If you are not Stage IV but have questions, you may post here
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Tangandchris, try to get in at UT Southwestern. I had really rare ovarian cancer with lots of complications & they were outstanding and are our NCI Cancer Center.
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Hi ya'll...just checking back in. I got in at Sammons Cancer Center..Dr. Knox. I see her Tuesday morning. I saw my PS today and he showed me scan and explained what they are seeing. There is inflammation on my left breast and above it...and said I also have swelling in my lymph nodes (mammary). He said that I do have significant scar tissue because of the surgeries I've had on that side, but that scar tissue shouldn't be geting bigger like this is. He is recommending a biopsy.When I see Dr Knox Tuesday(she is a BS) I will get her opinion on this too. I'm scared, no one is ruling out cancer yet.
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mum, currently on a capecitabine and tykerb, is having trouble swallowing. It feels like food gets stuck a lot.
Is this common?
Xxx
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Hi Papillon, I doubt it is the medication that is doing this, it is more likely to be the lung mets pressing on the esophagus (the pipe where the food goes through to the stomach). I would make sure that her onc knows of this.
Hopefully she will get some relief soon.
Love n hugs. Chrissy
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ok, thank you.
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Papillon, Chrissy's explanation makes sense, and I also wondered if it might be reflux, which can manifest at times as an inability to swallow. That might be another possible explanation since chemo can certainly mess with the digestive process. But, as Chrissy said, absolutely let her onc know what's going on. (((Hugs))) to you and your Mom. Deanna
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thank you Deanna.
It's all such a pain since she turned pretty much anorexic after her stage 4 diagnosis (due to chemo, brain radiotherapy, cancer, who knows!?) so eating is tough enough as it is.
Thanks for your replies. Wishing you love and laughter xxx
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Hello girls. It will be 4 years in November that I first got on here and asked questions for my dear sister. She had 2 1/2 years of NED before the mets came back to bones and a tiny spot on her liver. When she and I are lucky enough to spend time together she does not want to discuss the cancer or her treatments, so I respect that. She wants to have fun.
She was suppose to come visit this weekend but just texted me...." at the doctors...blood counts are really low. I'm so tired. Besides that they found cancer on my spine and I have to get an MRI tomorrow night. I might need radiation treatments there".
Can you all tell me what this means? Her docs had told her back in June that she should go on chemo, but gave her the option of trying a combined hormone treatment for the summer. She choose that over chemo. Obviously that didn't work and there's been progression.
What happens next? My sister has been a "mother hen" to EVERYONE her entire life. Whenever someone has a problem they call her. She puts everyone ahead of herself. Since her diagnoses 4 years ago she's doubled down on doing things for other people. She has not rested at all...just the opposite. It bums me out that she is SO exhausted from carrying for others...but I know that's the way SHE wanted to spend this time. She is the strong one that everyone leans on. She has worked so hard to make everyone else feel okay about her situation.
I doubt even now she'll put herself first...but I'm hoping. Please tell me what to expect next? Shouldn't she be resting? Having a calm less stressful lifestyle? She just goes and goes and goes....not wanting to disappoint others. I've begged her to slow down...but she dismisses the thought and insists she's fine. Today's text was the first time she admitted how exhausted she is.
I'm really worried and want to help.
thank you so much
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Hi Girls, I am not stage IV but am frightened that is where I am heading. I had very narrow margins, one of which was only 0.4mm. Just wondering if any of you had the same problem & it lead onto stage IV. Desperate to hear from anyone.
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Hi Mollyart, so sorry to hear that your sister has had a progression. The Hormone blockers will make your sister very fatigued as that is one of the SE, not sure what is making her blood count low but it's possible that also is because of the hormone treatment.
She has obviously had some pretty bad back pain and that is how the mets to her spine have been found. Please don't worry about the radiation treatment, that is a good thing as it destroys the cancer cells in that particular spot and is also used as major pain relief.
Her docs will discuss with her what they recommend as far as treatment goes and because we are all so individual, her onc will tailor her treatment to suit her.
Unfortunately the way that stage IV goes is that we find the cancer, treat it until that treatment no longer works and we have a progression then change the treatment until either the cancer no longer responds to any treatment or we run out of treatment available that we can tolerate. The object is to give us extended life as well as quality of life.
All we can do is try to live as normal a life as possible and it sounds like that's just what your sister is doing.
I hope that she responds well to her next treatment so she can come visit you soon.
Love n hugs. Chrissy
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Hi Gretta, on reading your timeline I realized that you are reasonably new to cancer world so the fears you have can be all consuming........really a very normal thing. Even though you have had a close margin doesn't mean that you will end up stage IV.........the margin was 'close' not 'non existant' and that is one of the reasons your docs have decided that chemo is a good thing for you as this will 'mop-up' any stray cells that may have escaped.
There is no telling that at some point in the future you will or won't end up as stage IV.......I for one don't know and neither does anyone else.......all you can do is live your life the best way you know how, enjoy each and every day and then if that point in time comes for you and you find yourself at stage IV, then you can say okay, bring it on as I have no regrets and am ready for a fight. If that point never comes for you, and I truly hope it doesn't, you can look back on your life and say I did everything I wanted to.
Love n hugs. Chrissy
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Hi Chrissy, thanks for getting in touch. Not sure if my reply posted properly last time. Just so terrified I can't shake it . Seeing a pysch but still having huge issues adjusting to this. Thank you for your advice xx
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Gretta your reaction is very normal and something that, with the help of your psych and talking on these boards with others who are going through the same thing will get you through. I understand how stressed and freaked out your are feeling as we have all been in that very same space.
Our biggest fear is having the cancer spread and that is a normal thing, what you have to learn to do is accept the fact that your treatment so far has been right for you.
Love n hugs. Chrissy
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hello everyone.... imagine concerns and questions just like mine have been asked many times over but I am going to voice my concern and i would welcome any insight or direction.
The last 12-13 weeks I have been suffering from hip pain, at 1st it was just a little hitch in my giddy up it wasn't constant pain either. Even now its not horrible pain my hip or pelvic feels weak or unstable like my bone is brittle. i do get pain "flair ups" . I tried to push it off as getting older (I am turning 37) and I am very active thinking i might be just feeling the woes of an over and over used body that’s still out of shape from winning the battle with the red devil.
Well a few weeks ago I took a fall on my mountain bike and broke my pelvic bone (had a cat scan that found two Olvusion factures). The fall wasn’t awful and it was at low speed so when the ER dr said I had broken my pelvic on the same area where I've been experiencing the hip pain for several months it surprised me and concerned me. I’ve taken way bigger and harder falls in the past and never broke anything. I received a call yesterday from my primary Dr saying she has contacted my Oncologist to "consult" on my hip pain.
I am going in for Xrays this week. When I took the bike fall they only did Cats can for softtissue so Mets wouldn’t show up on the scan (is that true?) I've read that X-rays don't always show bone mets either. Guess I am just worried that being I am so young and I didnt have node involvement with my cancer that my Drs. will brush me off. I am also getting shoulder pain too, which just started this week. I am not on any hormone treatment, I opted to not take the drug for the side effects. So the hip discompfort isn't drug related.
Would you mind sharing your experiencewith Mets and your DX? My tumor was 1.9cm, with several smaller clusters (5 to be exact) of other cancer tumors. The largest had vascular involement (not really sure what that means) but no node involvement.
I am worried that the Xrays won’t show the mets and myinsurance won’t pay for a bone scan which i guess is much better at early detection. I am feeling gun shy which I am sure is normal and I don't want to worry that every ache and pain is "mets" but I am feeling really uneasy.
Thank you for your time.
Rain.
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Chrissyb, Thank you so much for your reply. You helped me put all this in context. I wish my sister would get on and talk with all of you. I think she would find great comfort in being with a group that truly understands what she is going through.
thanks again for taking the time to help people with questions
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Can I ask one more thing? My sister was on Afinitor. She told me her blood counts were very low and they will not put her on chemo. They do not know if this was caused by the drug or by the cancer. She has been put on oxycodone.
How long will it take to get her blood count up? Will it recover now that she's off the medicine?
Sorry to ask so many questions. I do not want to press her...but I really want to understand.
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Hi raindeer,
I'm so sorry about your pelvic fracture. That is difficult, cancer or not.
I completely understand your concern about the docs not taking the possibility of mets seriously. You are wise to follow up if they don't with either a bone scan or, if possible, an MRI. You say your insurance won't pay for a bone scan? Is that true even if your oncologist orders it? I didn't think insurance could turn down a diagnostic scan if the doc feels that the previous scans don't do the job and they still have questions. Bone scans are cheaper than MRIs, so that might be something worth pushing for.
CT scans can sometimes show bone mets, but not always. The same with X-Rays. Mine didn't show up on X-Ray so an MRI was requested by the doc- but then they knew I had a problem because I was numb from the chest down at that point. I get CTs at regular intervals for spread from bone, and sometimes the worst bone mets are mentioned on the report, but only in general terms in obvious spots, which is why I say sometimes they show up. Bone scans "light up" the way a PET would in the cancer areas, so they are really useful- and cheaper. Being still Stage I, it is hard to get doctors to to respond as aggressively with scans- I remember that well. I was complaining about pain for over a year before my Stage IV diagnosis, but because it came and went, it wasn't considered serious enough to scan for.
All I can say is keep pushing until YOU are satisfied. Good luck.
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Hi Rain it's always a worry when we start feeling pain that doesn't seem to want to go away for long and especially when we break a bone while doing something that wouldn't normally be a problem.
You asked if a CT can show bone mets and the answer is yes, they can although perhaps not as well as a bone scan or MRI. The use of the ordinary xray can also in conjunction with a CT can give a better idea to your docs if the break is because of the fall or if it is because of something that needs more investigation. I will point out that the tech who read your CT in the ER may not have known your BC history so, because of your age, would not have been looking for mets, just a break.
You say that your own PCP has contacted your onc for consultation on this matter and I would tell you that your doc is on the ball and because this 'consultation' has been requested it's not likely that you will get the brush off even with you being so young. It is unfortunate that for a lot of young women this happens before their initial dx but that is not the case after dx and treatment. I'm sure your onc and doc have told you that any unusual or persistent pain needs to be reported.
I am not a doctor so can't tell you if you do or don't have mets but if you had LVI (vascular involvement) and you are not taking Tamoxifen and even though you completed chemo, it is a possibility.
I say that because I had LVI, no nodes and three large tumors in one breast, only completed one round of chemo and then onc refused to give me more, ended up having an allergic reaction to Tamoxifen after three weeks and was given no other treatment as there was nothing else on offer. I always knew that the cancer would return for me, it was just a matter of when and that when was five and a half years ago when I was dx mets to bone.
Rain I sincerely hope that you are not about to join the stage IV girls but keep in mind that it is a always a possibility.
Love n hugs. Chrissy
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Hi Mollyart, yes, the Afinitor could have caused the low blood counts but that should resolve on it's own in a couple of weeks. Feel free to ask what ever you need, I'm happy to answer you if I can.
Love n hugs. Chrissy
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Chrissy and Sandilee - thank you both for sharing and replying. I called my Oncologist yesterday and my primary Dr also to see what they discussed in their consultation. No return call.... I fought the urge to call again and pester them. I not a push or needy patient so I can't imagine why they are brushing me off. Hope to heck no news is good news and they aren't avoiding me because they want to give me one more weekend before they rock my world. (Sigh)
Woke feeling really good this morning almost no pain and I even rode my MTBike last night on easy side trails, thought huh maybe the pain is gone? Tonight helped a friend move so lots of up and down stairs moving walking. My husband was pretty insistent I take it easy. Saying rain don't over do it. Na na I am all good I feel great! Yay!'
Come home sit relax make my way up stairs to bed. Oopphh feeling stiff in my stupid hip. Ouchie just a little. Lay down start feeling the "ache". Why does it get worse stopping vs with activity or vs vs other days?
Well it's almost 1am and now I can't sleep.
What did your early pain feel like? Are you ladies in bad pain ?
Thank you for your time.
Rain
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ps and now my silly shoulder is hurting me more regularly. It's the oddest pain. Can't really describe it. Bone mets can't possible invade/spread this fast right?
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Rain I know it's not really easy to do but please try not to worry quite so much. Your docs are probably waiting until you have that xray before making any firm decision as to what is going on and are not going to return your calls until they have some sort of answer that they are happy with.
Everyone is different so what mu pain was like may not be the same as your pain but I will say this, it was so deep that I didn't know what to do with myself. My bone mets are necrotic (dead) thanks to rads and the AI's but the pain I have now is more from the surgery and radiation than the mets themselves......oh, and I'm NED and have been for almost four years.
Love n hugs. Chrissy
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A few weeks ago, I found a lump in my left
breast, accompanied by inflamed axillary lymph nodes.As some of you may remember, my mom died
from her b cancer 6 months ago. Well, I got back my results today and – it’s
inflamed tissue! The not so good news – I’m BRCA 1 & 2 + and the doctor
basically told me that with my family history (both mother and grandmother
having it) I am in for a ride. Ah, the grandness of the stress!
Anyhow… this is not the place for my future
problems. But! I thought of all of you, and all the spectacular help you gave
me when my mom was going through her initial dx and subsequent stage 4 transition.
I hope all of you are doing super well! All the best!0 -
Oh, AlyonA, I am so sorry about your BRCA 1 & 2 results. I don't know anything about BRCA mutations, but just wanted to reach out and say that I'm sure both the informational side of this website and the BRCA forum here will be extremely helpful to you. And belated condolences on losing your Mom. I'm so sorry. Sending you a (((HUG))) across the miles... Deanna
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Hi all .... Im a newbie with so many questions. I was diagnosed in 2012 with stage lll ILC. Had a bilateral mastectomy with reconstruction, 30 rounds of radiation and tamoxifen. The radiation did a real job on the reconstruction and I had to have a redo in the summer of 2014 ... I had two surgeries 3 months apart and after each one the CA 27/29 elevated .. the second time it was 49 ... not crazy high but out of range ...onc thought it was from inflammation after surgery but had me do a full body bone scan and an abdominal/pelvic/lung CT .. scan came back showing leisons on my liver ... largest of which is 2 cm ... onc wants to now do a biopsy to confirm mest but my research seems to indicate that biopsy can spread cancer and scans are typically used for diagnosis .... my onc says that biopsy yields critical info regarding receptors and I totally understand this .... scared to do it .... scared not to ...if anyone can share their experience and knowledge with me I would greatly appreciate it ... blessing to you all ..njoy
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Dear NJoy, welcome to the BCO Community. We're sorry you have to be here, but so glad that you've found us.
You may find posting in Team ILC Warriors and/or How are people with liver mets doing? of interest. They may have some feedback about Liver biopsies as a number have had them. Usually, only a biopsy can determine for sure if scans are actually BC
The Mods
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njoy, I'm so sorry about your newest dx. I haven't had a liver biopsy, but I do believe it's a common and necessary procedure -- not only for hormone receptor status, but because not all things that can show up on a scan are necessarily mets -- and you certainly don't want to have chemo if there's any chance those spots are something other than mets! I have a liver hemangioma, for example, that was initially thought to be liver mets. Thank goodness I could provide a scan I'd had 6 years earlier that showed the same, unchanged "spot," so a biopsy wasn't necessary. And it's not uncommon for suspected lung mets to turn out to be benign artifacts from past pneumonia, etc.
My best suggestion would be to get a second opinion -- a good idea prior to any type of surgery, including a biopsy. As far as biopsies spreading bc cells, my breast surgeon @ UCLA assured me that she's never seen a case where that had happened; and although I am extremely alternative-minded about a lot of healthcare issues, when it comes to bc expertise, I would tend to go with UCLA over those who hype the tracking theory.
Hope this helps some. I'm sure Chrissy and others will be along to add additional info' & support. (((Hugs))) Deanna
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Thank you so much....I have been there too and found wonderful people and information...so grateful for this forum!
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Thank you so much for your post Deena... I have been going a bit off the deep end this weekend trying to keep my worry in check and not pass my fears on to my 2 boys . ( 13 & 20 ) to whom I have said nothing. My scans were Friday which is never good in trying to handle things over a weekend... and my onc has not yet seen the films but said the radiologist's report said there were a number of leisons and they were leaning toward mets ... I agree entirely on the second opinion and plan to call my breast surgeon on Monday to see if she can fit me in .... I always feel like there is such an urgency about making these critical decisions and I have to slow myself down so as not to make fear based decisions. I had such a wonderful summer and feel so good after coming through two surgeries in the last 3 months ... just dont understand how you can feel so good and be so sick?! Clearly thats the blessing.... hopefully these leisions are benign and I can move on to other happier things .... I just wonder if the radiologist puts that in the report to cover himself or if what he saw fit certain guidelines indicative of metastatic disease? ... I appreciate your words and felt calmer as I was reading them ... thanks again so much ... blessings to you ...
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I have a question and forgive if I offend anyone by asking, but does cancer hurt? My doctor says that cancer doesn't hurt unless it has mets to the bones. For the past three weeks (after I had my biopsies) I have felt something in my back and it has started to hurt..not extreme pain just a little. am afraid that the cancer has spread. I am going for CT and brain MRI on the 16th of Oct. (my birthday is the 17th), and am terrified of the results. I go the day before my 50th birthday. I have asked my doctor not to call with the reslts until the following Monday. I want to enjoy my birthday weekend as much as I possibly can.0
