Bone Mets Thread
Comments
-
Grace - Soft tissue mets generally spread faster and are harder to treat than bone mets. There are good meds that specifically treat bone mets. People with bone mets have a better prognosis relative to people with soft tissue mets. I am not sure that counts as good news, but it's the best I can do for you at the moment. You have cancer. It is really scary. I am sorry you are here.
Bone mets ladies - I just had a really good scan. I started out in January with CT/Bone Scan that showed a 4cm primary tumor, 5-7 lesions in my liver and impacted lymph nodes in my armpit and metasternal lymph nodes. Primary tumor in the breast is smaller and the connected lymph nodes in my armpit are very small. The only remaining possible metastasis is a bit of sclerotic lesion in my sternum.
CT Bone scan in January found nothing. The PET scan in april found mild hyper metabolic activity in my sternum. Here's what they said today.
The plastic sternal manurial lesion appears slightly more conspicuous when compared to prior. although some breast metastases are sclerotic, some treated metastasis become sclerotic as well. As such, the finding is difficult to differentiate. No mediastinal adenopathy, or new osseous metastasis is identified.
My understanding is that you can get a sclerotic lesion when the bone grows back into a gap created by cancer. As a result the evidence of now dead cancer can be more visible than active cancer. The bone growing back into an empty lesion created by the cancer is more dense and shows up on the scan. Or at least that is what I understand. Is that true?
Just trying to understand the scan results related to this lesion in my sternum.
>Z<
0 -
Lynne, I just read your post, it was lovely. I don't know how you remembered all of those details, but I want to add one more.
Our dear 50's girl, Lynne, just helped her husband through a very scary medical condition, without any thoughts to her own health & she is always so encouraging of others & helpful with any information.
It is a pretty amazing group here, I don't know how I would make it through some days without you all. I am feeling stronger each day. Just about time for them to slam me again, hopefully my WBC won't drop as bad with the lower dosage.
good night all & sweet dreams, cheers, dee
0 -
Good Morning, Waking up to reading this lovely thread makes us all realize that cancer does have a perk. Our hearts are so full of gratitude and love to each other that we often sometimes miss that if it were not for this situation we may never haveknown that such strength does not always come from within us, but from within someone else that passes it on to you. To all of you for sharing that, I am so grateful. Thank you.
Lynne, you are so articulate and your words are so healing to all. You are so admired by all of us. Thank you!
I always love to share stories.. Although this has nothing to do with breast cancer, I have a friend that was diagnosed with stage 4 lung cancer over a year ago. It was very aggressive spreading to the bones, brain, and lymph nodes. She did her first line of treatment and achieved great results. 3 months ago the lymph nodes in her neck started to enlarge and because of her diagnosis they tried another drug (keytruda) and that did not work. Scans showed that the cancer had returned to her neck a maybe her spine. She also sees the same original MO that I did locally
- She had a consult at the beginning of her diagnosis at SMK but he was not specialized in lung but in several different cancers and corresponded with her local MO. Both home MO and SMK MO agreed on the next aggressive treatment that was to start yesterday. I was able to convince her that she had nothing to lose by getting a third opinion from Dana Farber. So together we did the trip to Dana on Tuesday. That is how quick she got in. We left at 11:00 am and returned home by 10:30 pm. Again, she was treated exactly like I was when I had my second opinion. They do not think that lung was her primary cancer and that head and neck cancer was the culprit. If this turns out to be the case, this is great news. The first thing they are doing is getting their pathologist to look at the biopsy and she is not to do the treatment that she was scheduled for yesterday. Radiation is all that may be needed. The MO had a big smile on his face and knew of her MO that gave her the second opinion at SMK. He said he is not a lung MO, he treats breast, lung, prostrate etc. He also said to her the same words I share with everyone... the MO is only as good as the pathologist behind the readings. Both of her pathology reports were clear that something strange was going on. Showed different types of cancer from the first biopsy to the second biopsy. My pathology report that I had the second opinion on saved me from doing xeloda over Ibrance- And that's my story for today.
Hugs, Carol
PS- Z- I have fallen off the morning walk routine... Could you please crack that whip for me? Have a fun vacation.
0 -
Lynne after reading your post and having it so eloquently and factually stated I can't help but think we friggin ROCK ! Wow thanks for taking the time and summing up for me that life really does not end with stage four.
0 -
Great news on your scan, Z!!!!! I'll be very interested to hear what your second opinion onc has to say. And yes, healing bone images sclerotic as it fills in. Unfortunately, not all pathologists/radiologists always get it right (healing vs. progression). Our oncs have to be astute enough to figure out what's going on based on our hx, tx, pain level, TMs, etc.
Dee, so glad to know you're feeling stronger! Hopefully the lower Ibrance dose will be much easier for you.
I had my Faslodex & Xgeva shots yesterday. So easy this time. Last time I had one side that hurt for two weeks. Scans @ UCLA tomorrow. Don't know what I dread more, the scans or the drive. Probably the drive.
0 -
checking in. Waving hi
0 -
Hi Patty!!! How are you doing?
Carol, this is for you. I have been walking in the morning around 6:30 am since it has been so hot and humid here and wanted to get out early to avoid the heat. Actually ran into lots of other people who had the same idea. I took this pic of the sun setting just a few days ago. So here is your challenge...... to head out and find something beautiful on your walk.
0 -
Patty - waving back at you.
Z - fantastic results! Enjoy your vacation.
0 -
Lindalou- Thank you- I have to do it tomorrow- I feel so much better if I do- It takes just a couple days off to loose that motivation. I am trying to see the things that are so beautiful around me, instead of saying ok great this is the half way point! I live right on a beautiful lake and every kayak that paddles by I think of you!!
Deanna- Good luck with your scans tomorrow. I know you hate the commute... I would replace a slow ride to the moon over scans
Patty-
waving at you too! I have more family arriving for the weekend later tonight and with them comes my youngest grandchild, 3 year old grandson... he's a handful.
Hugs,
Carol
0 -
Lynne
What a lovely tribute to all of us here in the Bone Mets thread. I for one am completely amazed at your recall for details. Thank you for taking time to be so thoughtful and sincere. This truly is a "safe" place and if that ever changes, there will be hell to pay.
With love and hope for each and every one of us!
Amy
0 -
Quick question, my PET today showed progression at T2 and right pelvis, both small, 9 mm or less. My onc is on vacation so I have to wait for her thoughts but in your experience, is any progression viewed as bad in that Ibrance isn't working, OR can it be viewed as good in that it's kept cancer out of my organs? What are your experiences in this regard? I've been on 100 mg Ibrance for 5 months and 125 mg for 2 months for a total of 7 months. I'm grateful I haven't had worse progression especially since it's stayed out of my soft tissues and organs but am I setting the bar too low and should demand progression-free survival for many more weeks, months or years? Any words of wisdom will be appreciated.
Thank you dear ladies.
Amy
Demand is a dumb word but I couldn't think of another, maybe hope...
0 -
Amy, I once asked my onc what happens if we get mixed results on a scan, because I've seen it happen here and wondered what she does when a drug is clearly working in most areas, but then you have some worsening or progression somewhere as well. She told me -- and of course this is just very general info -- that if it was just a spot or two, she might want to biopsy them to figure out what's going on, but she probably would not simply switch meds. She would just want to be sure that the cells in that area haven't changed from the original dx -- i.e. becoming Her2+ or TNBC, etc.. So that's about all I know. Just that if it's not a blatant progression, staying on the same regimen (at least @ UCLA) can be justified.
So sorry you're in that situation. Hope this helps until you can talk to your onc.
0 -
Deanna. Gl on your scans
0 -
Amy, I can reiterate what Deanna just wrote as being what I was told by my MO. With that being said, did they do a cat scan or a bone scan to go along with that pet? Is this a new area of progression ?
Hugs, Carol
0 -
Good Morning Carol and Deanna and all you lovelies,
Thank you for your comments. I had a PET scan only yesterday which revealed these two new areas. Other areas were stable but the two new spots were our focus of conversation. My general feeling is while I'd like no progression, I'm happy beyond belief to have bone only, still.
Guess we'll wait to see what my onc wants to do. As a footnote, when I had progression last year for the first time, I wondered if a biopsy would be in order. Perhaps we will revisit this.
As always, thank you for your wisdom and compassion.
It's been a tough week for our family. My daughter learned at 17 weeks in her pregnancy that the baby had died. So instead of a well-baby check she was induced, delivered a baby girl and buried her. I mention this only because I've been absent and don't want to appear that I show up only when I want something.
Love to you all.
Amy
0 -
Oh Amy, I am so sorry. One of my best friends went through something similar (but a full term baby girl) with her daughteralmost exactly a year ago. It is a real tragedy and traumatic. Take care of yourself and family. ((Hugs)) and prayers.
0 -
Oh Amy, my heart breaks for you and your daughter! There are no words I know to take this pain away but please know that my thoughts and prayers are with you and your family.
0 -
0
-
Amy, my heart is with your family. Such a very hard loss.
Good luck today Deanna.
Big hugs to everyone.
0 -
Amy,
I am so sorry to hear of your daughter's loss. May your family find peace and healing soon
0 -
Amy,
I am so sorry to read this. Big hug to you and your family.
I would encourage a biopsy and also request to have a CT and Bone scan to confirm what the pet scan revealed. I know many of you have Pet Scans and everyone has to trust their MO and how they diagnosis, but NCI afillated centers are not using them ( i.e.: Dana Farber and UCLA I know for sure are not) and especially for bone- If you have a chance scroll up to Z's last post- she had an example of this. I only share and repeat what was told to me from my MO at Dana, and she is adamant about it each time I ask why they don't use Pet Scans with bone metastasis.
Hugs,
Carol
0 -
Carol,
My center is NCI accredited (KU Med) I get PET/CT every 3 months since mbc dx. MO and RO add MRIs and bone scans when indicated. I'm bone mets only.
Both oncs seem to think the PET/CT keeps track of changes. Last November when I had new, extreme pain in my left femur I got an MRI and bone scan to make sure it wasn't broken or about to break. Otherwise, PET/CT provide the info they need.
Interesting differences in philosophies.
0 -
Amy, I am so sorry to hear about your daughter's loss. My prayers go out for comfort and healing for you and your family. Please don't ever worry about what you post here. We would never question your reasons. We are always here for each other.
Lynne
0 -
Deanna, good luck with your scans. I am there with you in spirit.
Carol, My MO does not use PET scans to monitor bone mets either. It is interesting that MO's opinions vary, but I guess we have to trust our doctors or move on to a new onc. It would be nice if one non-invasive test would provide all the information needed. Of course, it would be even better if one treatment would work for everyone.
Lynne
0 -
Kap- yes CT scan will acknowledge what a pet shows and often Pet Scans are used for a base at the start of a diagnosis . Not at Dana though ? I did not go there when I was first diagnosed. I have asked at least 5 times to two different MO's at Dana F why they don't use pet scans and the last time I asked she said their equipment for bone and CT were much more accurate for them. I am assuming that they like their equipment for the bone scan vs the pet scan?
A good example for me was this: Bone scan showed abnormal uptake in thoracic spine- Ct scan verified abnormal uptake was from sclerotic rims on a healing lytic lesion. They are watching this area very closely.
Hugs, Carol
0 -
Oh Amy that's so sad I'm sorry this happened, this also happened to my mother before I was born and she always said God had a reason to call her early. I know this doesn't really help but as a child it did explain to me loosing a sister I never got to know. ☺️
0 -
Amy, So sorry you and your daughter and family had to go through this. May you find peace and comfort in each other now.
0 -
Amy, so sorry about your loss. (hugs) dee
0 -
I don't know if all NCI centers don't use PET scans for bone mets, as a matter of policy. All of my second opinion work is at an NCI center and they do use PET scans
0 -
My NCI center does use PET/CT scans.
0
