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Topic: Scans tomorrow - may have progression

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

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Posted on: Jun 20, 2007 03:09PM

ming wrote:

I go for a pet/ct scan tomorrow am. My last one was in April and was stable. I had an sppt with the surgical onc to consider surgery on the reduced primary tumor. He noted that my underarm node was palpable. Previously it had been resolved along with a mediastinal node. There was also pain upon pressure over my chest. Previously I had no pain from my sternum mets. My liver enzymes have moved up to the high category and tumor markers have moved up from 28 to 38. Nothing is overwhelming but looks like this could be progression after 20 months on femara and zometa.

I have an appt with my onc for Friday to get the results before she goes on vacation. I've got a second opinion set up for next Friday. I've also got an appt at Sloan-Kettering in July.

Just wanted to post so that you guys can be praying for me. I guess it's possible that there are other explanations for all the little things going on, but I've got a feeling things are different.

I appreciate all of you so much -
Ming - my grandmother name Dx 10/17/2005, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR-, HER2-
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Posts 1 - 24 (24 total)

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Jun 20, 2007 04:07PM LuAnnH wrote:

Keeping my fingers crossed that you are still stable!

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jun 20, 2007 04:40PM katie11 wrote:

Dear Ming,

You are right - there are other explanations for the little things going on, but I know how you feel and it's easy for us to think the worst.

I will be thinking of you and sending loads of positive vibes your way for stable, or even better, NED!

Hugs,

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jun 20, 2007 05:06PM boobbuster wrote:

Ming-
I've sent special prayers up today with your name in the subject line. God is able, Stephanie
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Jun 20, 2007 07:19PM WendyV wrote:

Lots of prayers coming your way Ming!! I will be praying and hoping that all those "little" things can be explained by something else. And tumor markers can fluctuate especially when they are in the low numbers. I hope things go well tomorrow and that you don't have to wait long for the results. Keep us posted!
Sending lots of strength, love and hugs your way!
Wendy
Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.( bone,liver,brain,lung mets) Dx 10/9/2006, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jun 20, 2007 08:58PM KariLynn wrote:

Good luck with your scans! I'm glad you will get the results quickly and will hope that they are stable at worst.
Kari
If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying? Dx 6/2/2005, IDC, 2cm, Stage IV, 14/25 nodes, mets, ER+/PR+, HER2-
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Jun 21, 2007 08:23AM Fitztwins wrote:

You got it dear. remember results from a scan is the map to the next procedure.

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)
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Jun 21, 2007 09:04AM scarednancy wrote:

I will have you in my thoughts and prayers. Please let us know how your results are.
Take care,
Nancy
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Jun 21, 2007 03:05PM ForTheMoment wrote:

Thinking of you Ming and hoping for great results.

Hang in there... Hugs!
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Jun 21, 2007 03:29PM lexi4 wrote:

I am hopeful for good results, too. Please know that you are in my thoughts.

Hugs,
Lexi
Dx 8/22/2005, IBC, 3cm, Stage IIIB, Grade 3, 5/6 nodes, ER-/PR-, HER2+
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Jun 21, 2007 03:38PM GailAnne7 wrote:

Ming
I'll be praying for you to have cery positive results. I don't know how it got started but when we wanted to pray real hard for something, my brother called it "doing a hoody dance". The name makes no sense at all but I'll be doing a hoody dance of prayer for you.
Take Care
Gail in NJ
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Jun 21, 2007 04:04PM Calico wrote:

Ming,
prayers are coming your way!

Hope you are well!

God Bless
There are three kinds of lies: lies, damned lies, and statistics Dx DCIS/IDC, Stage IIA, Grade 2, ER+, HER2-
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Jun 21, 2007 04:26PM AusAla wrote:

Been thinking of you today, Ming. Hope your scanning session was uneventful. Praying for excellant results along with the rest of the girls!
Bethie
"I don't want to be in a battle, but waiting on the edge of one I can't escape is even worse! Pippin, Lord of the Ring: Return of the King Dx 5/13/2002, IDC, 2cm, Stage IV, Grade 3, 3/17 nodes, mets, ER+/PR+, HER2+
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Jun 21, 2007 04:42PM luvcats wrote:

You are in my thoughts.
Jacqueline
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Jun 22, 2007 06:59PM ming wrote:

Thanks for everyone's prayers and good wishes. Yes we have some progression - the sternum mets are bigger and higher SUV nos, the node under my arm shows up again as cancer on the scan and the breast tumor is more active too. So it's goodbye to femara and hello faslodex shots. I'll be going back in 6 weeks to see if things are responding. No surgery or radiation right now while we see if we can get further shrinkage.

The question of whether to remove the primary tumor when mets are discovered at the same time still doesn't seem to be resolved - they are still not sure which is best. Also to save radiation for some later time or to zap at this point is something they are not sure of. We go for a second opinion next week and to Sloan Kettering in July.

God bless all of you for your support!
Ming - my grandmother name Dx 10/17/2005, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR-, HER2-
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Jun 22, 2007 07:08PM LuAnnH wrote:

ming,

sorry to hear that, sounds just like what I just had. I have had two faslodex shots now and a few doses of herceptin and my sternun is not longer painful and I cannot feel the lesion there that was sticking out before. I hope faslodex helps you out too.

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jun 23, 2007 06:43AM WendyV wrote:

Ming - I'm so sorry to hear about the progression. You have so many decisions to make and that can be so difficult and stressful. I too was diagonsed with mets on initial diagnosis. I had mets to both my liver and bone. I went to a local cancer center 45 minutes from my home and then also went for a second opinion at Johns Hopkins. Of course because of the met to my liver, surgery to remove the breast tumor was out of the question since they needed to get the liver mets under control. The doctor at Hopkins had told me that if I only had mets to the bone, that surgery to remove the breast tumor would have definitely been a treatment option since bone mets only has a much higher survival rate than those who have mets to organs (gosh I hate stats!). Fortunately I had great response to my treatment and in April was able to have a mastectomy. While I know that there is no evidence that the mastectomy will increase my life expectancy, emotionally it was the right thing for me to do. With stage IV, so many doctors are concerned with quality of life, taking treatments slowly and not doing anything that isn't absolutely necessary. For me, at 38, I knew that a mastectomy wasn't going to change my quality of life and I knew that I would recover quickly. My breast didn't define who I was, and knowing that the breast tumor is gone was such a good feeling even if it doesn't change my time here on earth - I know that I have done everything I can to eliminate this beast from my body. And--- as of my last scans the only tumors that can be seen are 3 little 3mm lesions on my liver, so I am pretty excited these days. And as I continue to get my tissue expander filled, I'm actually considering getting a little something out of this horrible experience - cleavage!!

Ming - I wish you all the luck in the world as you meet with your doctors and figure out what the best treatment choice for you is!

Take Care
Wendy
Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.( bone,liver,brain,lung mets) Dx 10/9/2006, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jun 23, 2007 02:22PM katie11 wrote:

Dear Ming,

My thoughts are with you - progression is scary but things can turn around again very quickly and improve enormously. I was also dx with mets to bone and liver at presentation and the first chemo I took (the red devil) led to some progression. My onc had also been planning on removing the original tumour, but it was all postponed when they found that things had progressed. My second lot of chemo (taxotere and xeloda) worked for me though and, after 4 months on this combo, things were looking so good that they decided to go ahead with the mastectomy. The reasons for going ahead with the surgery were similar to Wendy - I want to do everything I can to keep going as long as possible - I have kids to bring up and way too much living still to do! My onc actually told me that some recent research out of Switzerland had suggested having the original tumour removed even when mets are already at large can help long term survival and that was good enough for me!

Unlike Wendy, they haven't started filling the tissue expander yet, but I am really looking forward to that cleavage, too!

Hugs,

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jun 26, 2007 06:10AM Calico wrote:

Ming,
I am so sorry to hear that. I am trying to locate an article on this main board, which talked about 40 % better outcome if mast with stage 4 but I can't find it. I hope you'll find answers.

I keep praying for you.

God Bless
There are three kinds of lies: lies, damned lies, and statistics Dx DCIS/IDC, Stage IIA, Grade 2, ER+, HER2-
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Jun 26, 2007 11:46AM Shepgirl wrote:

Ming; not the best news but not bad either! Go to Sloan and see what they think. I would ask to stay on the hormone (Femara) ONTO of Faslodex while waiting for Sloan Appt. Current studies support having the surgery - and the timing seems right for you. If you need to move off Faslodex, chemo is tougher to do with surgery! I would hope Sloan would tell you that! Are you seeing Dr Modi at Sloan??? Really push the questions!!!!!

Dx 12/23/2004, IDC, 2cm, Stage IV, Grade 2, 2/22 nodes, mets, ER+/PR-, HER2-
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Jun 28, 2007 05:35PM ming wrote:

Thanks for everyone's support. Tomorrow I see another onc for a second opinion. They have already told me over the phone they usually do a loading dose on faslodex. I will talk to her tomorrow about keeping Femara going as well on top of Faslodex. Yes I have been able to get in with Dr. Modi at Sloan on 7/25 - just bought plane tickets today!

As to the surgery - I have read lobular is best treated by a mastectomy rather than lumpectomy. My docs keep steering to lumpectomy and no surgery on right breast at all. I would love to find that site about 40% better survival with mastectomy.

Thanks again -
Ming - my grandmother name Dx 10/17/2005, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR-, HER2-
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Jun 28, 2007 05:48PM Calico wrote:

I found one article

http://www.nature.com/ncponc/journal/v4/n1/full/ncponc0668.html



God Bless
There are three kinds of lies: lies, damned lies, and statistics Dx DCIS/IDC, Stage IIA, Grade 2, ER+, HER2-
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Jul 1, 2007 01:47PM ming wrote:

Thanks for continuing input. I saw another onc for 2nd opionion and have switched over to her for treatment. She explained things that I've had to spend hours researching to find out. She has changed my faslodex to have two doses in the first month then montly thereafter. She is also changing my zometa to monthly instead of quarterly.

As to surgery and radiation - she is another one who thinks we sould keep the primary and not radiate at this point. SHe knows the arguments and srudies about advantages of removal but thinks the value of being able to manually check for progression will improve how quickly she can tell if a drug ahs stopped working.

She is familair with working with sloan kettering and so maybe they will disagree with her and change her perspective after my appt with them.

She really talked with me and my husband. Thanks to those who have been encouraging me to find another onc since my old one didn't say much or educate or give options.

Thanks for everyone's support and prayers and ideas.
Ming - my grandmother name Dx 10/17/2005, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR-, HER2-
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Jul 1, 2007 02:07PM katie11 wrote:

Dear Ming,

Your new onc sounds wonderful and obviously gives you new confidence, which is so important in dealing with this dreadful disease. All the best and let us know how the treatment goes.

Hugs,

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jul 1, 2007 03:44PM LuAnnH wrote:

Glad to hear you found an onc you like. Having faith and confidence in your onc makes a huge difference in this disease.

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+

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