Am I Stage II or III

mammalou · February 2012

I was originally diagnosed as stage IIb... 3.6 IDC 1/9 lymphnodes. I sought care because of a red breast. The first skin biopsy came in negative but a second skin biopsy done with second lumpectomy turned up 1 mm dermal lymphatic involvement in my skin. The docs did not feel I had enough of the clinical symptoms to be classified as IBC, but I was pretty much treated as such. Had a subsequent MX, chemo, and rads. The ask the expert says that the dermal lymphatic involvement trumps clinical symtoms and that I should be classified as IIIB, but my docs at a very esteemed institiution say that since I do not have IBC I am Stage IIB. I can't seem to quit worrying about this, but wonder if putting a stage number matters anyway. I guess when I look at stats, I just don't know where I fit. Anyone else have this small amount of skin involvement and get some good information on it?

momof3boys · February 2012

I would put more stock into what the doctors that are actually treating you are staging at.

YATCOMW · February 2012

I had skin involvement so I have been watching the research......

I know awhile back they put skin involvement in the stage IIIB category as they thought skin involvement (not IBC) was not good......but there have been more research and it now appears that the cancer in the skin is not worse than what you would normally have been staged without the skin involvement.

So you current doctor is probably right on.......I say go with it.....:)))

Jacqueline

mammalou · February 2012

Thank you. That makes me feel a lot better. This skin involvement has been haunting me. I haven't been able to find any research on that where it doesn't say you have IBC.

mamabee · February 2012

I also have skin involvement, but not IBC. Because of my skin involvement, I'm being treated as stage 3b, locally advanced, but I've found several studies that show that non-inflammatory skin involvement doesn't affect your prognosis. Google "non-inflammatory skin involvement" - stage 2b sounds good to me!

mammalou · February 2012

Thanks so much mamabee. I feel so much better after reading some articles on this.

bak94 · February 2012

My situation is a bit different, but I too was not certain of my stage. My docs said stage 3 but a ct report came back and it said stage 4 because one of my positive nodes was possibly a mediastinal node instead of an im node, it was in a grey area and docs said stage 3, doctor who read the ct said stage 4, but my mo and bs said I fit more into the stage 3 category and stage 3 prognosis and treatment. Since your involvement was so small I would think lower stage, but really, it is just a number. Someone with a lot of skin involvement could still be a stage 3 compared to you with little involvement, but still considered the same stage, there are just so many different situations. I choose to believe the lower stage just because it makes me feel better and it is what my mo says, even though there is disagreement! Whatever it is we can't change it, and the stage is just a number. In my situation, the stats between stage 4 and stage 3 are significant, I try to focus on the stage 3 and the fact that I had complete response to chemo, but I still freak out:)

Leah_S · February 2012

Mammalou, please remember that the main purpose of staging is to set up a treatment plan. In your case, the treatment you got is appropriate for both Stage II and Stage III. The stats at this point aren't relevant - you've had treatment and will continue to have appropriate treatment.

Stats for mets are really just an educated guess. If (G-d forbid) you end up with mets then you risk was 100% and if you don't it's 0%. So you could say that staging is a tool your docs use, and for us it's more an emotional thing than anything else. For me, I feel like I've been all stages. When I was first diagnosed, imaging showed no nodal involvement so I thought I was Stage I. Then I found out that, even though the tumor was only 1.6cm, I had 6 nodes involved. I didn't ask the onc what my stage was because I didn't want to know. A few sites I saw said that was Stage II so that's what I called myself because I felt safer. After treatment I asked my onc and he said Stage III (which I really knew but tried to ignore). Then bone mets were found so it's Stage IV. All that changed in reality was the treatment plan. What changed in my mind and my heart - that's the part that's big.

Leah

jennyboog · February 2012

I had skin involvement and my dr was comfortable dx me with IBC. I had a lump first and actually developed the IBC before chemo started. I didn't have all the symptoms, I had a red area and heat but no orange-skin or inverted nipple, etc. I laid a skin thermometer on the area and it read 103 degrees. As others have said, it's only used to determine tx and as long as you got the big guns then it should have taken care of it all....skin involvement or not. This being said, if you are trying to get SSDI it could make a difference. I think it does help your case if you have IBC...I was told it was an automatic approval ususally (I have not applied so this is here-say). Reading about IBC can be very scary, I saw mine disappear when I started chemo so, I saw it my chemo working, that gave me reassurance. I hope you feel the same soon.

mary625 · February 2012

bak94--could you explain "complete response to chemo?" Does that mean that your tumor went away altogether? I want to know what I should expect to hear from my MO when I meet with him next week.

mammalou · February 2012

Thanks for the information. I did the web search suggested and read the studies. It made me feel much better. I just got my medical records and the surgeon said I had possible "equivocal imflammatoid bc that was acting like Stage I". In other words, I guess this means they really can't decide what I have going on. They also said I have grade 1 that was not acting like grade 1, but more aggressive. None of this is reassuring, but I guess I just have to live with the uncertainty.

bak94 · February 2012

Hi Mary,

I had chemo first nd then had surgery. They could find no cancer when they did the pathology on all the tissue and 2 nodes. Of course, my im nodes were not operable, so we could not get a tissue path report on that but the nodes did not show up on andy pet, ct or mri. So they say I had a complete response to chemo.

bak94 · February 2012

Mary, I hope you have had a complete response! Have you had scans since you finished chemo that give you any kind of idea? Please keep us posted! I will be thinking of you.

Karina121293 · February 2012

Dear ladies,

This is an interesting subject, over which I puzzled a lot. I was dx III B, not IBC. But never really understood too clearly why. I know III B is when the tumour is attached to the chest wall or the skin. Well, mine was more than 1.5 cm away from chest wall, and I did not have symptoms of skin involvement, apart from itchy nipple and a little inversion. Also, as I am a small size and the tumour was initially more than 3 cm, I could feel it right under my skin at 2 o'clock. But I did not have any change of colour, rash, heat or wound.

So, my question is: what I described above, is it a symptom of skin involvement and what other ways skin involvement can be presented? What were your symptoms? I have been wondering over this, since cancermath stages me as IIB.

Mammalou, I hope you don't mind me asking my own questions in your thread. Somehow, didn't cross my mind to ask on BCO, so thanks for bringing up the subject.

mary625 · February 2012

I have not had any scans since chemo, only a follow-up breast MRI. That showed significant decrease in the tumor size, but nothing like a complete response. My surgery path report showed a 1.8 cm tumor (reduced from original estimate of 6 cm +) and 10 out of 16 nodes involved. The latter was the bad part. I knew I had one palpable node that had been biopsied and was cancerous. I was not expecting that many nodes. That has now moved me from Stage 2 to Stage 3, and I think it's Stage 3c. My doctors prefer to use the T1N3 terminology. I have only known about my new stage for a few days now, so I'm trying to educate myself. The reason I think I'm Stage 3c is because of the number of nodes. However, I also noticed something about nodes clumped together. Is that the same thing as extra capsular extension? I was told I have that and that it was when the lymph nodes show signs of the cancer having broken through.

As I said, it's not even been a week since I got my surgical path report from the BS. I will be seeing my RO today and MO on Monday. Hopefully, things will become clearer.

mammalou · February 2012

Hi Kira, I believe that skin involvement is when they actually find cancer cells in or on the skin. This is usually done through a punch biopsy or while having a lumpectomy they take a skin sampling. The pathologist would find it. You can have IBC symptoms and be considered IBC even if they can't find it on biopsy, but I think the symptoms would have to be very conspicuous for this. I don't think these would include an itchy nipple, but an inverted nipple is a symptom. I presented with a red breast and skin thickening. I also had cancer cells show up in the dermal lymphatics on skin biopsy. They still did not want to diagnose me as IBC because the redness didn't cover enough of my breast. I think that some doctors would probably have diagnosed it as such. I know that you can be Stage IIIB if you have lymph nodes near the breast bone, but I don't think tumor near makes it a Stage IIIB. I have a feeling that there is a wide variety of Staging opinions out there and that is why I can never quite get rid of the fear that I actually had IBC.

jennifer1 · February 2012

My daughter was with me when I had my first appt with breast surgeon after cancer was removed so I know what I heard was correct. Left was called at stage 2b with 4 nodes and right was stage 1. Then I got a very aggressive onco and she called it stage 3a on left. never mentioned right. She wanted to remove breasts and all female parts and would not let it go when I had already had the lump removed. I had to change drs she made me so crazy. While I did have a large tumor on the left it was encased and went to nodes under arm. The right was just a spot. My personal dr calls it stage 2b. Why does it matter? Well bc on its good day is a horrible thing and stage 2b just sounded nicer at the time. Almost 2 years out and it dont matter as much now. Different drs seem to have different ideas.

slousha · February 2012

Hi Jenifer1,

I was told that 1-3 nodes are stage II, 4 and more stage III !

Best

mammalou · February 2012

At this point, after treatment, it only matters because of recurrence stats and the fear you feel about recurrence. I was trying to get some reasonable recurrence stats so that I can have have a realistic picture in my mind, and then move forward with that. Unfortunately, I really have no idea where I stand in regards to that and my oncologist never seems to come out with any numbers for me. I ask, and then I walk out and I still don't know. I guess it is my fault for not being more persistent.

jennifer1 · February 2012

Slousha, I do have 4 nodes so I guess crazy dr was right. Again perhaps I needed to have the full treatment in order to make sure it wasnt anywhere else. Things happen as they are suppose to. I see so many stage 3 women doing great years later, I have let it go. It just doesnt seem important like it was at the begining.

Mamma, my dr doesnt do numbers either. He doesnt do scans anymore and mammo's just once a year. He is a good doctor and head of the dept so I believe what he says.

Peacock · February 2012

I am on the II/III cusp, though my doctors prefer the other way of measuring (T/N). I think you should let it go if you can. Recurrence stats get stale like bread left on the counter. Improvements in treatment mean that even a decade-old info is just that, old.

Cancer math is somewhat helpful, tho, in my case, doesn't give all the info I need.

financegirl · February 2012

Let me tell you what my fantastic oncologist told me the first time I ever saw him. I asked about my stage and he says he doesn't express that anymore. He said that people put too much stock into a "number". He said he has folks with stage IV (not just breast cancer) and they have survived many years and still around. Look at Elizabeth Edwards - she survived 7 years. Also, each year you are alive, more strides are being made in treatment.

He said he truly believes that cancer has been around for so long and probably won't be cured anytime real soon but it is fastly becoming more like a chronic disease like AIDS/HIV. Not that many years ago that was a death sentence but today a drug cocktail keeps them alive and with a good quality of life for a very long time.

mammalou · February 2012

Thanks peacock and financegirl for putting this in perspective. I think that sometimes I just want feel like I have some grasp on the future, even though I know I don't!

Am I Stage II or III

Comments

Categories