If you are not Stage IV but have questions, you may post here
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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?
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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.
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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!
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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!
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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
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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.
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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.
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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
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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
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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
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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
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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.
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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.
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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.
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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
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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
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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.
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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.
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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.
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I had a lump in that area prior to my BC dx and they were able to do an ultrasound to determine it was fat. I was worried at the time as I also have experience with thyroid cancer from 1996. I was told that this is a fairly common site for people to develop small lumps as they get older (i’m 44 now). Also it was a good thing if it felt like a pea and rolled a little vs feeling like an immovable raisin. We didn’t biopsy as the area is highly vascular.
Go on your vacation and enjoy that time. When you’re back, get it looked at. (Or make the appointment now for after your return and rest easier knowing you’ve taken an initial step.
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Minustwo and Jennsgotthis, thanks for the reassurance. I do have an appointment on July 25 so it’s a month away but it’s only a few days after I come back. When I was diagnosed in 2016 I had a trip booked for my family to go to Europe. I was hoping to still keep that trip but the mastectomy was brutal and I missed the trip. I lost all the money I put into that trip. I was devastated on so many levels. So I don’t want to end up with the same issue here. It’s my daughters 16th birthday and she’s always wanted to see the Eiffel Tower. I want to be the one to see her face light up when she’s standing up at the top looking down at all of Paris. That moment isn’t so important for me. So let’s hope the trip goes well and this lump magically disappears
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In reply to the post asking would you have done anything differently:
Yes! Twenty years ago when I was 39 , I would not have trusted or listened to my gynecologist who upon discerning a lump in my breast said, "oh you're too young to have breast cancer and you have a history of fibrocystic disease in your breasts, so it's nothing to worry about." Thus I delayed a year until I could clearly feel a hard lump in my breast and insisted on getting a mammogram. By then it had spread to my lymph nodes.
Sadly I am facing nearly the same situation currently. As a 20 year survivor a new mass by my collarbone has been discovered that upon ultrasound was described as "suspicious for a pathologic lymph node" and recommended for a biopsy, which my family doctor is being exceedingly slow in scheduling because she doesn't seem to understand that ER/PR + cancer can indeed reoccur many years later, especially if your first incidence was age 40 or younger.
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Here's the question mimi asks: “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?“
Its a great question. I've had an exceptional response to treatment, stable since the first year of diagnosis in 2011. It really is a process where you learn as you go, and at first, you cram every day to get information and advice to find the best approach, the right treatment. Its almost unavoidable, the cramming. Everything goes pretty fast and speaking for myself, I was scared! I wanted answers and treatment now! At times, there were so many different directions to take and none were more right or wrong. They were all just different avenues.
With good response to treatment, not much I'd do differently. However, the oncologist never had me get a bone biopsy. I was diagnosed with mets after a bone scan showed suspicious activity, and a follow-up pet scan read by radiologist said it was bone metasteses. I'd had numerous tests up to that time, and the onc maybe didn't want to put me through another. I don't know. Then after I had chemo, it showed shrinking results on follow up pet scans. But a part of me.....because of my good response for so long, a part of me wonders if I am an imposter. Is what was seen truly bone metastases? Maybe it has not progressed yet because I didn't have the biopsy so it didn't invade the cancer and make it “mad". I also chose not to have the sentinel node biopsy; why invade them, since MRIs showed my lymph nodes were not enlarged. But a teenie tiny eensie weensie itty bitty part of me wonders if I havent progressed because it wasnt truly mets. And a bone biopsy would have confirmed that.
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Hi dlb823, Thanks for the response, sorry it took so long for me to respond. I lost track of my initial post. Anyway, I posted about a month ago asking if you all thought that the negative results from the bone biopsy on my sacrum was reliable. Well my Docs decided they weren't reliableand called me back for second bone biopsy. I'm waiting for results again. Thanks for the support.
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divine - looking at your bio, you had a lumpectomy in 2010 before you found the lump and your diagnosis of stage 4? Is that right, or am I reading that incorrectly?
The lump was how big? Why was a Pet scan called for? Was an MRI called for to determine tumor size and how many tumors? Did you have an ultrasound and needle biopsy of that tumor/tumors?
Prior to surgery, you had chemo to shrink the tumor? There seems to be a lot of discussion about chemo before surgery not being a good idea? Some think it causes cancer to spread as it excites the tumor?
When you had surgery, are you saying they did not check your sentinel node because tests showed little swelling?
You have gone a long time with advanced cancer which is wonderful for you. You are suggesting you may have been misdiagnosed? I am curious about your medical journey as to the sequence of events and outcome.
So as an example, an ultrasound and needle biopsy was ordered for me. I had 3 tumors which we knew from mammogram. However I wanted a lumpectomy, but first they needed to determine size of tumors to see if they would have enough breast left over which they determined they would not. Also they did a biopsy on the largest tumor to determine grade and gather information. I personally would not allow that again as I felt it significantly annoyed that tumor. Also, my lymph nodes did not look swollen, but they tested the sentinel and it did have cancer. Then they took the first course of lymph nodes which was 11 additional. None had cancer. I did not have an MRI. I am extremely claustrophobic. We tried. I could not breath.
Hope my questions make sense and are not out of line.
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redgirl, I don't mind the questions.
Here is the sequence of events. I found lump in breast, about 3 x 2 inches, and a needle biopsy found it was malignant. It was determined to be invasive lobular carcinoma. I had an MRI to map things out, I guess, and see if there was bc anywhere else; there wasn't and it showed no lymph node involvement—(erroneously thought that was a good sign....). I wanted neoadjuvant chemo to try to shrink the tumor so I could have a lumpectomy rather than mastectomy. The oncologist ordered a bone scan prior to starting chemo just as a baseline. It showed some suspicius activity, so the PET was ordered. That is when mets were diagnosed. Hip, rib, scapula and some scattering along the spine.
So, I was stage iv bc from the start. I had the neoadjuvant chemo which shrunk tumor quite a bit, but not all. Like a small marble left I could still feel.Then I had a lumpectomy. The first surgery did not get clean margins, so I had a re-excision that resulted in clean margins.
I was the one who decided not to have a sentinel node biopsy. The breast surgeon wanted to do it, but I'd done some cramming research and based on what I read, felt it was unnecessary as I was already dx with mets.
I forget at what point the tumor/bc was found to be er+, her2-. Needle biopsy maybe?
After chemo, I had 33 rounds of radiation then went on Arimidex. I know there are other women who have long long years of stability on it. May not be the norm, but does happen. I also have a brother who was dx at age 18 with terminal testical cancer spread throughout his body, given a year to live, and he survived and thrives to this day—now in his 50s. So there's that.. And a cousin dx with ovarian cancer, not sure her details, but it's not an easy one to survive, yet she has for many years. Their experiences give me hope.
I know there are other women who were dx with mets only thru PET scans and no biopsy, because I once asked on this forum about it. I have all my scan reports, and they show decreased activity over several years, so definitely, the chemo was working, the arimidex was working so that the scans showed less uptake in the mets areas. I am treated at a large Pittsburgh hospital with a good reputation, and I have 99% confidence in them......
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redgirl, I had a horrible MRI claustrophobic incident, so I can understand how you feel!
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I posted a while back that I was having pain in my ribs and doctor ordered chest CT scan. Scan came back clean which is great, but I am left with the question of why I am having pain in my ribs. I am wondering if all the chemo I had late last year could just be causing lingering issues.... Anyway, just wanted to let anyone that was following know.
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Divine - fascinating history in your family. Perhaps your family are those with a nucleolus that no matter what means long life. I know a lady, now 92, that was rail thin, ate very little and not healthy, drank and smoked all day and had 6 children. She should have died a long time ago, and yet she is still here.
Just for the record, I find stats, science very interesting. I am a person that wants to know why and will search looking for clues. Every day with this research on cancer, I find a tidbit that makes me excited. So I did not know that cancer cells only use glucose as their energy source which makes them very different from normal cells. So I fast every day, 13 hrs plus, omit as much sugar as possible, which essentially may starve my cancer cells. Thanks for your response. Best.0 -
redgirl, yes, maybe there is something in my family's dna that sometimes won't quit. The same brother survived two 100% blocked carotid arteries several years ago. He should/could have stroked out. His surgeon said the body has an amazing capacity to find ways to repair itself, and different arteries took on the work to keep getting blood to my brother's brain. My paternal grandmother that (I share with cousin mentioned) lived to be 102, alert and mobile until her last couple months.
Along with conventional medicine, I like using complimentary techniques. Drinking lots of water, cutting out stress everywhere, several vitamin supplements, etc. While I added more fruits and vegetables to my diet, it would be hard to give up sweets, so I never have. I read many benefits of fasting but couldn't do that, either. Some of my most memorable moments are foods I've eaten! We all must use our own instincts, tho, and learn what works best for us.
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