a "pity party". I'm also a Army Veteran so I'm dealing with the VA. Thank you for your support. 

Apaugh

Have all the pitty parties you need girl

I had a biopsy, as most on this site have.  They can hurt and they do bruise.  OUCH.  I feel your pain honey.  It is ok to have a pity party.  It is also alright to get a second or third opinion.  This is your life we are talking about.  Tell Mr. GI Joe it was not his breast they poked.   

This is your time, you will need all the help you can get.  Be kind to yourself.  

Hugs,

Annie

MBoilardC

Me too!

I had my yearly mammogram late December and was called back for more pictures when I was on my way to a dream vacation. I made the appointment for when I would be back. On March 3, 2017 I had a lumpectomy for DCIS in my left breast. The biggest shock was the size of the incisions!! I looked and felt like Frankenstein. I had a day of 'ANGER" this week and now I am feeling somewhat better. I go for the results of my margins next Wednesday. Scary.

The doctors are throwing the typical protocal at me -- lympectomy then radiation then tamoxifin. I am going to give a lot of push back and ask for lots of data and I want to know if there is anyone anywhere doing something different. It seems like the treatment is worse than the disease (at least for Stage 0 DCIS).

Any comments. Rotkvl -- let your husband experience you having an angry day!! My husband ran. Ha ha. Let the emotions flow where they will.

Hugs,

Michelle

Rotkvl

We need an owner's manual

Why can't we have an owner's manual on our bodies or at least an extended warranty. My husband and I had just celebrated our 24 Wedding Anniversary right after I was told I had a "suspicious" area in my right breast and would need an ultrasound. I am an Army veteran and I'm used to being in control or at least being able to find a viable solution.

I understand that my husband is struggling with this as well and he may think he is helping me to be tough to get through this but this is all new to me. He made me so angry yesterday when he told me to stop with the "woe is me" when I tried to tell him about my challenge of scheduling an upcoming doctor appointment with the VA, I have barely talked to him today. I have my MRI scheduled for next week and then the surgeon is supposed to meet with me so I don't even know what my treatment will be.

Thank you for your support. It really helps with this very strange journey.

Mariangel43

pity party and other stuff

Dear ladies, 

I have read your comments and since I have no partner or husband I can't say much about what's going on with them.  Maybe they are as scared as we are and the way to show it is making sarcastic comments.  However,  some of my friends at the beginning began to make strange comments about my attitude to my tx and I stopped them sharp.  According to them I had to be submissive and accept whatever the docs decided for me.  I was furious. I told them my body was mine and that I would decide for me what was convenient and made me functional because I still work and have a fracture on my right foot and knee.  What I expected of them was their companionship, not their judgments; I never asked them to agree with me so I didn't need their agreement to continue with my decisions.  If they could not cope with my decisions they were free to go. No more comments, judgments, and luckily, the friendship continues.  

As for treatment, if I were in your position, with lumpectomy I would consider chemo and radiotherapy RT.  Since there is breast tissue there is a risk of having a recurrence. And let's be honest; chemo nor radiation can guarantee you or me of not having a recurrence.  And in some situations, some of the chemicals or the same radiation they are using to kill one type of cancer can create another type of cancer.  It was hard for me to understand at the beginning the difference between Disease Free Survival DFS and overall survival OS.  

PaulaSJ, I am in the same situation like you.  Having a family history of cancer but being negative to BRCA1 and 2.  Maybe we have a new variant of cancer genes that have not been included in their database.  However, unlike you I had a mastectomy.  I went to see two Radiooncologists ROs and they would use the conventional tx on me and I consider that too much radiation for a chest wall, ribs, and intramammary lymph nodes.  No vascular invasion, no nodes, skin clear, clear margins and a sac with the benign tumors and one malignant tumor.  I responded very well to arimidex and shrank the malignant tumor to half its size. Then had the MX. I don't regret my decisions regarding my tx. In my particular case my oncotype score was intermediate risk, the added percentage of DFS was 8% and with RT it was 12%.  But post-mastectomy guidelines changed and hypofractionation RT was better for me with less side effects and less secondary cancer risk.  The ROs I visited do not perform hypofractionation and I opted out of RT. .  If I have a recurrence, I will have chemo; there are so many side effects ROs do not discuss with RT that it would be my last option under special circunstances.   

So, do what your heart tells you to.  Remember that decisions must be well informed and be based on the detailed information you have about your specific type of cancer.  My IDC was a rare one and of slow progression.  You have to check what kind of cancer you have, if it grows quickly or slowly, Her+, Ki-67 high or low, and the oncotype you have.  Also, ask your professional team including your MO or RO any doubts you have before undergoing any procedure or tx.  And after you make your decision don't go the way "I should have done..." or "what if I might"; that doesn't help.  

So ladies, go ahead and be happy under the circumstances.  And if you need to have a pity party, we can celebrate with you and help you get through the journey. Husbands, do not be insensitive.  Unless you want to sleep in the dog's house.  Just kidding.

Double Whammy

My choice was lumpectomy and radiation

I had a similar diagnosis, but no family history.  You might want to visit Dr. Susan Love's website or read her book "The Breast Book" (it's huge).  I would have had a mastectomy if it had been necessary, but it wasn't and my nodes were clear.   I am pleased to still have both of my breasts.   My tumor was in the underside of my breast, my surgery was actually a mini breast reduction since that breast was much larger than the other one.  Now they "match" (sort of).  I may be 70, but I truly am happy to have both of my breasts vs. having only 1.  That being said, I would not hesistate to have a mastectomy if I needed to.  I had chemo because of a high oncotype score, radiation and estrogen therapy.  I did everything I was supposed to.  The reson I suggested Dr. Love's webiste and/or book is she is a breast surgeon and has pretty strong feelings about unnecessary mastectomies.  That being said, you need to trust the advice of your physician and weigh all the pros and cons.  Our breast cancers are so individualized and we are individuals.  BTW, is radiation ok if you have diabetes?  That is something important to consider, because you have to heal from radiation if you have a lumpectomy, just like you have to heal from a mastectomy and no radiation.  I would be sure to ask about the effects of both surgery and radiation and weigh that into my decision making.

Good luck.

Suzanne

bevacqua_r

Hi

I was diagnosed in 2013 with stage 1 in my right breast and went through two surgeries and radiation treatment.  My second round was 2016 left breast DCIS.  I opted for the double mastectomy the second time due to how bad I reacted to the radiation treatments.  I was so tired from the treatments that  I couldn't think right, and I had to stop driving. Then in the last two weeks, my skin erupted, and it was extremely painful.  The mastectomy may sound complicated, but I found it to be much easier physically and mentally than the radiation treatments.  I went back to work after the mastectomy with no issues (I am a teacher), and after the radiation, it took so long to get back to a normal feeling I thought it would never get better.  If I knew what the radiation would do to me, I would have done the mastectomy. I wish you luck and healing thoughts.

PaulaSJ

Thanks everyone

Thanks to the great people in my life and the great resources available to me, including this board, I made the decision for double mastectomy with implant reconstruction. I am scheduled for surgery on April 6th.