Let's check in

Willowtree1822 said:

Just got fourth round a/c

Just got fourth round a/c with neulasta and as terrible as it sounds I just felt like asking myself if the juice is worth the squeeze. This much pain is too much. I could barely move, couldn't talk. Couldn't move without help. Too exhausted to cry. Frankly crying would have hurt anyway. i know I'm supposed to stay positive. That is the key everyone says. I feel like if I complain it's a slap to everyone who suffers through this while staying positive. 

Today is little better. The muscles in my throat have eased up and I can talk and move easier. But body feels battered and bruised. Still better than yesterday. I still hurt to touch pretty much anywhere on my body. 

i do like coming and reading how others have gotten through this and it does give me hope. Even when I just want to curl up and feel sorry for myself. I havent cried yet. Once when first diagnosed my husband was upset and I was upset for him. I cried a little that night because I felt bad for him. But I realized I haven't cried over this whole nightmare at all. 

sometimes I want to cry, but then I think it will just upset others And I don't want them to worry or be upset more than they might already be. 

ughhh...even typing this makes me feel like a ninny. 

Also, Mesch, I also am anemic. Have had problems with it long before breast cancer. Mostly due to extremely heavy periods. I had ablation and it helped a lot. While I hoped it would get rid of periods all together, it at least slowed them down to a more normal monthly cycle. 

congrats to all of you who are getting through this mess and keeping your head above water! 

Thank you for the information!  I am really hoping that the endometrial ablation takes care of the problem!  I have to admit, I was a little scard when my PC told me that my bone marrow may have been damaged by radiation.  I don't really know what that would mean long term...

Kats2 said:

Any scans done?

Hi Elaine,

I'm happy to hear about the good news of you going back to work. That's an upper.

I was wondering if you had any pre-surgery scans, like a bone or CT scan done before your mastectomies? Seeing as you had one sentinel node affected, it's important to have a close look at your whole body to make sure that there is no metastisis. Having those tests done and getting a clean report is probably more important before getting reconstruction surgery at this point. If all is well according to the tests and scans, then by all means, proceed with your reconstruction plans.

I didn't have a mastectomy but had a lumpectomy  where 7 sentinel nodes were removed and 1 was positive for cancer. No testing was done after that discovery. I had 33 rounds of radiation followed by 1 1/2 years of Arimidex. No bloodwork or scans were done on me in that whole time. After the Arimidex  for the 1 1/2 years, extensive bone mets were found in my spine, ribs, and pelvis. ( Awful pain led me to my a Primary doctor who finally did the proper scans and tests.) My Oncologist and I parted ways after that.  He was NOT thorough and now I'm dealing with a whole new breast cancer issue, namely Stage 4.

My current Oncologist believes that I had mets from the very beginning. A bone scan, CT scan, would've shown this as well as bloodwork to look at my tumor markers.

I don't want to scare you, or put a damper on your positivity, but I want you to get thorough testing before you have surgery done to reconstruct your breasts. In my case, my surgeon was recommending that I have breast reduction and a breast lift after radiation. I did go to a plastic surgeon he recommended, but decided against the procedures at that point. Good thing I did!

I'm speaking from my experience. I hope you've received all screening tests to make sure that the rest of your body is cancer-free. That is SO important! 

Hoping to hear from you on this matter. Wishing you the best!  Kats2

Who was the oncologist that missed this? I got a second opinion and found an entire cancer team that I trust. What was your oncotype score?

disneyfan2008 said:

I am 9 yrs post BC-2

I am 9 yrs post BC-2 lumpectomies, radiation, 5 years of tamoxifen & total hystercomty from the tamoxifen.

I just went on 4 camping trip with summer with my whole family (3 generations and then some)

I am leaving for WDW for a week with 2 grandkids. I live in NYS and work at a special education school-as a receptionist.

My oldest daughter and 3 grandkids lives with my husband of 32 yrs and myself. We have 10 rabbits, 1 chinchilla, 1 cat, 2 dogs! ( i adopt all misfit pets or those in need of home)

Denise

AWESOME!!!!  I LOVE hearing the stories of long term survival.  I believe that I will be in that same club with all of you

one day soon.  I'm 1 year since diagnosis!!!!

Gm2873 said:

Checking in

I haven't been on this site for quite awhile, but decided to look in today. I'm still here and alive. Quick rehash of my story. 1994, Stage I in right breast. Had a mastectomy with tram flap reconstruction. Did 4 months of cytoxan and adriamycin, then 5 years of tamoxifen. Figured I had beat it and moved on with my life. 20 years later, find a lump in the left breast, only one positive lymph node, so I figured I'd be a Stage II. My onco wanted a PET, since biopsy had shown I was ER+, PR+, and HER2+. It had already metastasized to my left sacrum, so I'm now Stage IV and dealing with treatment for life. Now, when I go every 3 weeks for my Herceptin, I sit in envy of those who get to ring the bell. the Herceptin isn't bad and other than having to have my heart checked every 3 months, I'm tolerating it very well. Only some fatigue and diarrhea with it. Naps and daily bepto bismal take care of that. The main problem has been the every three weeks. My husband and I have retired, and while I'm NED, we're trying to get in some traveling before progression makes that "iffy". I'm also on Letrozol. Just started seeing a pain management doctor to see if he can help with the bad joint and bone pain that is causing. My onco and I don't want to switch drugs. It's working and we want to hold others in reserve for future use. Fortunately, from the 1st diagnosis to the 2nd, I was given 20 years cancer free. Got my kids raised, and now have 2 grandchildren. If you look on line at statistics, it says Stage IV life expectancy is 24 months. I'm at 34 months right now, and I've been NED for 24 months. I've responded well to treatment. The side effects do cause some real problems at times, but I'd rather deal with that than the alternative. I'm enjoying the fact that I'm still here and able to live a fairly productive life. I'm thinking I may even get to see my two grandkids graduate high school(they're teenagers) graduate college, and marry! That means I'm expecting to get at least 10 more years. Back in 1994 when I got Breast cancer the first time, if I had been HER2+, I probably would not have survived because there was no treatment at that time. I'm thankful that God knew I would need Herceptin later in life, and gave me the chance to wait for it. I'm just looking at my cancer as a disease that will require "maintenance" treatment for the rest of my life. No different than if I had diabetes, or heart disease, or some other serious illness. Well, earlier, I said this would be a quick rehash, so I apologize for the length. I hope those of you who are dealing with lower stages and treatment will be encouraged. I know some of you fear recurrence but maybe you can feel easier knowing my story. Reccurence can be dealt with. You can achieve NED. Life can still be good.

 

Gayle

Thank you, Gayle, for taking the time to share your story.  It certainly brings hope to those of us who are early in diagnosis, treatment, and recovery.  May God's grace continue to be upon you as you smile through each day!

peace and prayers,

Kathy

Well, today does mark the anniversary (7 years ago - 2010) when I last had hair.  I am perfectly fine cancer wise and hope to never ever see this beast again.  It's still gone and so is my hair (thank you, Taxotere).  I feel absolutely wonderful and have felt that way since I had my last treatment in December, 2010.  And I do still check in here on everyone to see if there is any input I can add.  Wishing you all a good outcome.

Suzanne

Elaine_wi said:

Oncologist

Who was the oncologist that missed this? I got a second opinion and found an entire cancer team that I trust. What was your oncotype score?

 

 

Hi Elaine,

My lobulgar cancer was so small,  .5 cm that an Oncotype score was not able to be done. This was tried twice too. So, it appears that statistics from internet sources did not recommend chemo. But I'm not happy that scans weren't done on me. Water over the bridge now. It's now believed that I had metastisis from the get go. ( de novo)

I'm glad that you have a team that you trust. I wish you great days ahead!   Kats2