mets to spine

jpmom3 · November 2008

My 26 year old sister was diagnosed with Stage IV breast cancer last December. The doctors told her that it was very aggressive, but they were willing to try chemo. Her cancer was Triple negative, so they didn't hold out much hope that it would work. She has been through two very harrowing rounds of chemo, radiation, and a double mastectomy and lumpectomy under both arms. She has been through multiple bouts of pneumonia, sickness, and severe burns from the radiation, then lymphedema for which she has to wear special sleeves on her arms. Through it all she has been very positive, and has hidden much of her troubles from all of us. She has a 12 year old son, she is a single parent, and she was very much determined to watch him graduate. She finished her chemo about 2 months ago, her PET scan showed that she has a spot on her spine; within two weeks the tumor has grown and now mets to her rib also. She is having a lot of pain and difficulty walking. The oncologist has told her that they cannot help her anymore, they can only try to make her remaining time comfortable! I don't understand and I am very frightened for her and for her son. Aren't there any other treatments? How can this be?! To make matters even more stressful, her son; who is very athletic, went to Urgent Care last night because his knee was swollen. He is now being sent to oncologist because they believe he has Hodgkin's Disease! I'm sorry, I just wanted to vent and see if anyone else could think of anything else that her doctors haven't! I just refuse to believe that a 27 year old woman has to "get her affairs in order, because there just isn't anything else doctors can do"! Thank you!

Analemma · November 2008

You need to jump over to the metastatic/recurrence board. Something's not right here. She only has mets to her bones and they are giving up on treatment? There are lots of treatments, and cancer patients don't die from bone mets. What causes cancer death is organ failure or brain problems, in most cases. There's part of this puzzle missing.

jpmom3 · November 2008

Thank you! I will check it out. I thought something was wrong with that picture myself, but admittedly she hasn't exactly been one hundred percent forthcoming with us about everything. We've gone with her to chemo, surgery, doctor's visits, etc. but she pretty much has the doctor filter out the info we receive I think! Thanks again!

slonedeb · November 2008

i am like analemma something isnt right and isnt this girl awful young to have a 12 old son deb from ky

smithlme · November 2008

Your sister needs a second opinion, and now. There's plenty more to be done...

Deb, I was 16 when I had my oldest son. It's possible for her to have a 12 year old...

Linda

curlieqs · November 2008

I have stage IV mets to bone and I am currently on 6 months of chemo. I am 35. THERE is something to help and your sister needs to get another oncologist ASAP. My cancer is very aggressive as well, I went from a stage II to a stage IV in a few months and am responding well to Taxol/Avastin/Zometa. Please help her look for another doctor before the cancer gets out of control.

Best wishes

jpmom3 · November 2008

Sorry, I've been off for awhile. She had just turned 15 when my nephew was born; surprise for us all! She started her care at our local OPIS center, with a local doctor; we begged her to get a second opinion from the start, but she felt comfortable with the doctor and her nurses over there. They didn't seem to be very positive from the get go, they at first told her surgery wasn't an option for her, changed their minds about 3 months after they started treating her. It was only after they told her there was nothing more they could do here that she started to go to Washington Hospital Center to seek out more experts. They told her that basically the cancer has been in her spine from the beginning and that someone missed it on the original MRI, now the only thing they can do is try to relieve some of the pain she is feeling and try to get her walking normally again. Also she has started to have trouble swallowing, is this normal?! She tells me it is from the radiation to her spine, I just don't know what to believe anymore; she has really kept us out of the loop for so long (which granted is alot our fault as well, we should have been more insistent that she let the doctors tell us the whole story, instead of letting her filter info.) Thank you and best wishes to all of you as well.

curlieqs · November 2008

Why is she not a candidate for chemo now? I see she just had it but I am on a chemo regime for 6 months for my mets to spine and bone and do not see why they are not trying that...... It is helping my mets to spine................

Please keep us posted, she is in my thoughts and hope she seeks out more opinions. Medicine has come a long way and to say there is nothing more that could be done is not an option in my opinion.

Best wishes.

Shirlann · November 2008

Oh my yes, we had one gal in a very similar situation, who lived 17 years. They just zapped the bone mets when they popped up and she saw her first grandchild.

Go somewhere else, to a super-duper cancer center like Sloan-Kettering, Dana Farber, MAYO, etc. They should be able to do more for her.

Gentle hugs, Shirlann

jpmom3 · November 2008

Thank you all so much! I will keep on her to keep trying other places. The oncologist won't do chemo again because they say that her body can't handle another round of it. The last round caused some heart damage, etc. Part of me wonders if the fact that she doesn't have insurance (state cancer grant, that's all) and a rack of bills has anything to do with the lack of options she has~ I hate to think like that, but I know that medicine is a business like any other and that cancer is a very expensive illness. Although maybe that isn't fair, they are doing radiation to her spine now to relieve the pressure. She is back in the hospital tonight, I'm not sure how long this time, because she is in alot of pain and unable to swallow. She told us that this is normal with the radiation, I hope she is right! Thank you again for all the positive words and encouragement. It amazes me how many strong and wonderful people there are on here! God bless you all!

Jess

ibcspouse · November 2008

Heart damage is not uncommon with chemo.(estimated up to 30% have it) This is generally not permanent. The treatment is a beta blocker and ace inhibitor. Most of the time if the cancer is real aggressive, they will switch to a chemo that is less toxic to heart. In my wife's case, they stiched to Ixempra and Xeloda. This is not a reason to stop treatment. Not unless they have done a bunch of heart test including a Cath.

SuzShea · January 2009

Jess - I just read about your sister. She needs to find a new oncologist ASAP who is up to date with the latest treatments. I was dx in 04/07 with Stage IV BC with mets to my ilium. I finished chemo (Taxol, Carbo, Avastin & Zometa) and had more mets throughout me skeletal system in 11/08. I am now on chemo again and my oncologist is treating the cancer as a cronic condition. Bone mets is certainly not the end! Get your sister to another oncologist.

Stay strong and God Bless!

Suzanne

SoapMaker · January 2009

Your sis REALLY needs to get to another onc. There are good oncs and there are the other ones; the ones who will give up on a person at the drop of a hat. Sounds like that is what you sis unfortunately got. If she only has a met to the spine and the rib...she has a great chance to get those areas resolved. I am surprised he didn't have her get rad treatment to her spine met, to alleviate some of the discomfort. If she has a university hospital in her area, take her to the cancer clinic. They have to take her, no matter what. My best to your sis.

-----------------------------------------------------------------------------------------

Where is the cure???

www.truefacesofbreastcancer.org

mets to spine

Comments

Categories