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

rdeesides

Can someone explain what bone mets feel like? I have dull achy pain in my rib cage. I am also having pain in my abdomen and an abdominal CT scan was clear, so it's possible this is something not BC related, but I am on the fence what direction to go. Thinking maybe see a gastro doctor and go from there? I am TN and the first few years are when I'm likely recur or progress so I am super worried. When I asked my doctor what signs to look for, she just said "don't worry, we will be monitoring you". <sigh>.

Rebekah

MJHJAN1014

Rebekah,

This is a tough question to answer as the experience of bone met pain varies. For me the pain was not dull and moving a certain way could set it off. it also travelled around as the mets reared their ugly heads. My diagnosis came when I had a CT with contrast looking for a possible blood clot due to the "chest pain".

What side is the abdominal pain on? The right is where the liver is, of course, and I did feel tender in the right lower rib area when diagnosed with liver mets. How long have you had the pain? I think our rule here is if it doesn't go away in two weeks, go to your oncologist. Sounds as though you have already done this. Have they drawn serum tumor markers?

The best advice I can give is not to let this drop until you feel satisfied. Have you seen your PCP? You know your body and you need to persist if the pain does not resolve on it's own.

Best, MJH

rdeesides

Thank you so much for your response MJH. Pain is on the left side. MO has not drawn tumor markers. I will ask about that. Perhaps a PCP visit is warranted. CT scan was of pelvis and abdomen, but did not include rib cage. I feel like I need to have that looked as well. I am so emotionally exhausted from all the treatment and tests and I worry about going down a rabbit hole, but something is definitely not "normal". I will push for more tests. Pain comes and goes and sounds like what you are describing, depending on how I am moving but I may not feel anything for a day or two and then it comes back. Will keep you posted.

Rebekah

siddhivinayak

hi Rebekah i have rib pain from almost two years as you described.My ribs always feel sore to touch.I have complaint about it several ti.es but all times they say that this is due to radiation therapy.Soreness has not increased or decreased but it is constant.I was also concerned but i have. whole body pet/ct 2 times for different reasons so i am at peace now that it is nothing. You also had radiation then it could be because of that Radiation.Dont worry too much about that.

Lea7777

May 26, 2018 04:32AM Lea7777 wrote: Are you aware of anyone who started out with Lobular Carcinoma in Situ (LCIS) or Atypical Neoplasia and eventually ended up at Stage IV Breast Cancer?

I asked this of my breast surgeon and in 22 years she could not remember anyone. I will ask this of all the medical professionals I encounter going forward.

MJHJAN1014

Lea-have not heard of any cases like this, however, my experience is pretty much limited to these boards and a few personal friends.

Best, MJH

rdeesides

Thank you for your response Siddhivinayak. My pain is not on my radiated side. I did see PCP on Fri and she ordered chest and bilateral x-rays, both which turned out clean. Since there has also been some pain in abdomen she referred me to gastroenterologist. She suggests I push for bone scan.

If i had mets in ribs, would an x-ray show it? I assume not always since bone scans are what MO's order.

R

cp418

'Remarkable' therapy beats terminal breast cancer

https://www.bbc.com/news/health-44338276

siddhivinayak

Hi Rebekah nice to hear from.Don't jump to the conclusion.It could be something else .I have sore ribs on both sides also on non-radiated side.But this pain is felt only if i press on it i.e at the ribs.Plus i have gained a lot of weight and one side of my abdomen hurts allt he time whenever i press on that concerned area in abdomen.But as i have 2 pet/ct and nothing came up.Thats why i think it could be nothing.

Yeah Bone scan are gold standard for detecting bone mets but pet/ct can also show pre mets changes.Hope to hear good from you.

Best of luck.

Sid-

BinWA

hi this is first time I've posted so not sure if I'm in the right place. Here I go. I'm 18 months after lumpectomy, chemo, radiation for lobular breast cancer. I was having hip pain so had CT scan and MRI. "Highly suspicious for bone mets lesion" turned up on my sacrum. I had a CT guided bone biopsy. Tests came back normal. Do you think this is reliable or could they just have missed the lesion? Thanks,

dlb823

Hi, Bin. I'm so sorry about your CT/MRI report and the need for a bone biopsy. As long as the bone biopsy was sent to a reputable lab, the results should be accurate. Bone is a bit harder to do a pathology on than soft tissue because some of its characteristics can be lost in the degrading (breaking down of the bone) process if not done carefully. But, that said, I have a feeling what happened to you probably is that the reading radiologist jumped to an overly aggressive conclusion ("highly suspicious for...") based on your bc dx, and that the spot is B9. Have you been having pain there, or what led you to have the CT/MRI in the first place?

Akhan

Hi, I am wondering what goes into the decision process for first line treatment because there are so many options. Why is one chosen over the other and what do these conversations with your doctor look like?

dlb823

Akhan, I think there are several possible influencers — anything from habit (probably not a great one) to success with previous patients to hopefully recent trial outcomes, assuming an onc is up on leading edge research. Then there’s the patient’s individual factors, from location of mets to things like age, hormonal status (very important), and any pre-existing conditions.

Catsme

Hello, I'm hoping to get some help with an ongoing concern. Since my diagnosis I've tried to control my panic around any new symptom that comes up. I am working with a councilor and have come to understand that one of the emotional drivers of this reaction is the fear that I'll over look something and by the time I get it checked out it will be "too late".

Does identifying mets early have an impact on outcome?

What advice would you give regarding when to see my MO or BS outside of my regular appointments if a new symptom does pop up?

Thank you!

dlb823

Catsme, I asked the same question after my tx for early stage bc, and a very wise psychologist @ UCLA gave me this coping strategy. Give any new symptom or concern 3 weeks to resolve on its own. If it doesn't go away in that time frame (most will), that's when it's time to get it checked out. Of course severe or unrelenting pain needs immediate attention, but most things that cause anxiety re. mets seem to resolve on their on own.

As far as identifying mets early having an impact on outcome -- probably not in the bigger scheme of things. There probably are exceptions, especially if someone was to let a dx go far too long. But the flip side of the issue is over screening which isn't good for any of us either, both in terms of too much radiation and anxiety, not to mention a possible recommendation for a biopsy for things that have nothing to do with bc, but based on our hx's aren't excluded as easily as they might be for someone else. But when someone is re-dx'd probably won't change their tx plan.

Hope this helps!

Murfy

Akhan, there are established guidelines that oncologists follow that are regularly updated based on yearly recommendations of a panel of respected national and international oncologists who follow clinical trial results and publications. The most recent recommendations came out in April 2018. Your oncologist will follow a 'flow chart' and base your treatment on your particular case (ie, type of BC, presence of hormone receptors, lymph node involvement, tumor size, grade, mets location, etc). It's all very regimented. I, a former scientist, researched the guidelines before I saw my MO (I'm OC that way!) and he followed them exactly. Peace of mind...

Laura

pajim

Catsme, there is no survival advantage to "catching" mets early. At least none that research has shown. That's why early stage survivors don't get regular scans or anything like that. All that radiation can cause cancer!. The best early detection of mets can do is prevent something 'bad' from happening -- often a fracture of some sort. But fractures heal. And treatments kill off the cancer cells, no matter how many there are.

[I want to separate my comment on early detection of mets from early detection of cancer itself. Detecting the cancer itself early lowers the risk of MBC]

I would agree with Deanna's advice on symptoms 200%.

Every woman who has early stage breast cancer has a touch of [something like] PTSD. It's inevitable. It sounds like you are working through yours in a positive fashion and I wish you the very best of luck.

dlb823

Akhan, I just want to pop back and comment again re. Laura's (lmurphy) comment on tx being regimented. That's true for early stage bc. But once you hit mbc, from my experience, things get a bit more subjective. For example, the last time I had to change meds due to the one I was on not working as well as it had initially, I was given 3 options (UCLA), including a trial, but the decision was left to me. Not sure which scenario you were asking about -- early stage or mbc -- but I'm glad Laura gave you the input she did in case you were asking about early stage. The one exception with early stage tx would be if someone is post menopause and going to start an A/I after active tx. In that case, of the 3 aromatase inhibitors available, I don't believe there is a standard of care, but that it's pretty much up to the oncologist's discretion which one he or she chooses.

Catsme

Thank you all so much! Your words of wisdom and empathy help alot. I love the idea of giving new symptoms three weeks. It is something I think I can do. I do have long stretches of time where BC isn't top of mind (it's always in the background ), but it seems a simple heat rash or new ache can send me down a dark path.

Thanks also for the education on mets, and "early detection" of them. Different scenario than early detection of BC. It sounds like the best plan is to keep up with check-ups, stay as healthy as possible and know there are treatments if mets do develop.

You all give me hope that no matter what, even I can get through this.

Thank you

Akhan

Thank you lovely ladies - dlb823 and Laura I just wanted to be prepared for conversations but now I am more comfortable ! Thank you for sharing your wisdom

Murfy

Akhan, in addition to what Deanna said above, I've thought of another exception where you may be able to provide your preference in the first line treatment process. My surgeon suggested neo-adjuvant treatment (chemo before surgery), but I knew I wanted a mastectomy vs lumpectomy, so wanted surgery first. Depending on size of your tumor, you may have surgical options too.

Best of luck!!

Laura

nonomimi5

Hello. I am half way done with my rads (finished 8 out 16). At each step since Dx, I prayed that I would qualify for the easiest way out - first Lumpectomy vs Mx, Radiation vs Chemo, the accelerated rads vs the full 33, and next, 5 years vs 10 yrs of Hormonal Therapy. I am 54 and my Oncotype is 17. I am still learning as I go, and there are so much I still do not understand. Sometimes I wonder if I should even be making these life changing decisions when I am so new to this.

My question to all of you brave ladies is, you are much more experienced and knowledgeable than I am, and if you had known everything you know today at the time of your first Dx, would you have done anythings differently?

Thank you,

Mimi

helenlouise

hi Mimi,


I can relate to what you say. It's a huge forced learning curve that is daunting and can be totally overwhelming. Some people have others who happily take the role of managing information and advising on decisions but if you don't have an advisor / advocate, it just you. Have faith and don't second guess. You will make the best decision for you. If you are unsure take time and seek counsel.

Done anything different had you known??? Hmmm. The only value in looking back is ensuring moving toward any lessons learned are used! Sometimes there are no lessons just bad luck.

Wishing you well.

Houston2016

Hello Everyone, thanks so much for your responses. They are very helpful. Anyway, I been sick with a cold since May 2, then bronchitis, after that, for several weeks. I went to PCP and mentioned the waist discomfort. So I done the lumbar X-ray results showed Moderate Osteo-arthritis. PCP told me to take Alleve ?? BTW I have a history of degenerative disk disease back in the 90's I guessed caused by the epidural received during childbirth. So I went home and did some research on bone loss. BTW, all this aches come up when I started taking Anastrozol since 11/2016. So now my bone loss is another issue that possibly aggravated degenerative disk disease. I found the ad about Strontium Citrate. So I've taken since early May along with Calcium. My OC said it doesn't hurt to try it.

I have another issue after my coughing stopped. I had a UMX in 11/16 but did not have recon so I still have the TE on my left chest. A couple of days ago I felt sensation under the base of the TE, then the next day I noticed the swelling near the left armpit and fluffiness under it. I planned to get an US to check it out. But I just went to see the OC for physical exam Monday, 06/04 and I guess it wasn't swelling then otherwise she should have said something.

Another I wanted to ask my OC is if I can have the tumor marker blood test. I have read about and seen people with early stages BC have it done. My OC just find every which way to deny me the tumor marker test. She said insurance might not cover it unless I show symptoms or I have Mets. Is this true? Why some drs do them and some don't. I know TM is not 100% but it could raise a red flag. Thanks for all inputs.

Houston2016

in response to Mimi. Yes, I wished I had done something differently and that is go see the Dr. Immediately after discover a small lump in my left breast in December 2015. I was in denial not thinking I could have breast cancer. Also, I had no idea hormone are linked to breast cancer. I wish the PCP advised me about it or warn me about any info about cancer to look out for. The lack of information is what we're facing and I have to scourge to find about things. I think there's no magic formula and it all depends on your BC and do the best you can to prevent a recurrence.

Mom2fourplusmore

I apologize if this is the wrong area to post. I was diagnosed 2 years ago with stage 1 on the left side. Today I found a lump just about my clavicle bone on the right side. How likely is that to be BC and would that make me stage 4 or just a reoccurrence? Or could that lump be a DVT? Or something benign? Seems odd place. Yes I will get it checked out but id like to have an idea of what it could be before I go in. Thanks. And sorry if this is the wrong board

dlb823

Mom2fourplus, you're in the right place! So what you're feeling could be any number of things. BC does sometimes show up in chest nodes in that general area, but not sure you would feel something that distinctly. It could also be something related to your surgery or recon. Fat necrosis is the most common type of lump. Just not sure if yours is close enough to your original surgery site to be that. It can also be a benign cyst, or a totally new bc lesion (vs. a recurrence).

If I was in your situation, I would make an appointment with your BS to check it out. Not suggesting this because I think it's overly concerning, but there's no use worrying about it or poking at it (something I would do) and possibly irritating it. Just get it checked for your peace of mind.

As far as would it be Stage 4 if it's bc -- the good news is even some recurrences in chest nodes are no longer considered mbc or Stage 4. Some were in the past, but more often they're now viewed as local recurrences.

Hope this helps, and please let us know what you find out! Hugs, Deanna

MinusTwo

Seconding what Deanna said.

I had a mastectomy for DCIS w/no further treatment necessary. Two years later I found a lump by my collar bone and went to my MO. BC was in a lymph node but it was called a local recurrence, noted as Stage 3. After treatment & surgery, I have been NED for 4 years now and there's no indication of further mets.

Hopefully yours is a benign cyst, but do get it checked out for your own peace of mind.

Mom2fourplusmore

Deanna, thank you. I doubt it’s fat necrosis because it’s on not near anything that was cut. But who knows. I think you’re right I will have to have it checked. Which Dr do I call? GP, surgeon, oncologist? Not sure who does what now.

Minus2, my lump is on the opposite side from the breast cancer. So would that be like you? And I am taking my daughter to Paris in a little over a week. Do you think it’s ok to leave it alone until I get back? I don’t want anything to mess up my time with her.

MinusTwo

Mom - Yes, it was not on the side first diagnosed, but since I had a bilateral mastectomy the supposition was that a 'micro dot' escaped even though I had large clear margins.

Are you still seeing your oncologist? That's who I'd call first. The MO usually drives the bus. Actually you might want to call the one who you have the best rapport with since they could be reassuring. But with your trip coming up so soon, I'd go and have a wonderful time. All you have to do it not worry. I know - easier said..... But it's unlikely they could get tests scheduled and results back before you go - unless it's just an ultrasound. My oncologist told me to go ahead with a trip I had planned 3 weeks after diagnosis before I started chemo.