Recurrence???

anniescott

I'm writing in the hope that I will hear back from some other breast cancer survivors who have had similar experiences. I was diagnosed with stage 2, hormone negative, her2 positive breast cancer in January 2005. I had a unilateral mastectomy with lymph note disection. I had one positive lymph node (the sentinel node). I had 4 doses of A/C and 4 doses of Taxol followed by a year of Herceptin. Radiation was not required because I had a mastectomy rather than a lumpectomy and only had one positive lymph node. Everything was fine until November 2007 when I began to notice this discomfort in my back, lower right ribcage area. When I told my Oncologist about it he ordered a CT scan of my whole body which did not show anything. My Oncologist and Internist were both telling me I must just be paranoid. I went to my surgeon who ordered a PET Scan which also did not show anything. When the discomfort still didn't go away I decided to find a new Oncologist. My new Oncologist said there are certain breast cancers that can recur in the bones that can not be seen on a PET Scan. She ordered a bone scan on 7/8/08 and that scan showed a small(6 Millimeters) lesion on my 12th rib at the exact spot where I have the soreness/tenderness. I was told the Radiologist thought this was inconclusive and too small to biopsy at this point. One 8/6/08, I had a dedicated CT scan of my 12th rib and the lesion had not changed. My Oncologist said I could have the entire rib removed to do the biopsy or I could wait and have another dedicated CT scan of that spot in three months. I consulted a Breast Cancer specialist at UCSF who was against removing the entire rib just to get a diagnosis. He felt re-scanning again in 3 months was best. On November 25, 2008 I had it scanned again and still there was no change and thus far the lesion is still too small for a needle biopsy. This limbo is very difficult. Has anyone had a similar experience? I feel like I should be doing something pro-active to help myself, whatever that may be but I haven't a clue what to do. All the doctors want to do is wait and see. They are unwilling to make a diagnosis without a tissue sample . I understand that but I am not sure if I want to have the additional surgery to remove my rib if that isn't going to help with my long-term survivorship. Even with all my reading about breast cancer I still feel so uncertain of what the best course of action would be. Any input would be welcome.

Margerie

Annie,

I have no experience with this, but was wondering if you are taking any bisphosphonates like Fosomax, Boniva, Zometa?   They are bone building drugs, and I am taking Fosomax prophylactically since I am on Arimidex.  Maybe can help your situation?  I can completely understand your unease, wish they could definitively determine what it is for you!  Probably a very good sign that it has not grown in 6 months or more.  It is a crying shame that some little 6mm speck in your rib can keep you up at night.......

Best wishes for you in this new year

07rescue

I have no experience with this situation, either, but would also be concerned if I were in your position. If the doctors don't see anything conclusive about the lesion being malignant, what other explanation do they have for it? If you are in discomfort then I would think they should be doing something to treat it. Please keep us posted on what you are going through.

kalyla

I have no answers for you but hope that 2009 brings you answers and peace.

dlb823

Annie ~  You must be so frustrated to be told to wait & see!  I hope others with a similar firsthand experience will be able to give you some concrete suggestions.  But, I think if I were in your situation, I would go for a third opinion, or however many it takes for someone to give you something positive to do, rather than just wait around.  Removing the rib sounds too extreme, but surely there's something else that could be done at this point.  You may not even have to physically travel for another opinion.  I'm wondering if you could send your records to Stanford or UCLA, for example, and see what they might recommend?  

I'm so sorry this has happened, and I hope you will get some more help with the situation very soon.  Take care ~ Deanna  

Liz08

Annie-

if you don't get any answers on this forum, visit the www.her2support.org forum and go to messages and post your question (start a new thread in the her2 group section). Here's the link

http://her2support.org/vbulletin/  just copy and paste it into your address bar.

The her2 support site is for those who are her2+++ and most of the members there have gone through alot ( including various scans) and therefore have answers to complicated questions.They are a very knowledgeable group in regards to Her2+++ diagnostic testing for recurrence.

It is definitely good news if nothing progressed on the scans since progression can be a strong indicator of mets.  I know bone scans give many false positives and can pick up any type of inflamation including both cancercous and non-cancerous inflamation. Have you been rubbing the area or applying pressure to the area prior to the bone scan?  A cough of or hitting the area and not even knowing it can cause the area to light up too.  Bone scans are extremely sensistive, atleast that what my rad oncologist told me. 

You had mentioned that a lesion showed up. Is it an actual lesion of just a spot?  I have read and heard that breast cancer mets usually show up as blastic or lytic lesions and usually more than one spot shows up. The main difference in the lesions is one type of lesion breaks down bone and the other type actually makes almost a bone spur on the bone. You can google bone mets and get a better explanation.  Do your reports (from ct-scan) state no lytic or blastic lesions?  If they do, this a good sign too.  From reading and my personal experience the wait and lets see is the common practice and can be very scary and frustrating. The wait and see approach can make you feel like a time bomb but don't let one spot consume all your energy,  focus on the present and if it makes you feel better seek out yet another opinion.  You have to remember her2+++ bc is agressive and fast growing, so if according to the scans no additional spots appeared than as I mentioned b/4 that's a good sign.

Hope someone else comes along to answer your question soon.

Wishing you a cancer free and healthy new year.

Anonymous

I can't imagine a Her2/Neu met to the bone being unresolved after a year of scanning.

If it were me, I would follow the docs recommendations.

TammyLou

The craps is that treatment for Stage IV cancer is usually concentrated on symptom management.

IF (and I don't think it is) this is cancer, the rib is not weight bearing.

IF (and I don't think it is) this is cancer, then I would not necessarily be in a hurry to treat it (with chemotherapy).

The "typical" treatment for bone mets is hormonal manipulation (if the cancer is ER+), zometa (bionophosphates = bone strengtheners) and possibly, spot radiation (if it is painful)...and perhaps, a little Herceptin (or Tykerb).

My chest wall looks like 12 miles of bad road...like somebody beat me with a sledge hammer.  I have uptake in my sternum and my clavicle.  (Thank you, breast cancer treatment.)  We're not  treating me for cancer at this time.  Reading my scan reports would scare the "Hasta La Vista" out of Arnold Schwartzenegger.

I know it's tough...KNOWING that something is there.  However, it's very, very possible that the "something" is not breast cancer.

I take 15mg MOBIC every day to keep the pain down to a low roar.

IF the "something" is stable, then it is very likely something else...especially if it hasn't changed in over a year.

I know it's anxiety provoking...trust me on this one.  (Looking into my surgeon's eyes, saying, "Did you chop my 3rd rib up?"  "Can you explain these hot spots?"...I get it.)

 My sympathies.

Please keep us posted.

Tammy Lou