Scared, need calming down PLEASE!!!

barbstitzer

Hi everyone,

I am new here. I never felt like I wanted or needed a support group, the first time around, in 2008. I had a mastectomy, took my tamoxifen, and went on with my life. But now, I"m having a local recurrence in my skin by my scar. I had surgery, and have done 19 days of radiation, 11 to go. I was feeling really positive an good about everything, and then today, my regular radiation oncologist wasn't there, the guy who trained her was. He was like "well, you have a very interesting case, I haven't heard of this before" and I had to tell my whole story. Afterwards, he said "let's beat it this time, ok?" and for whatever reason, I felt really weird about it. So I asked him "what's your gut on my odds?" and he didn't seem like it was all that great. He kind of said the right things, but I went on the Susan Love foundation and they said that 80 percent of local recurrences become metatastic recurrences. I don't want to be sick, I have two young children. We just moved to a new place not even a year ago. I'm re-establishing my live. I have friends bring me to every treatment so that they can take me to lunch after and I can pretend that we're just having lunch with a small pit stop.When I went in for my pet scan after this surgery, they said that I had mets in my lung and liver, and then they gave me some other test and said that it was just local, but I can't shake the thought that they were just placating me and that it has already spread. I'm so scared. I have a terrible feeling about this. Does anyone have any positive thoughts/research/anything? Please?

chrissyb

Hi Barbe and welcome to BCO.

I hear the fear in your post and just want to reassure you that even if your BC is metastatic it is not, I repeat, is not necessarily a death sentence. There are many women on these boards who have metastatic BC and still live near normal lives for many years........I was dx metastatic six and a half years ago and I'm still living a full and happy life.

Regardless of the Radio Oncs opinion, it is still just an opinion and not written in stone. Try to relax a little and have a full on, frank discussion with your doc as to exactly where you stand with this disease so you know what path you need to take.

Always remember, one day at a time, one step at a time.

Love n hugs. Chrissy

barbstitzer

Thanks so much Chrissyb, I don't know why I have such a bad feeling about this, but I just do. I was toodling along just fine until today.

chrissyb

Barbe we all get 'those' feelings and they shouldn't be ignored. Sometimes we need to accept that we are not as strong as we think we are and need a hand to hold and a shoulder to lean on just to help us get back to where we were.

BCO is wonderful for doing just that. The women here speak from experience and with love as we get exactly what you say and feel.

Love n hugs. Chrissy

barbstitzer

Chrissyb, may I ask how you found your peace?

dlb823

Barb, I'm so sorry you're dealing with a recurrence, plus having such anxiety about your future. Chrissy has given you some excellent advice. The only thing I want to add is, you sound a bit tentative about your PET scan results and then "some other test" that showed something different. I would just urge you to maybe get more complete information on exactly what was seen that was at first concerning, and exactly what test they did to come to a different conclusion. Knowledge is power, and it will be very helpful in dealing with the fear and what-ifs if you know exactly what was seen and what additional test they did to rule out mets.

The other thing that jumped out at me in your post was the doctor saying he hadn't heard of a case like yours before. Was he referring to a recurrence in a scar line? If so, I would be uncomfortable with that too -- not because your case is particularly rare or worrisome, but because it sounds like he may not have much experience dealing with breast cancer, because I don't think a recurrence in a scar is as unusual or rare as he's making it sound.

I don't know where you live or where you're being treated, but if you are still concerned after you finish your rads, perhaps it might be a good idea to get a second opinion re. your future risk from a highly experienced breast cancer oncologist -- the kind of onc who only deals with breast cancer 24/7. I think someone like that who sees far more bc patients and recurrences could help you understand if you truly are at any greater risk, and if you are, perhaps do some regular follow up to help put your mind at ease. Just some thoughts... Hugs, Deanna

chrissyb

Barbe I think my peace comes from the knowledge of acceptance, knowing I cannot change anything and making sure I participate in living what life I have not just letting it pass me by while I worry about what is coming in the future.

One day at a time, one step at a time.

Hope this helps. Love n hugs. Chrissy

barbstitzer

thanks CA, I know that my team are regarded very highly here in Ohio, but I will ask around. One thing about researching is that it uncovers scary stuff, now I'm trying to research so that I can find stuff to help me win:

barbstitzer

Chrissy's, I love that philosophy and plan to incorporate it into my life. Thank you!!!!!

camillegal

Barb this post caught my eye and I think these ladies gave u excellent advice and do whatever u can whether is seeing more Drs. or asking more questions. And if u need to ask one of the Drs. for something to take to calm u or help u sleep if u'r having a problem--maybe not forever just to get thru this rough time. I hope u continue to come here and find the posts that u can learn from and meet this wonderful group of ladies that totally understand all the feeling u are having. It helps so much.

TectonicShift

.

cider8

for me, I feel like knowledge is power. Do you have copies of your reports? I would re-read my reports so I felt I had a good understanding of my body and my treatment. I would want to know the PET results and what test was done to negate or clarify PET results and why no mets was determined. I write down questions and ask for answers I can understand. Local recurrence on scar line doesn't seem odd to me. I would want to know just what is unusual about my case. [My own case has been complex!] I learned a lot. I was never offered stats and I never asked. I've either got cancer or mets or I don't . Today: I don't. I'm alive today so I get busy living. Hugs to you