If you are not Stage IV but have questions, you may post here

Hello all,

I am back now from the docs who basically said we are talking about you with all the docs on Monday so stay tuned.  Several medical tests today though including a biopsy of supraclavicular nodes.  Thanks for all you support.  

I am told that I have a regional spread not a local recurrence.  It is the same type as last time as it is er/pr + and her2-.  It is different in that the grade is still 3 but now 50% rather than 15% which I'm told is good in terms of response of the cancer to chemo.  I have supraclavicular nodes which though the surgeon seems like he is trying to hide it seems to make him very upset.  He asked if I had any symptoms / feeling poorly.... no in fact I am finally feeling better after surgery, chemo, and rads last year.  I am not sure but I beleive that there may be 5 areas with the largest being 2.5 x 2.3 cm.  There is also skin thickening near the old surgical sight which with the clear mri the doctors think is a post-surgical reaction.  An ocotype and other dna tests are being done and will bring more info.  Doc said in the past any supraclavicular was stage 4 but that is no longer the case.

So, as I understand it, not good but the prognosis is not clear.  Treatment of AC then T and continuous checking to make sure that the cancer is responding to the chemo.  Scared Sh#tless of course especially because it seems that the chemo not resection of lymphnodes and a bmx are the preferred treatment.  Also, because doc doesn't recommend removing nodes above the clavicle as the "morbidity" isn't great.  This probably requires a thoracic surgeon.   

Thank you for everything.

V

Hello, I have terrible pain in my neck I had an ex-ray and my GP said it was arthritis.

Would an ex-ray show cancer? Waiting for foot and knee scan as well.



Thanks xx

I have a question ? I read the stories of all you super brave women and its amazing but how is it some of you had stage 0 or 1 and end up with 4 ? Nothing is working ? So Discouraging

CT scan as a follow-up to a CT/PET in January.  In January had 2 retrocaval nodes that were enlarged.  This time they were unchanged.  In January, only a mild degree of dependent atelectasis in lower lobes.  This time "8mm left upper lobe pulmonary nodule is present." No additional nodules and no pleural effusion.

What do you guys think?  Should I push to have this re-done beofre 4-6 months which is what the doctor is advising?  

Retrocaval nodes: a group of lymph nodes of the right lumbar group situated behind the inferior vena cava.  I had two that were 1cm each but remain unchanged in the 6 months since last scan.  The nodule is new.  

Thanks for the advice.

I'm not sure if this has been asked before and apologies if it has - my mother was recently diagnosed with breast cancer, and when doing her staging tests her abdominal CT scans showed activity that was 'compatible with metastasis' (as quoted on the report) on her hips



The doctors recommended doing chemo and radiotherapy right after her breast mastectomy on her hip, without doing any further biopsies beforehand.



They are saying that surgery will be needed to do further testing because the location is too deep for a needle. Has anyone had a similar situation like this - going straight into treatment without confirming that it is indeed bone mets ? I know the doctors have a lot of experience and can probably tell what is what by looking at the scans, but there's just a small part of me hoping 'what if that part is actually benign?', and wondering exactly why they mean when they say 'compatible' - does that mean maybe or definite?



Sorry for all the questions, still taking baby steps in learning everything



Thanks & many hugs

netty46, I cannot remember the last time I had a cold.  It's been at least two-three years and bronchitis....probably two years before that.  No pnuemonia is more than 10 years.  Actually other than cancer I'm a pretty healthy gal.  

No idea about the nodule.  Wait and see.  Yah!  What fun!

Hi ladies...... Need some advice. I have been out of treatment for about 2.5 years, still on tamoxifen. In the middle of a big move to a different climate. I have had some recent shortness of breath- in early June, very severe, chest x-ray was clear, now, just what feels like a scratchy throat and a little chest tightness here and there, only after the first few days. About to start Arimidex next week, have an appt with the new oncologist in two weeks. I tend to follow the two week rule- and I exercise a lot and have not struggled during that- seems to open my lungs up. But I am not sure what to do..... In between docs and thinking I should just wait the two weeks and see if it clears. Any idea what lung mets symptoms are like?

Thanks Chrissy! Its hard being between docs. I did call the onc I am transferring from, she told me the same thing.She did recommend that if my SOB gets worse or it is impeding my exercise (which it is not, yet), then to call her and she'll arrange an x-ray. I think my anxiety makes it that much worse.

Do you think it would be out of line to ask for a little ativan to get me through this transition? I think some of the SOB is my head from all the stress!

Hello Chrissy, Barsco and ladies

Here's an interesting interim result that I had never considered about the lump in my left eye socket: in brief, the ophthalmic surgeon says it could be a prolapse of the lacrimal gland.www.ncbi.nlm.nih.gov/pubmed/23...

In brief, that's a piece of the lacrimal gland is hanging down in a place where it shouldn't be.

Surgeon can't be sure. Took biopsy last week and says only results in two weeks will tell but he is not overly concerned. Fingers crossed!

Best wishes

Alice

Alice - good news that the surgeon is not overly concerned. Hoping for nothing but a lacrimal gland taking a wander. Our bodies do some funny stuff huh? Keep us posted.

Hello Chrissy and Barsco

Thank you for your replies.

As Barsco says, aren't bodies funny things!

Never heard of a lacrimal gland that goes wandering before. How strange.

Just goes to show though, to paraphrase Chrissy, that just because we have these odd lumps and bumps it doesn't always mean it's cancer.

I'm keeping my fingers crossed and hope for good results for our worried sisters.

Love

Alice

Soteria - I too am very thankful that Chrissy started this thread. It is not only helpful to earlier stages, but also to me as a stage iv gal. I have learned a great deal from all of the questions asked and answered.

I really think that Chrissy has done an AWESOME job replying to all of the questions with her vast knowledge. My knowledge is limited at this point, but I can give encouragement, support and hugs galore to those in need.

After all - we are all here for one another through the good, the bad, and the ugly.