Stage 3?

The day before my mastectomy my brother, husband, and I were visiting a gorgeous public garden here in So California.   My brother and husband had shaved their heads in solidarity, since I was still bald as an egg.  They talked me into going commando.  I wore a feminine blue and green swirl top, dangly earrings, and loads of eye make-up.  I posted a picture of us on facebook in front of the dahlias and someone commented, "you look beautiful...like a French model."

I still smile when I remember that day.

LKSHER,

I am grade 1 with a bone met, so, am stage IV. I have not had chemo, only Arimidex, Aredia and rads to the bone met. So far, so good. Hoping for the same for you.

Caryn

LKSHR, It is a difficult roller coaster . I am struggling with to being able to relate to others with my stage & age. I have been homeschooling my children the last 7 years and had my own business. Letting go of that person has been the hardest. My youngest is 9 and I lost my mom to breast cancer when she was 6 months old. I was thankful my mother was here when she was born. She is named after my mother too. Trying to convince my children that I will survive losing my mom has been hard. I am younger and treatments are better now. That is what I keep telling myself. I have searched and read on these blogs to keep my hope alive. I will add you to my prayers and your children too.

Fredntan -

Thank you for posting this. I had no idea there were so many different opportunities. Doesn't look like Stowe will work for me this year - but would love to go some time.

In the meantime I can spread the word!



Diana

LKSHER, the blatant honesty, that happened to me too and I am afraid it has become a lasting side effect, lol. I really have to watch it sometimes. Somehow I feel like I have looked death in the face, so I don't have the time anymore to be fibbing and evading things.

I am so glad you found a good shrink who can help you thorugh this shitty time. A friend of mine is a shrink, and although I only talked to him once to get a xanax script, even that was so helpful.

LKSHER, when people ask you how you are, you can answer with as much or as little information as you feel comfortable providing. 

"This has been challenging, but we're working through it and looking forward to being on the other side" is a perfectly acceptable response.  If people push for clinical details--and some will--feel free to say, "Gosh, let's talk about something else, how about them Broncos?" 

Right after I was diagnosed I actually had to excuse myself and walk away from some conversations.  "What stage are you, how many nodes are involved, what's your prognosis" are NOT appropriate questions.

This might not have been what you were actually asking, but I wanted to say it to you anyway.  It's difficult, right after diagnosis, to protect yourself from what you don't know will make you feel worse.

LKSher--if your largest node is 25 mm that's not too bad. Mine was 2 cm. Also re: adenopathy and multiple nodes, those seem to be medical terms or descriptions that are applied to a lot of situations. I am not familiar with the PET scan, but with the CT Scan and MRI, the doctor should be able to show you the shots of that area. Hopefully you can see that with the PET Scan as well. I don't think there's a way to count the nodes from the scan, but a picture is worth a thousand years to show you the extent. All said though, you aren't really going to get the most accurate info on the nodes until after surgery and pathology. Keep hoping for the best, and know that sometimes people get into Stage IV with only 1 node and some people never get into that stage with nodes in the double digits. There is just no way to predict.



What those people did regarding sending the information on your situation and the stage is just horrible, but what I have learned is that people freak out about cancer, they don't know how to handle it, and they don't know what's helpful. It beats me as to why people can't envision themselves in other people's shoes and that the information is private, personal and something you may not be ready to talk to acquaintances about now, if ever. In retrospect, I think I should have been much more direct about that, but it's hard when one is going through so much emotionally. I felt that I was forced to allowing more information to be shared at work by my boss and forced into sharing with friends and acquaintances because people started writing on my Facebook page about it.

LKSher, my friends and acquaintances really all seemed to mean well, but I got asked a lot "how may nodes" "what stage" that kind of thing.  I often simply told them that I couldn't talk about it.  The other thing I did was limit how much information was coming in.  I did my homework to find a good local oncologist, then let him guide things.  I didn't officially know the particulars of my tumor size or number of nodes, that kind of thing, until I was about 2/3 through my 16 week chemo.  I am in medicine, and although it may sound like I gave up personal responsibility by allowing myself ignorance, I really didn't.  I knew from what I was told in passing that I had an ER+ HER2- tumor, that I was stage II or stage III, not I or IV.  I knew I wanted to go with traditional western medicine.  That doesn't leave a whole lot of choices.  For me, looking at pictures of my scans would have been (and would still be) horrible.  Some degree of denial, as long as it doesn't close any doors for you, is OK if it helps you stay sane.

LKSher,

I found the questioning incredibly intrusive. It made me feel extremely anxious too, as I could tell they were 'processing my death' (and this was mostly from my sister) she wanted information that I didn't even know my self at that point.

A few days post-dx before treatment I felt completely disorientated. I soon realised however, that I was potentially 'up' for public consumption. Not all of it caring, some of it just plain nosey.

I realised I had the option to keep the details very private. That was very liberating. 

I do not discuss the details, only with my closest friends.

I hope this helps. 

LK, I am going to give you the kind of pep talk I give my kids, when I say, "Woman up." Yes, it is nasty stuff, but the treatment won't kill you and odds are pretty damn good that bc won't either.  You don't have to be positive, but the negative stuff won't help either.  Pick a doctor, a treatment plan, and move the hell forward. 

(I had BMX, 20 wks of chemo, 6 weeks rads, et. etc.  One year ago, I was bald, cold, and knee-deep in chemo. Today, just today, I started tap dance classes and I'm going to the rain forest with my family next weekend.)

I suggest that you step away from the medical reports on the weekends; take days off and return with some perspective.   Don't share info and don't answer questions. If someone asks, "How are you?" answer "Hanging in there. Any you?" Few people can resist the chance to talk about their lives

I don't know what will kill me, but I really don't think it will be this stuff. 

Elizabeth, was the back pain excruciating or was it the story that was excruciating?

I can relate to many of the stories here. Some people are asses, plain and simple. This is always the case, but it hits you harder when you are in the middle of cancer treatment.

The worst one, I think, was a dinner where I ended up between two older ladies who knew about my DX. I was bald, thin and had already had a BMX and was scheduled for an ooph, but was wearing foobs. First the two old ladies launched into all the stories they had of people they knew who had survived BC. OK, fine. Then somehow we got on the subject of BRCA testing, and one of them told me that her niece, who is a doctor in America, had told her that there are women who get prophylactic BMX and ooph. She then went on for quite a while about how she couldn't understand that at all, because what kind of woman could you possibly be if you cut out all your female parts. Gee, thanks bitch! Many people are quite stupid, and foot-in-mouth disease is far more widespread than I had previously suspected.

In terms of aggressive chemo for low stage/grade bc, more is not better! Over treatment is a problem too and carries some serious risks for minimal or negligible benefits. I think this is a very important factor to take into consideration.

Caryn