Stage IIIC, worried, with a question for Stage IVs

Anonymous

Hello to my Stage IV Sisters. I'm your next-door neighbor with Stage IIIC and lots of node involvement. How many of you were Stage III before the cancer recurred? And of those who started out in Stage III, how long was it after you finished your treatment before the cancer showed up elsewhere?

And did any Her2+ sisters here receive a full course of Herceptin, yet still wind up with metastatic disease? (I'm Her2+++ and Grade III)

Suze35

Windlass - I think this is such a difficult question to answer, because we are all so different - every CANCER is different, and it is impossible to predict what will happen.  That said:

I am triple negative, was diagnosed IIIA September 2010.  It progressed to IIIC while I was on chemo, so I had more cancer after chemo/surgery than when it was found.  I was clear from distant mets for 7 months (but still had local disease), and was re-staged with liver/bone mets exactly one year to the day I found my original lump.

I was never truly clear of my cancer, and was probably very very early stage IV when I found my tumor.  At the very least, the horse was clearly out of the barn, and the chemo I had did not work.

Best wishes to you.

Lauriesh

I did a full year of Herceptin, and was only stage 2, and now have liver mets. diagnosed 5 years after initial diagnosis.

Laurie

radiant

Windlass:

This is actually a VERY smart post on your part. I was Stage 3C 5 years ago, Er+ and Her2++. I did FEC - 7 rounds, mastectomy - clear margins, TCH 4 rounds, and then 1 year of Herceptin plus 6 weeks of intense rads. I had a recurrence 17 months out, then mets 1.5 years later from the recurrence. Here's my story . . .

My onc BLEW it. I had not been sick b4 so I did not know that I NEED TO BE on top of everything. YOU DO w/advanced cancer. I would follow your labs religiousily and see if any of them turn out to be true markers - ie, tumor markers and liver enzymes. FOR ME, the true lab that I found out the hard way was dead on is:  CEA. PLEASE make sure you get scanned OFTEN - like every 3 months, maybe 4 once you get to NED. You are on TDM1. You have a phenomenal chance of being cured. You are getting new drugs that I did not get, and still have not gotten ;-(.

I went 1 year w/out a scan, and watched a CEA climb (I did not know what a CEA was). It was only 5.5 but that mean recurrence regionally to me. Had I found it much sooner via a scan sooner, I probably could have stopped the madness. With my recurrence, I went to her2+++. 1.5 years later it went to the liver, and that's where I am today. SO . . . although the chemo has been tough, tough, tough it is keeping things down and stable. I live for the day I get to go on tdm1. That feels like my saviour to me.

I am NOT trying to scare you - just trying to say be super vigilant at stage 3C. After you get to NED, had I known now what I know today, I would of 86'd work, just done something low key w/bene's - and done major alt detox stuff - including probably being on intervenous vitamin C for a long time. I'm on it now, w/chemo, and it's pretty amazing stuff. The University of Kansas is conducting a phase II NIH clinical trial on IVC - you can google it. I would have also found a phenomenal naturopath once I got to NED to help me stay NED. I would have worked very hard at keeping my body NED.

Hope this helps!  w/tdm-1 you are MILES ahead of the pack already.

 - Kim

mom2twins34

Sorry to jump in here, but wanted to say thank you so much for posting this, Windlass!!!  As a fellow 3C girl, I have asked this question so many times in my head...

And, radiant, though it wasn't meant for me, I wanted you to know how much your post impacted me--I will read your response whenever I dismiss my symptoms/test results and try to reassure myself that the doctors (and their wait & see approaches) know my body better than I do or that they care as much about my survival as my children and I do... Thank you for this!...  

Anonymous

Thanks, Radiant. I read and re-read your post, and will be sharing it with my husband. AND taking your advice to heart.

Mom2Twins: I also had a huge"area of involvement" that I was told measured 11-13 cm at one point. "Skip lesions" they called them.

By the way, the moderators moved my post out of the Stage IV board, since I was apparently in the wrong place. I hope this post continues to get read here.

mom2twins34

Thanks for the info, windlass...  I haven't heard this term before--sounds more technical (and easier to google!) than "wow, your breast is just full of cancer!"   :-)   

I hope your great post continues to get read & responded to, too!

ma111

This is a good question for john Hopkins. http://www.hopkinsbreastcenter.org/services/ask_expert/

Anonymous

I guess the Stage IV gals just really don't want us posting on their board. It creates a sense of separateness that is kind of heartbreaking.

PlantLover

Windlass ... I don't know if that's why you aren't getting many responses but I do have to say I really don't understand those that don't want others to post on their stage specific forum. Those feelings go  beyond our Stage IV sisters.  I've seen the topic on the Stage III forum.  I was new here and that's when I realized how some felt about it.  I was shocked.

I'm Stage III and will always welcome anyone to post on the Stage III forum as long as they are trying to be supportive & or asking for help.

It does seem like it upsets some when folks post outside of their "place". Honestly, I think that philosophy keeps people from building relationships and sharing/asking things for fear of posting in the wrong forum.  Sad!

Alpal

I certainly hope that none of you are judging all Stage IV girls because this post was moved. Yes, having lower stage gals continually post "Could this be mets?" gets tiresome. Since this forum was established, that doesn't happen much anymore. And, that certainly doesn't apply to Windlass's question. Perhaps the mods are trying to be proactive? I don't know.

Windlass - sorry I can't reply to your question. My initial diagnosis was Stage IV. Good luck to you. Radiant's reply seems spot on!

PlantLover

Oh my gosh ... I didn't even realize it had been moved.  Wow! 

Suze35

As a Stage IV member, I personally don't have a problem with posting cross-boards, and I answered the initial questions when it was still in that forum.



However, I would like to respectfully point out why this post may have been moved. The OP was asking very straight questions that basically requested we detail our progression to Stage IV - how long were we Stage III, when did it progress, did we take Herceptin...? I am not sure what the purpose would be knowing this information from us - we ARE Stage IV, and the details of how we got here don't really have any relation as to whether or not the OP will also progress. So if we answer the OP, we are simply relaying our stories, and dredging up memories without really being able to offer any advice. We don't know if anyone's disease will progress, and our journey will never be the same as anyone else's.



As Radiant pointed out, yes, it is very important to be vigilant. But even vigilance doesn't stop this disease, as I went from a clear abdominal CT in July to extensive mets in September.



I in no way want to be unwelcoming, as I know the fears of being so close to Stage IV. And I think if we can answer questions and give concrete support, the Stage IV sisters are wonderful at doing so. I think this particular topic, however, is just difficult to respond to, as more of a "poll," one that can bring up painful history without allowing us to provide any comfort. Again, every response from us would be, well, we DID progress.



I hope I didn't offend anyone. It isn't my intent.

reesie

Fyi I didn't respond because I didn't progress from iii to IV, I started at IV. I did respond to PlantLover's post on the Stage IV forum.



But I don"t think it's a question of not wanting others to post on that forum. As Coolbreeze pointed out these questions feel like someone of an earlier stage is asking us how do I avoid being you. What can I do to avoid the progression you had. That can be overwhelming for someone who did progress because it appears to say what did you do wrong so I don't do it.

I know that's not what is meant but....



Others (caregivers, earlier stagers, etc) who post encouragement, specific treatment questions (I.e. Sincity Dealer - hope you don't mind me using you as an example), condoleces, etc are always welcome.



Questions from caregivers,spouses, children, friends etc that ask how do they cope with their loved ones dx are hard to deal with because they are just reminders to us of the hardships our loved ones are going through.



There's a fine line but I think we can all post everywhere but just be cognitive of the post and respectful of each others feelings when deciding where and what to post.

Anonymous

Thanks for all your feedback and thoughts. Reesle. I can see how my question could be perceived as "how can I avoid being you," and why that could be taken as an insensitive question. I'm sorry if you took it that way and found it hurtful or inappropriate.

I think we are all just trying to learn from one another, to understand what the journey ahead is like, and to navigate the best road to travel down and make the best of this awful disease we have. So asking my Stage IV sisters what I might expect around the next bend, since they've been there, seemed like a pretty standard question.

I've had women who do not have breast cancer come out and ask directly how they can "avoid becoming me." I'm not offended - in fact, I welcome a chance to respond to them, since there are a million things I know now that I didn't know then, things I would have done differently, changes I would have made, wishes and dreams I might have followed differently, etc. (And of course, I always have to conclude by saying "In the final analysis, I really don't know. Sometimes cr*ppy things just happen.")

When I posted my question, I was looking to connect with women who feel the same positive way I do about offering advice and support, and hoped they would be willing to share their experiences. Who knows, if even one of those replies did help prevent me from developing a recurrence, wouldn't that be a good thing? I know I'd sure leap for joy if something I offered helped prevent another woman from winding up in the hell I've been in for the last year.

ma111

Windless, I do not think anyone cares that this was posted on the stage IV board. Most just cannot answer your question, however, the hopkins site can professionally answer your question. Most stage IVers start off that way or were earlier stage. Any stage can progress to stage IV.

You actually have had a lot of responses compared to some I have seen. Do you ever go and look to see if you can respond to the low number one pages and pages back.

Naniam

Windless, 

I wasn't sure where to post the other day either - I went to not diagnosed with mets ----- forum.  I wanted some answers to questions about chemo ladies were on, just being scared. My oncologist had told me he feels this is cancer; the radiologist read the reports as metastatic disease but I am scheduled for a bone biopsy on Monday.  I felt I was truly Stage IV, but hadn't had the bone biopsy yet.   I had some wonderful women reply to me and offer support and advice.

I wanted to share with you also that I was Stage II, I had no node involvement.  I am 6 years 3 months out from my original diagnosis.  Now, surprise, I have lesions in lots of bones.

So, I'm sure your chances are higher because you are a stage III but here I am, Stage II, no nodes.  How and why?  I just wish there were answers for all of us to understand this disease better.  I never expected to be here and my oncologist was quite surprised too.   I find it all strange and confusing - 6 years later.  Lets just pray that you are one Stage III that never finds it has progressed beyond that stage. 

Blessings and hugs,  Brenda 

Anonymous

Thanks for responding, Ma111 and Brenda. I've said a prayer for us all!

*Hugs*

lulubee

Windlass and all,

What we Stage IV sisters have learned from one another's stories is that there's no rhyme or reason to this disease, and no way to know what is coming next.  

Ever since I went directly from Stage I NED to Stage IV, I find I do not have the heart to tell my story anywhere on these boards anymore except in the Stage IV forums-- out of compassion for the lower stage ladies. I think when we Stage IV ladies engage with those of you who still have a chance to LIVE through this, we feel an urge to protect your hearts from the heaviness ours now must carry.  We would all urge you to be fierce about protecting your hope-- and listening to our dark stories is not likely to help you keep your head in the light. 

Honestly, the only advice I have to give you is that I regret every single cotton-picking minute I ever spent at Stage I worrying about what was coming next.  I wish to God now that I had every one of those minutes back.  I would spend them playing with my kids, smiling at my husband, holding babies, and eating lots of pie on picnic blankets with all my best beloveds.  

I really am sorry if we Stage IV gals seem clique-ish at times.  It's largely because we share a peculiar wisdom that we have gained while walking through the valley of the shadow of death.  And that wisdom has made us abundantly compassionate and protective toward women who haven't had to join our clique.  We hope you never do.  We want you to LIVE.

Peace to you-- 

~lulubee 

Anonymous

*crying*

(...thank you)

ma111

Lulabee,

Thanks for saying it so well!!!!

Naniam,

As Lulabee nicely put it, we don't want to say things. I'm sure you figured it out as can windless.

Doctors even have a hard time telling us things. You could not pay me enough to be an onc and tell people the things they have had to tell me. I usually figure it out and then ask and they confirm, that seems easier on them.

alesta29

Just wanted to say thanks to Lulubee for putting it so well. 

Windlass, wish I had answers for you. Grab each and every moment you can. As I type this I'm thinking I should be taking my own advice as I sit here feeling sorry for myself. BC sucks.

Very best wishes to you and I hope the damn thing stays gone for a long, long time.

Laurie x 

Anonymous

Thanks for all the insight and kindness, ladies. Lulubee: from your post I see that there are several roads before me. One is marked Hope, one is marked Stage IV, and the third is marked Excessive Hand-Wringing Worry. I am going to try to take your cue and pack my picnic basket to whistle my way down Road 1 unless and until something changes.

Thanks Lulubee and everyone else. I wish we could all have a group hug. (And maybe a group cry.) This can feel so isolating.

Adey

Lulubee- Beautifully put.  Lesson learned.  Thank you.

pejkug3

I've been reading along with you ladies and I want to thank everyone who responded.

I'm getting ready to finish up my Herceptin and I've been worrying about what comes after that. 

I'm not going to do that anymore.

mom2twins34

As a 3C with chest wall invasion and lots of nodal involvement who hasn't been able to finish my full complement of Herceptin, I have STRUGGLED with that fine line between living in fear of what will come next and living for the moment--and I find that the "living for the moment" hardly ever wins.

I vacillate between feeling like it's not that bad *and* feeling like it was serious enough that I should push to have my symptoms checked out when something concerning is going on.  I wage a constant battle with myself--I think primarily because I didn't trust my instincts and I let the doctors dismiss me for so long before I was actually diagnosed, but sometimes I wonder if I would feel this way regardless. 

Your posts are a poignant reminder that there is no rhyme or reason to this terrible disease.  You helped to reassure me that I should be proactive about getting things checked out, but also reminded me that there is no time like the present and that I should do a better job of taking time to have picnics, relax on the sand (and find ways to get to that sand!), hold babies and hug my own (who aren't quite babies any more!)... 

Thank you so much for your heartfelt responses... 

misswim

Lulubee, your words are more appreciated then you could know. Thank you for you wisdom.

Iamstronger

Lulubee-this what exactly what I needed to read.  Thank You.