What is our prognosis, anyway?

Holeinone

Wintersocks, hoping that your feeling better, so many reasons for all of us to be scared. My path report said my cancerous lymph nodes had focal extradonal extension. Neither surgeon or oncologist mention this to me,( of course I had to google it ) maybe it's common, & no big deal to them. I saw it on the report as I was getting my last chemo infusion, 10 days ago. I told the onc that I was freaking out over this, she say that is the chemo job to take care of it...

Thx to all for all this info

Anonymous

This picture below describes what' always been a question in my mind. I had IDC with Lobular Features and positive nodes but nothing was mentioned about whether blood vessels could have transported some cells to destant parts that could still be hiding somewhere. Is this common?

Metastasis. Cancer cells invade lymph nodes and blood vessels near a tumor and spread to other parts of the body.

Oceana

Tomboy

you are exactly right oceana. but that is why we do chemo. it is the mopper upper of any stray cells. it goes through your blood stream, and also the lymphatics, which are actually working veeery close to one another, and in tandem, you might say. the good thing is is that if we went to stage four, it is actually a gentler treatment, more about quality of life, than the big guns they throw at gals like us, when they are still trying to "cure" us. its how it was put to me.

Momine

Winter, ask the nurse why it is there and what exactly it means. If it is not as bad as you imagine, you will save yourself a lot of worry.

Momine

Oceana, I had both lymph and vascular "involvement" - i.e. high chance that cells had already circulated to the rest of my body. As already said, that is what chemo is supposed to mop up, and AI/tamox plays a big role too, in starving any stray cells and keeping them from growing.

wintersocks

Momine,

Too scared to.....

ziggypop

Hi wintersocks - I have a diagnosis much like yours, and also had presurgery chemo. My surgeon told me that the chemo was primarily to shrink the tumor but that it also gave them some advantages - one of them being able to see the tumor 'bed' - which gives them the ability to better guide treatment. I am guessing (and this is a guess) that the bed of your tumor was close to your chest wall. The reason that they would note the 'risk' - not expectation but 'risk' - is that it would then influence how the rads are targeted. When they do surgery, they want to get clear margins - I think it's at least 3mm of tissue around the tumor itself that has no cancer cells in it. If they don't get this, then they redo the surgery - so you had clear margins. Still if the bed is close to the chest wall then there's some possibility that some cells made it into the chest wall. They don't want to target rads where they don't need to - In your case, I think the surgeon indicated this as a means of telling the radiation onc - you need to go ahead and target the rads here 'just in case'.

Momine

Winter, I know the feeling. But every time I have had something like that, I have always felt better after getting a straight answer and a chance to ask questions.

Ziggy, what you say sounds very logical. I remember my onc said he wanted my supraclavicular nodes to get a good zapping. We hadn't detected any nasties there, but he was obviously concerned.

wintersocks

Ziggypop,

Wow that's a good explanation. Thank you. In my report she had written that 'X knows she is at future risk of chest wall recurrence'. I would have to get the report out to kn0w exactly. It's just too scary. I don't even know what counts as my chest wall!

I note we have a very similar dx and dx'd around the same time. I hope you are mainly doing ok?

Momine, I have recently had gynae surgery and just feel to exhausted to ask any more questions at present - my brain feels full up! - but I know eventually I will have to. I hope you are doing ok too in Greece? Our weather here is cool, but not too bad I hope yours is ok too.

Momine

Winter, I hear you! I have to go get my spine checked again for bone density, and I keep putting it off because I am just sick of doctor stuff. The weather is COLD here. I realize it doesn't rate by NY, Chicago or northern Europe standards, but when you figure in that we do not have central heating (old house/mild climate) a high of 7 C is preety rough.

ziggypop

http://www.cancer.gov/cancertopics/pdq/treatment/breast/Patient/page2#Keypoint9

wintersocks - if you go to the above link & scroll down to the illustrations for stage III b, you can see what the chest wall is. Note that you are NOT III b - it's probably that your tumor was close to the chest wall so there is some 'risk' that some cells could have traveled through the tissue & lodged in that muscle area (I assume). One thing that I would as about, if I were you, is whether you can have breast MRIs done yearly - given that you have this risk, it would seem to me that they would want to. The other thing to note is that IF the 'risk' actually becomes a reality - it would put you at stage3c - which is still treatable. You also want to keep in mind that the chemo, Femera, and rads ALL work to target any cells that might have escaped into that chest wall. So you're hitting them with 3 things designed to kill them.

Momine - They hit my supraclavical nodes hard too. I'm guessing with tumors of a large size with a number of nodes involved, that would be warranted. Like you, I had the chemo neoadjuvantly and had an ALND - I don't know exactly how many nodes were positive (two still tested positive after the chemo). They needle aspirated a few of them that looked bad during an ultrasound & they all came back positive. So at least I know that the chemo did its job on one of them. : ) Hoping that with that and the rads, any that might have made it into other nodes got good and zapped.

kt1966

Hi girls.

This is such an interesting discussion. I was given the doom & gloom 'you have around 20% chance of 10 yr survival without treatment or with treatment 40-60%'.

I always thought I was stage IIb, but looking at Ziggypops link & then checking BCorgs section on stages it looks like I'm IIIa. (I had a 4+cm tumour, and 2 nodes extensively replaced by metastatic ca, one being 3cm) Have the criteria changed recently or have I always had it wrong?

I just had a pmx (had mx 10 years ago, but tumour wasn't seen on mammo, so had other removed finally for peace of mind) and am currently on zoladex and letrozole after 7 yrs of tamoxifen. I've had 2 one yearly doses of zometa, but not this year.

Oh well, regardless of stage I figure I'll just do the treatment recommended by my onc and hope for the best. There's too much living to do to spend too much time worrying about the worst case scenario

kt

ziggypop

kt199 - From what I can tell on these boards, and from my own state of mind, I think that when we get done with the treatment - there's a time period when we're dealing with learning how not to worry. During treatment we feel like we're doing something to fight this crap. Right afterward there's just relief to have the chemo & rads done, and then after that, it seems like most people (not everybody) go through what I'm now calling the 'fear period' which seems to ease up for most people after a while. Worrying about something that you can't do anything about seems to me to be a waste of time - but I still have to figure out how to make my mind quit doing it. Keeping busy and focused on living seems to be the answer.

jab

Question - In any reading I have done, it suggests that lymph node involvement is the largest factor in reoccurrance. Is that what you folks are hearing/reading? Also the size of the lymph nodes seem to play a role - Macro vs micro metastasis.

ziggypop

Jab - I think it is a number of factors as well as how those different factors respond to treatment. Recurrence can be local or distal, I'd guess that local recurrence is more dependent on the grade of the cancer and possibly on the 'shape' of the tumor (lots of little ones or one very solid mass) as well as its location. If there is a large amount of node involvement then it would suggest a greater possibility that some cells made it past the nodes and were already in distal sites at the time of diagnosis. (although the cancer cells can travel via the blood as well). And then there's the treatments - chemo works great on some cancers and not so well on others & nobody really knows why. Then there's the receptor status - AIs and SERMS can have great benefits. And before herceptin, HER2 status was more important than it now is.

kt1966

Another point- I have almost made it to 10 years now!

So glad I'm in the 40-60% that was quoted to me

(I 'fixed' my stage)

And Ziggypop, I hear you on the fear when you're no longer in active treatment- hence my 7 years on tamox rather than 5, & now the zoladex & letrozole! (I had rising tumour markers 2 years ago-Ca15-3 went up to 387, so the new regimen of z & l was started)

jab

Thanks Ziggypop - I'm trying to get a better 'sense' for what my pathology is telling me. For some unknown reason the pathologist stopped testing lympnodes at 5. (I'm 5/5). I also know one was > 2 cm and there was macrometastasis in all. My BS and Onc say the same thing when I asked - there would be no difference in treatment if he had looked at more. Ti me it might be the difference in IIIa vs IIIc - I wont know if I am a c or not.

Perhaps just splitting hairs but it feels important to me

aaoaao

I don't know if this is going to be helpful I hope it will be. I'm Stage IV...I was Stage IIb 3 years ago. I can't give you the survival rates because I don't believe in statistics for the most part. I will say that if the cancer does come back it isn't the death sentence that it use to be. Yes, it isn't incurable at that point but it is treatable. People with mets can live for many many years. Some have even lived for close to 20 years..of course not all do. However, there are many that have lived for over 10 years. There are many treatments available with more coming down the pipeline. I hope I haven't overstepped my boundaries since I was never Stage III and because I have no real survival numbers to give, I just wanted to try to reassure you that long term survival even at Stage IV is possible. Hopefully, all of your cancer will be gone forever.

jab

Thanks aaoaao, but I was looking for specifics relative to stage III. The devil is often in the details.

Holeinone

jab, is it lllb that is inoperable ? I am going to look that up, I will get back to ya...

ziggypop

aaoaao - Thank you. I wish that there were a way for those of us who are not stage IV to be as supportive of you all as you are of us. I often read the stage IV threads because the kindness with which you treat each other, the willingness to discuss any topic and address your own fears & anger and celebrate each other's joy gives me hope somehow - not simply that if I become stage IV, I will have some time, but that I will be able to cope with the diagnosis. If there is something that I hope to learn from the 'fear' and the wisdom that I hear from you all, it's that so much of what we think about and spend our time worrying over is just not all that important. I hope that I learn to enjoy each moment - the pleasure that seeing your little head popping up on my computer screen, the prettiness of the snow outside. I saw that ability in my dad after his diagnosis of terminal cancer - and I saw him able to accept the fact that he was not long for this world and be able to be at peace with it. I don't know how we get to that point, but I know that it is possible. I don't want any of you who are dealing with the reality of stage IV to be there, but I am so grateful that you allow us to see that reality. I don't know how to say it well.. wish I did.

ziggypop

Holeinone - stage 3 c is divided into inoperable and operable, and the general course of treatment for inoperable is to use chemo or AIs/SERMS to shrink the tumor to the point of being operable.

ziggypop

Jab - I understand what you're saying, but their job is to get you to the best 'odds' that they can - and not only that, but their job is to get the most people to the best odds that they can get them to. Staging is really about determining treatment plan. That said, since you want to think about this (and I fully understand that) were the 5/5 nodes that tested positive the result of a SNB or of an ALND?

jab

Ziggypop it was an ALND. My BS thought the pathologist might of been a bit lazy. I did ask for a review but nothing so far... I understand that treatment would not be any different, but the longer term prognosis might be, statistically speaking, that is. We all know that if it is in your nodes, it is a worse longer term prognosis. More recent studies suggest that lymph node ratio is a better prognotic tool (total positive/total tested), hence the more nodes tested the better.

My concern is that my tumor pathology was also dogs breakfast. That, and only having 5 nodes tested makes me wonder....

Anyway, ultimately I am not going to dwell on this too much more. I just thought you folks might have some thoughts

Holeinone

jab, my surgeon took 7 nodes, 6 positive & 1 neg....had a Pet scan several days later & it appeared that I might have one more, hot spot, or just blood from the incision. They all seemed like no biggie, that is the job for the chemo & rads...my bs does not like to take a lot of nodes, worries about LE..

Did you have a Pet Scan after surgery?

jab

Hi holeinone

No Pet scan. Because I had a lump node dissection the pathologist should have tested more as he had lots to choose from.

The more I think about this, the more I think I'll push it with my BS and Onc. I'm not sure the ststistical prognosis will change but at least ill have a bit more real info.

Thanks for your help!

Mardibra

Zometa and metformin. I'm going to ask my onc about those at my next visit in January.

Do they only allow Zometa when your on an AI? Ive been on Tamoxifen for about 1.5 years. Based on the stats they gave me, I will stay on it for the rest of my life if they let me!

Mardibra

Someone mentioned earlier that NCI's don't prescribe Zometa. I'm treated at an NCI...anxious to see what they say.

oaktownmom

Mardibra - I'm at an NCI (UCSF), and I had no trouble getting onto Zometa for preventive reasons (not bone loss reasons). I started when I was on Tamoxifen (have since switched to an AI). My onc wouldn't prescribe metformin though, so I enrolled in the trial, which she was fine with.

Momine

Jab, yes, I would push for a full pathology. They stopped at 5, WTF? Pardon the French. I had 22 nodes removed and they checked all of them. How else would they get an accurate staging? I get that it won't change the treatment plan, but information is power IMHO, even if it is unpleasant info.

Mardibra, I have had several zometa discussions with my docs. The most recent research indicates that zometa gives no benefit in terms of preventing bone mets unless you are already in established menopause at DX. Since I was not, we have decided to skip it for now. http://cancerres.aacrjournals.org/cgi/content/meeting_abstract/72/24_MeetingAbstracts/PD07-08