BC Tea-III gals will understand

jennyboog · October 2011

A local business host this BC Tea every year and with the help of sponsors they provide lunch and have speakers, etc. I was invited and this was my first time going. I was the youngest person there...seriously I was surrounded by older ladies. No offense to anyone but I sat at a table with ladies all in there 70's. Which could have been great news but after talking to them all I realized I was the worst as far as stage also (they were 0's and 1's). One of them even had the nerve to say, "this BC thing isn't as bad as they make it out to be, they cut my breast off and I've never had anymore problems, your fine too, you had surgery" I realize she was 72 and uneducated about this whole thing but I was a bit taken back by everything. The whole event felt like it was about these sponsors selling their products and these women getting their free lunch and winning doorprizes. I went hoping to connect with others and maybe get some info, it was such a waste of time until I meet this one lady who was a 30 year survivor, she told me she wasn't even 40 at dx. She had 17 positive nodes removed but she didn't remember any other details. I realized then I was meant to go and hear her story and pass it on to my fellow III's. I hope that will be all of us 30 years from now not remembering any of the details from this. Another story of hope.

stephanie82510 · October 2011

I have not found a "group" either. My surgeries were JAN/FEB 2010. You and I have a serious case (I remember being told that before 2005 that Stage IIIc was considered Stage IV) and would like to talk to women our age dealing with all life has to offer... I just started on this site since being alone in my head has recently not been a good thing. Jen, the story you shared is one I needed to hear today. Thanks. S.

NancyD · October 2011

Jen, This has been a week of discovery for many of us. I just found out my new nextdoor neighbor (I moved in April) is Stage IV after over 30 years of being a survivor. She had her first bout with bc 37 years ago. She's been living with mets for four years. She's in her 80s now.

Our conversation was brief, so I don't have much more detail about her case other than she had a mx and did not have chemo or radiation, so it must have been a much earlier stage than ours and no nodes involved.

Still, I'll take 30+ years.

krcll · October 2011

Part of the reason we don't hear more long-term survival stories of stage III women isn't that it goes badly with us, but the fact is that there just aren't that many of us that are diagnosed at stage III. I recently read some statistics for the number of women diagnosed with breast cancer in Norway (population almost 5,000,000) divided up by stage. On Dec. 31, 2008 there were 20,361 women with stage I, 12,920 with stage II, only 773 with stage III and 346 with stage IV BC. That really surprised me, because I somehow thought that the stages would have somewhat equal numbers.

It shows how important it is to share the wonderful long-term stories! Thank you Jennifer! We are a small and select group of women and it is good to stick together ;-)

AnacortesGirl · October 2011

krcll -

You're stats really surprise me. My mom and I have talked about for years how we felt our Norwegian ancestry made us more vulnerable for cancer. Although both my maternal grandparents are from Norway it's my grandfather's side that appears to carry the BRCA gene. Although I've got to say that we have his family tree from the early 1400 and onwards. Most of the people lived exceptionally long except for the shorter ones that died from different cancers.

Jenny -

I've found that going to get-togethers is not very rewarding for me. Like you found, most of them are older and were dx'ed at a lower stage. If they even know the stage. I have been dumbfounded with the amount of women that haven't known their stage, their BC type, their chemo protocol or anything else about their cancer. They just went to the onc and did as they were told.

However I would expect something different if our town had a support group. But since we don't -- I haven't had a chance at experiencing that type of get together.

Elizabeth1959 · October 2011

I didn't realize I was in such "select" company. I belong to a Y-me young people support group which is lead by a facilitator. There are people in the group in their 20's and 30's as well as people my age - 52. I went to the meeting last night and found it quite supportive. I especially like seeing the survivors who are 6, 7 even 10 years out. I think it is meaningful to lend support to the newer members who are just beginning this journey.

Jennyboog, if I went to that luncheon, I would have been very unhappy. I also can't understand why people don't know their stage, treatment options etc. I have no interest in silly platitudes or door prizes. Like you, my goal is to live a long life.

Elizabeth

gillyone · October 2011

Anacortesgirl, there was no support group in my small town either, until I met an acquaintance I hadn't seen for years in the chemo room, so we started a group with the backing of our hospital. Perhaps something you can consider?

jennyboog · October 2011

I have the same problem with people I have met. I start asking them questions about their dx and they look at me with the "duh look", they have no idea what I'm talking about. I can't imagine not knowing my stage or ER status, maybe wearing blinders works for some people. Most I meet are older and they just do what the dr says and ask no questions.

Great story NancyD!

MaxineO · October 2011

Jenny-Thanks for a great survival story. I would have felt the same. My mom had bc (stage I) five years ago, and she said, 'you have your surgery and radiation and never think about it again!" I wish!

krcII: that statistic is a good thing; it's great to hear that the vast majority are caught early. I hope that graph keeps moving to the left!

Maybe the 'younger' cases (I was 38 at dx) worry more because our bodies are still pumping out massive amounts of estrogen? There are more years for that bc to come back! (I read somewhere that the overwhelming majority of bc cases first occur over the age of 50--something like 85%). I don't know. I think some people just don't want to think about it, so they don't learn their stats, etc.

I do appreciate connecting with you stage III ladies!

krcll · October 2011

MaxineO- I also think that the internet has completely changed our ability to find out information about our own diagnosis and maybe alot of older people are not as comfortable using this resource. That said, I have a friend that is my age (50) that I had to ask her "did you have to continue with infusions for a year?" and "are you still taking a pill?" to find out her ER and HER status. She had never heard of those things! I think alot people are afraid of information, while I feel more in control the more I know. Each to his own :-)

Latte · October 2011

thanks for this Jennifer! I also don't understand how people don't want to find out everything they can about their specific cancer and treatments, but I hear it all the time, people who don't know stage, grade, future tx plans, etc...

when my rads nurse was filling out the initial intake form with me, one of the questions was "How involved is the patient with their treatment program and plan?" - and the nurse said to me - you're way off the top end of the involvement scale, right :-)

Outfield · October 2011

Bothers me so much when people make assumptions about my prognosis based on what's common. A doctor kind-of friend of mine told me over the telephone (dismissively) "Well, it's proabably just DCIS." I haven't been able to speak with her since. I know she didn't mean anything hurtful, but it really was. Oh I hate it when people tell me I'm going to be fine. It's just negating the reality of my experience, which is living with the fear that my locally advanced cancer will come back and kill me before my kids are grown.

AnacortesGirl · October 2011

gillyone -

I have the name of the local patient navigator and I'm going to contact him about a support group. They didn't have that position when I was dx'ed so I don't know what resources he offers. I don't care if it's an all cancer or just breast cancer support group -- I would attend either one.

Outfield · October 2011

AnacortesGirl and Gillyone, I think keeping open to an all-cancer support group is a great idea. I do live in a metro area, and the group that has worked best for me is an all-cancer group. I found at the BC-specific ones I was painfully jealous of the women with DCIS or even stage I/II. Horrible to say that. I know if I'd gone from thinking I was fine to having to deal with DCIS it would be a huge thing, but I couldn't help myself. While I can't relate 100% to their experiences and vice-versa, I have a huge amount of losses and concerns in common with the participants with completely different cancers. Good luck. When it works, it's very helpful.

kathleen1966 · October 2011

Just want to point out, that some forms of stage III cancer used to be stage II cancer. They changed the definitions, criteria. By the "old" criteria", which was only maybe five years ago, I was a stage II. After my surgery, my surgeon and I sat in her office for over half an hour trying to figure this out. She was insisting that I was a stage IIIa but her book was saying stage II, then she realized it was the "old" book. Then she left, got newer stats and wa-la, I was a stage IIIa. I also run into women who don't know much about their cancers. One was mis-diagnosed for over a year at age 26 until she insisted on having the "cyst" removed only to find out it was cancer. She had chemo, radiation, etc and is now in her late 40's. She does not know what stage she was or even if she was ER+ or ER-. She said she never wanted to know all this stuff. She just did what they said, got it out and went on with her life. Another friend was stage III (going on year 10 ten for her) and she also does not know her stats. Add my neighbor down the street (diagnosed at age 42, both breasts, had chemo, rads, doing well over 20 years later)...also doesn't know her stats...and a neighbor to my right....diagnosed at age 57...doesn't know her stats (now 85)...and the other neighbor down the street diagnosed in her forties....no stats (also 20 years ago). Yes, there is a lot of cancer on my street and also a lot of survivors I know!

Kay_G · October 2011

Outfield, thanks for posting, I feel really badly about it, but sometimes it upsets me to hear concerns of women with lower stages. I am sure if that was me, I would be just as concerned. I find myself very jealous of women who have caught the bc earlier. I guess I just wish that was me. It is nice to have women who understand that to talk to.

I have to admit I am one who didn't ask the onc my stage, but with 3 tumors, the largest being 4.5 cms and "multiple" lymph node involvement, I know it is late stage 3. I intend to get an official answer from my onc in 3 weeks when I see her, I hope I don't chicken out again. Having you all be brave enough to hear the dx makes me feel stronger.

Outfield · October 2011

Kay,

I actually didn't ask about it either until way after my diagnosis. But I was able to infer some things about the treatment that was offered to me and my physical exam/MRI before the surgery - I knew I'd be either at least IIb. I got braver after time and finally had a conversation with all the stats. I could not have handled it at the time. I've never read my path report, never filled in the data to have a tagline on these forums. I keep trying to tell myself that what I do and what happens to me is what I do and what happens to me, the label that an organization puts on or whether I hide from knowing it isn't going to change the fundamentals. So I am doing every single little thing I have ever heard of to try to improve my chances.

I am so glad I'm not the only one who has been jealous. I feel so small about that.

208sandy · October 2011

I am Stage 3 and 65 years old and know lots more about my cancer but prefer not to broadcast it to everyone, I am also somewhat computer literate so I get a little ticked when I read things about us "older" women who don't know anything about our diagnoses or about getting information on the computer - guess what many of us were working with computers for over twenty years before we retired and still have them at home - just venting here to stay "don't use a broad brush to label us 'older women'" - we're all in this together no matter what stage or what age!

Anonymous · October 2011

Jennyboog: Speaking of all these stages, what exactly made you stage 3C? I find it interesting that some of our sisters here had smaller tumors than I, and same hormone & HER status as mine and less nodes positive but are stage 3. When I went back to read my surgical report, my 6 cm tumor had both IDC and lobular areas, and all grades 1-3. I think knowledge is "power" but I certainly understand the women that want to just put it out of mind and move on. I think oncologists are some of the smartest people, because they have to be, because cancer is not just one disease, they say it is many due to the different factors of each.

jennyboog · October 2011

@shelly56....I'm IIIc because my intermammary nodes were + with cancer also, my largest tumor was 5x7 and had many +LN not sure exactly, I did neoadj. chemo....that's also what my path report said Smile

This was bothering me so I edited to add...

Of course nobody wants to get cancer of anykind, whether you're 8 or 80 but a 70 year old dx with DCIS and a 34 year old dx with IIIc (who's youngest baby is 18 mths old)....is no comparison, I'm sorry. Yes, we're all in this together, we're all scared and all dx with BC but it's apples and oranges, they're all fruits but different kinds and really other than being fruits they have nothing else in common. Age and stage do make a difference, they're 5 year survival rate is 100% mine is 54%, they didn't do chemo and they've seen they're kids grow up. My younger age alone puts me having a greater chance of a reoccurence and dying from BC. Maybe it's me being jealous or even a bit angry but it's how I feel so you can't lump us all together in one big pot.

Diagnosis: 7/28/2010, IDC, 5cm, Stage IIIc, Grade 2, 5/16 nodes, ER+/PR+, HER2-

krcll · October 2011

208sandy- I'm the one that made the comment about older people and the computer and I want to apologize about that. I was using a "broad brush" as you say. In truth, I was thinking of women older than you- more like my mother who is 83 and doesn't even dare turn on the computer. I am now 50 so 65 doesn't seem old enough to qualify for being an "older person".... But you are right that there are lots and lots of older people googling away on their computers, too (just not my mom!).

Anonymous · November 2011

Jennyboog: I feel now like I should have had the NEOadj. treatment to shrink my tumor. But the prep-surgery scans didn't show a tumor any bigger than 2 cm. The actual size after surgery was found to measure 5 x 6 cm and they did not have the option to leave it alone and not remove it. Let's hope we all got the best treatments of the day and pray for better ones on the horizon. Actually, we need to find CURES not just treat BC, and hope it doesn't recur. Stay strong!

Shelly

BC Tea-III gals will understand

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