If you are not Stage IV but have questions, you may post here
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Thank you RIdley and Glenny, I have Kaiser and am on Medicare, so I'm stuck with them until October. I plan to ask for the testing you both mention, but I'm wondering why I'm scheduled to meet with the surgeon already. I think we need to know what we're dealing with before we even know what kind of surgery may be necessary. What happens to people who don't research, ask questions and speak up?
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Hi Sarah, sorry you're having such a hard time. I think most of us are referred to a breast surgeon first, but that doesn't mean they will operate right away. When I first met with my surgeon, he ordered a mammogram, ultrasound and MRI. At first based on clinical examination they thought it was small and localized. But the scans showed it was extensive and had gone to the lymph nodes. So the surgeon ordered more biopsies, and when those came back positive they ordered a full body PET/CT scan to find out if it had spread anywhere else (thankfully it hadn't). After all the tests were back the surgeon and medical oncologist consulted and both recommended chemo first. A good breast surgeon WILL want to know exactly what they're dealing with before making a recommendation for timing and type of surgery. Sounds like you need a new oncologist too.
Be sure to tell the surgeon all the history you posted because they should take that into account when they order the tests. Because I am very young for breast cancer, the surgeon also referred me for genetic testing, and given the factors you mention, would recommend that. Good luck tomorrow!
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I have a question if anyone can answer it for me I'd be grateful. I found a small lump at the top of my chest, just below the hollow of my neck. It's firm but move-able and it feels like it's directly under the skin. The lump isn't visible just palpable. A few days after finding the lump I happened to have a regular check up with my MO and mentioned it to her. She felt it, said something about it being too small at this point for a PET to pick up and told me to watch it and let her know if it changed in size/shape. She said if it got bigger she'd refer me to a surgeon to have it removed to see what it is. She also mentioned something about it might be caused by something autoimmune and said the name of it but I promptly forgot what she said. I already have a couple of autoimmune conditions and they tend to piggy back on each other. Anyway, the lump hasn't gotten any bigger in the 6 weeks since then but a few new lumps around it have showed up. Has anyone had experience with lumps in this area of the body being cancer? I really really don't want to call MO and deal with having a surgeon remove them if they are benign. My feeling (like that actually means anything, ha!) is that they are nothing cancer related.
Thank you if you waded through my lengthy question!
Kendra
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I would have my MO check it again. We need to report any unexplained changes to our MO. Better being seen than assuming it's nothing and it be something. Good luck.
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kcat - I agree with Artista - get it checked by your MO.
It's my understanding that a PET/CT will show all the "hot spots" (possible cancer growth) in your body so I think she's wrong about that test. It may not pinpoint it enough for a surgeon, but would show cellular activity.
I don't want to frighten you, but that's just where I discovered my recurrence. Doc wanted to do an MRI when I showed him the lump but I insisted on immediate Ultrasound & that triggered an Ultrasound biopsy and diagnosis of recurrence two years after BMX. Recurrence was in the lymph nodes even though prior surgery SNB showed clear.
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Artista and Minustwo thanks for responding. Minus, you found a lump in that same place that was a recurrence? Ugg. I was under the impression that being that high up on the center of my chest and not in the area of any lymph nodes that I wouldn't have to worry about a lump there. Would you call MO back or should I call my surgical oncologist? My SO was seeing me every 6 months for a check up and ultrasound. I saw her in November and everything looked good and she gave me the all clear to start seeing her only once a year now. The SO actually does the ultrasound at my appointments, not a tech, so I wonder if she would be better to call about this than MO?
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I'd call the one you feel the most comfortable with about getting support & answers. I used to call my GYN for everything before she retired because she would jump on things & cared about me as a person.
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kcat - BCO has a "breaking news & research" thread and one of the new postings is about using a particular PET/CT for diagnosis in recurrence. Link is below.
http://www.breastcancer.org/research-news/certain-...
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Minustwo thanks for linking that article, if I end up needing a PET down the road I will ask about which one the imaging facility uses. I called my SO today, I knew I could probably get into her quicker, and I have an appointment for Tuesday. Now to just forget about that appointment between now and then ! I wasn't worried until I made the appointment but now I am.
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I have a question for you ladies. My story is quite complicated, but I will try my best to summarize and you can ask questions if needed. Was diagnosed last August when I was 7 weeks pregnant. I ended up losing the baby at 13 weeks unrelated to the cancer. At that time I had already had a mastectomy which showed I was at least stage IIIc. When I lost the baby I was 2 days away from my first chemo. The only scans I had were a chest xray (clear) and a liver ultrasound which showed 2 spots that they thought were consistent with hemangiomas, but weren't sure. I was a devasted mess after losing the baby and with my mo decided not do any further scans until after chemo. I fished chemo in March, went on a 3 week trip and came.back to a herceptin only infusion and a bone and CT scan. The next day, My MO'S NP called and said my scans looked good. She said that my liver spot did not change in size so that is good and meant it was a most likely a hemangioma . At the time, I figured she meant both spots and didn't question it. But when the CT scan results came on the patient portal, I saw that it only mentions one spot. My MO and her NP were out for this past week. Another NP messaged me just saying she forwarded my message on to my NP and she would get back to me this coming Monday. I would be really surprised if they missed this, but I cannot find or think of any other reason the second spot would not have shown on my CT. Any thoughts?
I also had a small spot show up on my hip, but it did not show in the bone scan so they aren't worried about it.
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Hi, I just had abdominal ultrasound done and full blood work at my family physicians office (local imaging services), and liver ultrasound indicated, in addition to previously existing 2 cysts, 2 additional areas looking "like hemangioma OR foci of metastatic decease"; however local radiologist could only compare it to the written ct report from 2014, where those areas were not mentioned... (He didn't see images from my previous CTs, done by mycancer centre); my liver size is normal, enzymes in perfect range, basically blood work is excellent, other than slightly increased cholesterol; I forwarded this report to my onc , be he is away and I'm worried... Is it possible to have liver Mets and all liver enzymes and other blood work perfectly normal? Are they able to tell without doing biopsy?
I'm scheduled to have an exchange surgery on June 8th, but now I don't know if I should go ahead with it or what?
Any help and suggestions will be greatly appreciated💙
Maggs
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homeschool4us, first, I'm so sorry about your miscarriage. That must have been such a difficult time for you. As far as your question, I think you're just going to have to wait until you can talk to your onc, and until she possibly talks to the radiologist. It would be fruitless to try to theorize what might have happened. The important thing is that nothing concerning showed up on the most recent scan. But you are wise to question the possibly discrepancy between the current and earlier imaging. Too many times these overlooked details come back to bite people, not to mention the unresolved fear when you don't have definitive answers.
Maggs, comparing different imaging modalities is difficult at best, and rarely accurate. You really need to compare a CT to a CT, etc., But that said, could you at least get ahold of the previous CT images for them to review next to your current images? I agree with you, if something was going on in your liver, I think something would be out of whack with your liver numbers, as well as your CA27-29. How long will your onc be away? Isn't anyone covering for him in his absence? I doubt very much that this would interfere with your scheduled exchange surgery, but if your onc has any concerns about what was seen on the u/s, then you need the peace of mind of having additional imaging, such as another CT, just to be sure. As with homeschool4us' situation, sometimes oncs are so busy these things can slip by them, so it's good that you are on top of it. But try not to worry until you can get his input, which hopefully will be reassuring.
Hugs to you both, and please keep us posted here on your what you find out. Deanna
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Hi everyone I need a boost.
I really am not sure. Why no one has stated my stage to me. I'm afraid to ask.
Most of my hx is below. Except my reccurrence this year.
I finished Rads for the skin mets recurrence in 2015.
It occurred after finishing TCH I had 2 more doses of herceptin and it was back in my skin locally. Reason for Rads.
So it would have been a year but I didn't make it. Rads did a awesome job locally.
Feb I received a call, tumor markers are up and pet showed nodes on the opposite side axilla and pectoral area. I also discovered a skin nodule which I had for a while 6mos. Tiny thought to be a cyst. No testing for this.
Anyways my pet and scans are good except this.
Everyone is pushing ibrance and latzrole. I am hoping to cure them this way. I'm not sure if I am curable. Worried sick.
I wanted surgery but was talked out of it .
3 nodes axilla and some in pect. One deep axilla.
I guess because it's in my skin. Well Im basically @#%@ out of luck.Im looking at trials also.
I'm so afraid I will make the wrong choice or be too trusting. My original dx 4% chance of it coming back.
Sorry to whine. I'm just seeking courage and direction.
I've been posting like mad lol. Sorry for sounding like a broken record. I will be better after I get the treatment I need.
Quick chime in on the liver. Also get Mri.
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Maggs, my liver enzymes were normal even though I had extensive liver mets. But my CA 27-29 tumor markercame back very high.
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Shetland Pony, thank you for your reply. Did you have any symptoms? I don't have any pains or aches, other than being constantly tired... I'm waiting to hear back from cancer dr, he suppose to be back yesterday... Did they biopsy your liver before starting tx? I apologize for all these questions but I'm trying to somehow plan ahead ... What needs to be done... I'm scheduled for exchange surgery on June 8th, but if there is problem with my liver - I don't know if it should be done?
My onc doesn't support tumor markers, my colon surgeon does CEA only, so not much to go on.
Waiting sucks...
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I saw my doctor today and she looked at the lumps on my chest and did a quick ultrasound. She felt that she wasn't getting good enough images on her machine and wanted a radiologist to look at the lumps on a more sensitive machine. So I have an appointment tomorrow for an ultrasound at the breast imaging center. Thanks for encouraging me to get these looked at, I'm still not too worried about them but it will be nice to know for sure if they aren't anything concerning!
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I'm heading to Toronto today to have CT of my liver... I'm grateful for my dr being so quick in arranging it...
Praying for good results!
Magg
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Good luck Kcat and Magg! Keeping everything crossed that you both get good results.
Love n hugs to you both. Chrissy
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Thanks chrissy. The radiologist said the lumps seem to have the characteristics of lipomas (yay for benign fat) but that he also compared the imaging from these lumps to the imaging from my tumor (thankful I had the imaging done at the same place!) and they look very similar. So he recommended a biopsy. I've got that scheduled for next week. So now I get to wait longer for answers!
Maggs I hope your CT went smoothly and you get your results quickly.
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Kcat, I know it's a pain to have to wait longer for a difinitive answer but a biopsy will give you that. Take a deep breath and try to relax a little and hang onto the lipoma idea.
Love n hugs. Chrissy
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thanks Kcat and Chrissy! I had ct scan yesterday afternoon. Now is the WAITING... which is never fun... My CT was "urgent" so I hope that the results will be quicker as well.
Kcat biopsy will definitely tell whether there is a reason to worry, I will be praying that those lumps are just lipomas.
Hugs,
Magg
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Keeping my fingers crossed Maggs!
Love n hugs. Chrissy
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Ladies - this question may have been answered in the previous 113 pages, but I probably missed it. And if this is the wrong forum, I apologize in advance!
My question is this: What response would you be most comfortable with hearing from someone you just disclosed your Stage IV status to?
I realize everyone is different... and situations are different....
The reason I am asking is that my husband spent every Friday for a month in the Chemo Infusion room at our local hospital receiving Rituxan infusions. We met many cancer patients and their families. One day it was taking forever to be called back... the computer was down in the Pharmacy. I went over and began chatting with a very elderly lady and her daughter. The mom disclosed to me that she'd had BC years ago and thought it was all over, til last year they found mets everywhere.
I just said something like "Oh, I'm sorry to hear that. So now you're on a maintenance program for chemo?" And she replied that yes, and told me her drugs and rounds schedule. (I'd already said earlier that I had BC but no chemo or rads.) I told her she looked very pretty that day, and how was she feeling these days? She said she felt fine, and that her daughter was taking her out to lunch afterwards. I spoke to the daughter for a while about the long wait, and then we were all called back to the room.
It hurts my heart to hear of sisters receiving that Stage IV dx, but stuff happens. It could happen to me; I know there are no guarantees. But in the meantime, all I can do is love and support those I know.
So back to my original question.... from your point of view, what would be an ideal answer from a friend? From a stranger?
(We've all seen examples of what NOT to say!)
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Blessings, I think you responded beautifully. You allowed her to share, and you were neither overly sad nor falsely positive. My personal choice has been to tell very few people. I guess I would appreciate a similar response. Acknowledgement, as in, "I'm so sorry to hear that. It must be scary. How are you feeling?" Then something hopeful like, "I will hope that new and better treatments come along for you". Then maybe something normal like non-cancer conversation or a plan to do something fun together, as long as it wasn't said in a way to make me feel the topic was forbidden.
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Hi Maggs. Sorry, I just got back to this thread. I would certainly want to know before going ahead with surgery. When will you get CT results? Waiting is the worst.
Hopefully it is not mets and you won't need this info. But to answer your questions, if the CT is suspicious or positive, maybe you can get tumor markers and/or a PET scan for a baseline to monitor treatment. (A PET-CT shows both the activity and the shapes of cancer, but it is not available everywhere.) A biopsy is usually recommended if it can be done safely, to determine if the ER, PR and Her2 have changed, but in my case I had a breast met at the same time so they biopsied that. You also asked about symptoms. I did have extra tiredness, and transient pains and reflux that I didn't recognize as liver symptoms. But wow, the pressure from the ultrasound really hurt.
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Shetland Pony, thank you so much for your response. From all the symptoms you described, extra fatigue is the one bothering me for few months now... But everyone tells me that it's caused by long winter, lack of exercise (which is true...this winter I became such a couch potato... my favourite place is my bed lol); fatigue and my great friends passing from cancer is what triggered my visit to the dr in the first place.
As for results... I was able to find out from dr assistant that they got them right next day (yesterday) and that dr was to call me, but he hasn't yet...I'm hoping today he will tell me...
Maggs
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Blessings, I think you had such a wonderful response to the elderly lady's news that she had mbc. I especially like how you asked her how she was currently feeling. And you didn't just change the subject to the weather or something. You asked about treatment. You acknowledged the difficulty of the diagnosis and didn't tell her to "stay positive".And I can tell you truly listened.
You really had a lovely response to this woman, and in addition, since you asked, here are a few more suggestions. I read a book several years ago that gave a list of several questions that were a way to acknowledge a person's traumatic event. It had an acronym but I forget it. You can ask, what happened? (how did you learned of the progression?) This gives the person the chance to tell their story. Another question that can be asked is, what's been the hardest part for you of dealing with this? And ask them what helps them get through it? People will mention ther faith, family, doctors.
I also like to ask a person if they'd mind if I gave them a gentle hug. The human touch can be so healing to a person's emotional state and is especially beneficial after trauma.
It's important that you didn't overreact when she told you. It was always hard on me when people got overemotional because it made it worse for me. It'salways helpful to be calm but compassionate .
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ShetlandPony – Thank you…. I think that’s what I was
aiming for: “neither overly sad nor falsely positive”… I think that would be the response I would be
most comfortable with if the situations were reversed.Thanks, DivineMrsM – I never ask a question unless I
truly want to hear the answer. (I am a retired counselor…) My husband jokes
that I have a “TALK TO ME” sign tattooed on my forehead. I can get a person’s
whole life story in just a few minutes standing in line, or waiting in a crowded
room. Every person has a story worth telling.I love your suggestions, as well as the book you
mentioned. As for the hugging part, DH was there to get his immune system destroyed
(Rituxan) and we both wore surgical masks, so that really wasn’t an option. (And
once we got back to the room, everyone got hooked up pretty quickly.) However,
on our last day there, I went over to her chair and held her free hand and
called her by name (amazing, even with my brain fog – I remembered her name and
her daughter’s name!) I told her how lovely it was chatting with her, and that
we would keep her in our prayers for continued good outcomes during her
scans. (She was wearing a cross, and had discussed her good
results in recent scans, or I wouldn’t have brought that up.)Sometimes people just don’t want to discuss personal
issues in a public place, but in the Oncology Waiting Room, chances are, people
are there for very similar reasons. I once sat next to one woman who was very
stoic for the first five minutes, and we kept the topic very light… weather,
etc. Slowly she opened up about her Stage IV dx and treatment. All I did was
make eye contact, and let her know I heard her every word. Sometimes that’s all
you can really do.Thank you, ladies, for reassuring me that I didn’t delve
into areas that were none of my business.
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Hi, Just wondering if anyone has/had some weird symptoms that I have. Apart from head pressure which I started getting last July (and has just gone from occasionally to virtually all the time) I have lots of ache and pains (don't we all!!!!!!!!!!!). My main concern is that now I walk funny! I am a very fit person who walks every day (at least 3 kilometres with my DH). I did it all through chemo, radio and surgery. My DH and I used to pace at the same rate but now I take very short steps and scuff my feet as I seem to have become flat footed. On a walk I often walk/shuffle all over the place like a drunk. My legs and feet are okay, it seems like a motor problem. I have had a couple of spells in hospital and lots of scans and tests. At this moment they still dont know what is causing it. I had a CT done last week of my adrenal glands and this coming week I am having an MRI of head and neck blood vessels. I would really like to know what Is the problem and I would very much appreciate any input? Thanking you in anticipation. Best wishes Muriel
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Hi Muriel, I have and do very similar things that you describe and have been told that it is a se of Femara.........perhaps it is your Tamoxifen causing what you do and feel.
Hopefully all your tests and scans will be clear, good luck!
Love n hugs. Chrissy
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