Stage 3?

sbelizabeth

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 love the stories. They really help.



Thanks again, everyone. Interested to find others with Grade 1 cancer and hear their experiences. I seem to be not early stage, but low grade. How should I do that?

exbrnxgrl

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

LKSHER

Thank you, Caryn. Now I am freaking out because I was feeling around my lump area and underarm and found a lump in my underarm area that I hadn't felt before and I don't think they did either upon examination. I swear I had no node pain or lumps until they started all these biopsies. Of course, I know the FNB was positive for cancer in this underarm, but I was hoping it was small because they had trouble finding it on US to do the biopsy, but now I feel this big lump! My prognosis just seems to keep getting worse and worse. I can't enjoy anything and all I can think about is that my time must be quite limited.

Juzlyon43

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.

mary625

I too went through the diagnosis getting worse and worse. Please note that I used the word "diagnosis" not "prognosis". Yes, it is very difficult. Out of the blue and only 8 months after a mammo, I had a huge tumor and a palpable node...went from that to the FNB that was positive...to the MRI that showed potential problems in the other breast...then chemo...then biopsies of the other side since the MRI was still showing something...then to surgery and 10 nodes still positive. But I am here to tell you, it WILL get better. It has gotten better for me. I am doing well and plan on that lasting a long time. It really helped me to read the stories here and concentrate on knowing that it will end eventually.

LKSHER

Hi , everyone. I have reread my posts and all of yours. Wow. I have been awful sick since finding this news out and I have to say thank you again for all your kind responses. I hope someday I will be able to help other people the way you are all helping me. I am doing mildly better. Tentative surgery date set for March 12. Although they may move it up. I went to a psychiatrist today who was also dx as Stage 3 a few years ago and is doing great. I am thinking of starting melatonin at night and changing from the little bit of Xanax I have been taking to a bit of vistaril. My husband says I have gotten bossy again, so I must be feeling a bit better. I feel more angry and witchy and blatantly honest (like i say whatever comes to mind) in the last couple days instead of just plain defeated and sad. I have many moments of hopeless thoughts, but they aren't my only thoughts like they were a few days ago. I just wanted to check in and I hope everyone is doing well!

fredntan

Hey registration for a breast cancer retreat is opening march 1. Google bc retreat stowe vermont.



I always wanted to go to one. Wanted to do one when tx was over, but never found the time.

dltnhm

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

dltnhm

I'm on my phone so not certain if this will post as a link - but it's a resource for retreats and camps that I found when I googled as Fran suggested.



http://www.touchedbycancer.org/survivorship/cancer-retreats/

Momine

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.

hopefour

LKSHER..thankful you are finding your footing in this BC journey. It is for sure an emotionally unsteady journey with waves of fear and anger hitting you with no notice. There are some of us that need to go through "valley of death" before we can begin to see the "light of hope". I met with a woman( stage 3) just before Christmas who was in the "valley of death" stage. She thanked me for not wearing all the pink bling, telling her to be hopeful, allowing her to cry and facing with her the possibility of a negative outcome in this fight with BC. I gave to her what I so very much needed myself in the beginning. But, now just this week she came to my home gathering all my books, articles and looking at my supplements concerning BC...she is now seeing the "light of hope" and is reaching for it. She has finished active treatment and is researching what she may want to do further. 

Would encourage you to seek out some of the great insight given here...especially about trails  TectonicShift shared...lots of knowledgeable woman here.  I am also a grade 1 which seems to be good and bad. MD Anderson said that if it recurs that the recurrence time for grade 1 would be between 6-8 years...but it's cancer so who knows really. Their Integrative Onco, Dr. Lopez, said that exercise was of great importance and has the stats to show it reduces recurrence as well as eating lots of whole veggies.

The waves of fear still hit me from time to time and I am surprised at their timing. I kept myself numb for the first year just to get through, but now allow myself to hope and when the fear comes it leaves faster. Been out to my son's baseball games and have to share that I love feeling my HAIR blow around in the wind...this place you are in will pass, you will be different but alive and your HAIR will be back and blowing around in the wind too!! 

LKSHER

Thank you. It's so nice to be understood.

LKSHER

So I accessed my records today and this is from my pet scan. I already know that there is cancer in both breasts and I knew I had a node positive on left side, but this makes the node situation sound pretty bad. It said 25mm metabolically active in left breast and at least one node was pretty big as well, according to other reports and tests. Every time I start to feel a little hopeful, I see something like this. I just keep rereading the multiple node success stories. Being a grade 1, pretty sure all of this has been cooking for quite some time. What if I have positive nodes on the right, too? What am I supposed to answer when people ask me how I am?



Metabolically active left breast mass with multiple metabolically

active left axillary lymph nodes consistent with adenopathy.

Calcifications are noted within the right breast, without evidence

for increased metabolic activity. Some breast tumors exhibit very

low FDG uptake, hence, continued followup with mammography

recommended.

sbelizabeth

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

Sounds good! Thank you! You wouldn't believe some people.....even though well meaning. Oh wait... Yes you would!

An email went out to 66+ people in my son's travel basketball club describing my stage (which we don't actually know until surgery) and it said double mastectomy and just sounded all gloom and doom and grim. Not to mention talking about me like I wasn't

even here anymore. I cried all day. They were all being asked to chip in for a new vacuum (my husband had mentioned in passing that ours had broken). The whole thing was just awkward, upsetting, and in poor taste. My friend set it all straight and then someone replied to defend the first email. It was just so insensitive.

Also, apparently I should be excited about my new perky boobs that I won't be able to feel that I probably have to wait quite a while to get while I am fighting for my life....now for the rest of my life??

I sure hope those nodes are mostly swollen from the damn biopsy and they aren't just pure cancer. Or it they are, that all this works and gets rid of every bit of it.

mary625

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

Thanks, Mary. You ladies always make me feel better. The 25mm is what lit up in my left breast even though the lump I feel is much bigger....I have pretty much known the whole thing isn't cancer because I have had a large lump there since I was 14. It's just bigger now and harder. The node was 1.5cm, I believe. It said scattered something, something meaning scattered cancer in the node they biopsied in the FNB. The right breast that didnt lite up on the scan, did turn out to be IDC, too.

Outfield

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.

Momine

Outfield, I also took the info in bites. It was actually my surgeon who suggested it, because I told him that I did not want him to fib or make up fairy tales (common in Greece, to "spare" the patient). He told me that was fine, but said that in the treatment phase, he was not going to volunteer info I had not asked for, because in his experience there is a limit to what patients can process and, as you say, the choices are fairly limited if the cancer is advanced and you are going with standard treatment.

I also realize now that I blocked out stuff from my path report, for example. I dug it out the other day and that was the first time I noticed that I had "extensive" vascular involvement. Yeah me!

But I am pretty much done freaking out over it. I am still here. I feel fine. As long as that is the case, that is really good enough. If one day it is no longer the case, then we will deal with it. I will be pissed and scared, but I will deal. It also seems to be such a crap shoot whose cancer returns and when it returns. Some women have really early stage and still get mets, other women have advanced cancers, yet roll on happily for decades. I take my femara, do my exercise, watch what I eat within reason and that is really all I can do.

wintersocks

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. 

     

exbrnxgrl

Keeping the details of our disease to ourselves, or not is completely up to us no matter what ANYONE asks. We may have to take some time and practice how to deflect unwanted queries, but we decide who gets what information.

Peacock

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. 

sbelizabeth

Ha ha ha ha...hey, Peacock, that was great.  Tap dance?  I've always wanted to do that!

A year ago I was in the same state--almost finished with chemo, bald as an egg, and wearing hats everyone so my head didn't freeze solid.  At a party, a friend's husband put on a look of deep concern and said, "How are you feeling?" (And I know most of us know the tone of his voice.  Like, "I see you're not dead yet, but it looks like it's getting closer.")

I said, "I'm fine, thanks, and how are you feeling?"

And he launched into his excruciating back pain story.  You're absolutely right, deflecting the pity face with concern for the asker works pretty well.

LKSHER

Thanks, everybody. I enjoy all the different personalities and storytelling here. I do have a doctor (team) and a plan and will be moving forward soon whether I am ready or not.

hopefour

LKSHER,

so agree with all that has been shared with you...such wise woman here!! I think  also when you have children it is important to protect them. My son was in a wonderful situation with lots of focus on him and his baseball team while I was going through chemo. I decided to tell none of the parents of the team mates as I wanted no attention... as well as allowing my son to celebrate all the baseball events without talking about his mom's BC.  Newspapers, T.V. news and ESPN were all covering the events and I so didn't want my "tragic story" to be apart of any of this. No one even guessed as I had a wig that was much like my hair. Sadly, I did have to leave and fly home for treatments and miss some games. A year later I did share with the parents what I was going through at that time and each were so understanding and said they would have done the same. It's your story and yours alone to tell when you feel it is or isn't the right time.

I also wanted to share with you that I received a second option in regards to treatment for my grade 1  BC. My home town onco wanted to do a less aggressive chemo treatment because it was grade 1...I went to MD Anderson for a second option. They recommended a much more aggressive chemo treatment. I went with MDA chemo program. Just sharing this as it was my experience that grade 1 had different options concerning treatment due to it being so slow. 

Momine

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.

LKSHER

These stories and all the support are much appreciated.

exbrnxgrl

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

Angie57

LK - last year at this time I was unaware of what was to come. I had a clean mammo in Dec of 2011 so I never thought a few months later I would find a lump. In a short period of time I had Stage III and was as terrified as you are. I didn't think I'd get through it but I did. I had surgery, finished chemo, radiation and am now on hormone treatment. Stay positive and allow yourself to let others help. The next few months will be tough but you will get through it and next year at this time you'll be writing to someone giving them your support. You are not alone........You will be in my prayers......