If you are not Stage IV but have questions, you may post here
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Linda: My stats are similar to yours, if PR 5%+ makes me PR-. Not as many nodes, but I wonder if the PR- affects our outcome. I've read where it is a more aggressive cancer when it is PR-. Even though both you and I are Grade 2, I wonder if the PR status has something to do with it growing faster.
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lanagraves, may be the PR thing. My first biopsy had it at a grade 3, but when they did the lumpectomy it was considered grade 2. I sometimes wonder about all those tests and know that there are wide ranges and a lot of variability that occurs with repeated testing and sampling.
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Hi everyone, just wanted to share my scaniety with others. I am on the "gray"area of IIIC or IV. God really, someone give me a diagnosis. I am having a 3 month PET scan followup tomorrow. I have been having my heaviness around the sternum area. It is just uncomfortable, slight pain but really not a big deal. It has been there for a couple three weeks now so we decided to scan.
On my June 1 PET I had multiple axilla nodes,multiple sub-pectoral soft tissue nodules and extends into the skeletal muscle, and numerous mediastinal nodes. All say clustered. Oh and supra-clavicle clustered too.
So if treatment is not working, would the enlarged lymphnodes in the mediastium cause discomfort? The NP was telling me in June that having that extensive disease in the medastinal nodes is rare to not see it spread to lung or liver. So I am expecting something to have spread. Trying not to be doom and gloom.
I hate this low carb diet. I want to eat the house about now. Going to take some xanax to clam my nerves for sleep.
I dont like to post on the IV because I do not have mets to an organ, I just feel kind of lost and wanted to share with my fellow sisters!
Thanks for listening.
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my onc told me that being PR-/ER- gives you less treatment options as to being + you can do hormonals. Then being HER+ is agressive, faster growing cancer but has its own treatment options. He said triple negative being worst, then ER/PR- HER2+ then triple positive being best since you have the most treatment options. I have seen plenty of women be ER/PR+ and do not respond to treatment as well and vice versa. So you just never know.
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Allison your onc us right about all the treatments options and the way he broke it down is perfect. (((((((hugs)))))))) to you. The definition of stage IV is anywhere outside the breast area so for me I would say you are welcome to post in the stage IV area even though you have no organ or bone involvement. Here's hoping those mets are still just in those nodes.
Day I don't have mets to my leg bones but it is common for them to appear in the femur (thigh) but not usually below the knee. Yes, they can also appear in any of the nodes in the body. Here's hoping that's not the case with you.
Love n hugs. Chrissy0 -
thanks chrissy, i have been pacing the floor waiting for my appt today. I hate scaniety!
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Alllison - good luck today - hoping that you get good news!
Day - hope you can get some answers soon to what's going on. It is so frustrating at times to try to get an answer in a timely manner.
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Day: Sorry to chime in here on the Stage IV board, but I noticed you are hormone receptor positive. Are you taking Tamox or an AI? The reason I ask is that one of the side effects can be blood clots. Have they checked you out well for a clot? Not trying to scare you but it might be someone to check on just to be sure.
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Sorry - missed that part of your post somehow.
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Day - still sounds like it could be a ruptured Bakers cyst. Usually they are diagnosed by physical exam alone, as the rheumatologist did. And you don't need to have arthritis to get a Bakers cyst. Once ruptured, I suspect it would be unlikely to show up on ultrasound. How does this description sound:
"With cyst rupture, severe pain simulates thrombosis or muscle rupture, with warmth, tenderness, and erythema of the calf. A ruptured cyst can also produce ecchymoses, which may involve the posterior calf from the popliteal fossa down to the ankle [16]. An ecchymotic area below the medial malleolus, termed the “crescent sign,” may be present. In some cases, the rupture can extend upward into the thigh or down the anterior lateral aspect of the leg"
Hope your other tests are OK, and that your leg is slowly improving.0 -
Day~as soon as you said, "swelling behind your knee," I thought of Baker's Cyst! I'd never heard of it until my younger sister had it several years ago, then I started hearing about it quite a bit. I know they can be quite painful.
I pray you get some relief really soon, and a good report about all of this.
Blessings
Paula0 -
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Thanks to everyone who answered about my aunt ages ago. I just saw her last week, and this week she had her first scan after finishing chemo 6 months ago. She is NED! Yes!
2 years ago, she was DXed with 3 separate primary cancers: lung, breast and uterus. She had 3 surgeries, radiation and chemo. She recovered amazingly quickly considering the severity of DX and the fact that she is past 70. In the spring they found mets in the abdominal cavity and on the liver. She had chemo again, 6X taxotere and is now NED and turning 75 in a month.
I just wanted to report back and say thanks.0 -
Momine that is wonderful news! Thanks for letting us know how well she has done.
Love n hugs. Chrissy0 -
I don't normally post on the stage 4 boards but wanted to pass along some info regarding Blondie....aka Sandy. I ws not sure where to post this so I thought I would start here. Please share with your friends.
I got a FB message from her daughter telling me Sandy was in the hospital with pneumonia. She is getting better and will be coming home soon. Her daughter is touched by all the people that have posted regarding Sandy. She is thankful for our thoughts and prayers.
I'm so happy to her my friend will be coming home soon!
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Resection of liver? How is the liver now? Was it your oncologist idea to do resection? That's a great thing.
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Hi, journey4life.
Your diagnosis and mine are similar - the same stage, grade, and number of nodes (see below). (In fact, my name is Lisa, too, but back on topic now...) I had scans, and I'm sharing with you what my onc did:
My onc is considered a "top doc," and she is very up-to-date on the latest. She ordered a PET scan for me at the very beginning, after surgery but before chemo. Then, after chemo and radiation, she ordered one CT scan. But she said she will not be ordering any more scans for me from now on "unless something comes up." However, she still sends me for blood tests (CBC and Vit D) at my 6-month visits.
I was diagnosed a year before you were. So, maybe the advice on scans changed within a period of a year...? I don't know. But, since our diagnoses are similar, I thought I'd share what my onc does. Other oncologists might not do the same thing.
P.S. (The year I was fighting cancer, I had multiple CT scans for another benign condition. In fact, the PET scan caught the benign condition. But only the PET scan and the last CT scan were ordered for the breast cancer itself.)
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Hi, I have finished all my treatment and when I had the three month check up I asked how they checked on me.
They don't do bloods and I will see BS and Onc every three months for first year and mammo every six months.
My problem is I have very bad lower back pain which is painfull, am I worrying or should I be concerned.
My next meeting is in a month with my Onc do I wait till then?0 -
Hi Ali, lower back pain is quite common as there are many things that can cause it not just mets. I understand your concern and it is worth mentioning it to your Onc just so he/she is aware of it but the few weeks until your appointment shouldn't be a problem.
Love n hugs. Chrissy0 -
Thanks, I didn't want to say anything now they may think I'm mad.
I think after the rads my back has got worse but I don't want to keep taking pain killers.0 -
Ali I hear you on not wanting to take painkillers but they are there to be used in order that you can be pain free and functional. It's also quite important that you always mention any unusual or new area of pain or discomfort to your docs so it can be recorded and watched.
Love n hugs. Chrissy0 -
Momine - Thanks for the update. Sounds like she's doing great, and it's so good to hear stories like that.
My xrays came back clean (of course the next day, my bad knee gave out when I was walking down some stairs, so I gave my back a real reason to ache...). Thanks for the support and listening. I want to think positively, but it's hard sometimes.
My physical therapist has a saying that he passed on to help keep me positive: If you hear hoofbeats behind you, you probably don't think 'zebra.' I agree with that for the most part, but I think for many of us, the problem is that when you're wandering about a safari zoo, zebras aren't out of the question...
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Hello everyone...I am waiting to see my surgeon on Wednesday to look at a suspicious though very small lump(s?) in my neck on the BC side. Just had my neo chemo this spring, bilateral mastectomy in June and was given the all clear and the bastards refused to do rads on me since my tumors had shrunk under .9cm and .5 with clear margins. I'm hoping this hasn't come back to haunt me this fast and it's just some junk from the surgery (did have drains pulled in just 4 days) and my onc didn't even feel it until I had to show him where. I thought with 95 ER positive that Tamoxifin would buy me years and years of time if not permanent...they said 15% recurrence rate with the Tamoxifin. It never rains when it's 15 or 20% here. sigh. 3 months. 3 glorious months when I thought I'd outrun this (literally, I'm running 3x a week and have great energy). Just sharing my sob story and fears. Praying this is not supraclavical node spread. This soon? Anyone else with false alarms like this??? thanks....
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Hi 7of9 yes I hear what you are saying and believe me we all have had thoughts just like yours. Quite often our nodes are reactive and normally we would take no notice but of course because of the BC our thoughts go straight to mets.
I had a node just like that that my doc was really concerned about and ordered a CT because of it. It came back clean so it was just a reactive node.
Hoping yours is just the same. Good luck!
Love n hugs. Chrissy0 -
Thank you so much for words of encouragement Chrissy. Last time I was doing this was in January and I was trying to remind myself that MOST breast lumps are benign and my mother has very cystic breasts anyhow. The loss of confidence in our bodies is such a shame though reality I guess. I remember reading some old comic saying how sad that "youth is wasted on the young". Oh to be oblivious and a (dumb) teenager again...then again, here in adulthood is where the real blessings are. Husbands, children, nieces, etc. It's a place of appreciation and sadness as things with our bodies try to take them away. Not without a fight...
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Hi 7of9 - just want to send you some ((hugs)) and positive vibes. Hoping that the lump you feel is nothing to worry about. Keep us posted.
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7of9,
The statistics are really on your side. But, I totally "get" your feelings on the loss of confidence in your body.
Here's how most of us play it: if we get a twinge, pain or ache, we watch and wait for two weeks. If the abnormality persists beyond two weeks, get your fanny to the Doc's. This works for minor stuff. If you have any heart or lung symptoms (shortness of breath, heavy pressure on chest feeling, etc.), don't waste any time getting to a medical professional.
In this phase of our lives, we are duty-bound to get medical attention whenever we feel we might need it. No brave pioneer woman stuff here, ok?
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7of9- where is the lump in your neck located? I underwent BMX with TE reconstruction, chemo, and radiation this year. About 3 weeks into radiation a large lump popped up on my neck (left side, under my ear about an inch). Well, my Drs absolutely freaked. Because it was on the opposite side from my BC and I had no positive nodes, no LVI, they were pretty confident that it didn't have anything to do with BC. However, lymphoma was a concern.
I underwent two ultrasounds, and 3 CT scans in the past few months to monitor it. Everything looked good, glad I got those scans because I probably wouldn't otherwise being stage II.
All radiologist reports indicated that it was a left cleft brachial cyst, which is a congenital birth defect. When were forming in utero, we have "gills" on both sides of our neck that should seal and close up. Mine did not.
After keeping an eye on it for several months (sometimes they go down on their own) my RO and MO decided to send me to an ENT surgeon. I'm thankful they did. He being more of an expert could see that it was wrapped around my jugular and needed to be removed ASAP.
I had that surgery on Friday. The mass on imaging was about 3 cm. When he removed it, it was larger than a golf ball, and fluid filled. It was benign. Very scary. Maybe you could ask for a referral to an ENT surgeon?
Btw, the consensus from all Drs was that the stress of surgery, chemo and radiation caused it to react at this time.0
