If you are not Stage IV but have questions, you may post here
Comments
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Hi Papillon, sure hope this year brings with it some good news for you. That two year limit that is thrown around for BC prognosis is an average and none of us are average. There are many women with multiple mets who live longer that that. As long as your mom is doing well that is all we can ask for and every day is a blessing.
Hoping those blessing keep coming your way.
Love n hugs. Chrissy
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thanks Chrissy. Supportive as always. Wishing you a 2015 quill of smiles xx
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quill should read full...a wriggly 2 year old hijacked me.
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Papillon I'm smiling as I read "wriggly 2 year old" highjaccking you. .......love it! Please give that gorgeous, wriggly 2 year old a big gentle hug from me.
Love n hugs to you as well. Chrissy
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is the pain from mets usually constant?
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Shelley it can depend on where the mets are but any pain that has not eased, changed or gone after a maximum of three weeks should always be checked out properly by your doctor.
Love n hugs. Chrissy
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Hi everyone-
I have a question about pain and how to know if it is muscle or bone pain. My scapula (should blade) has been bothering for a good 2 months. It has become increasingly hard to ignore or downplay and I'm becoming worried. It is on my cancer side but I can't figure out if the pain is in the actual shoulder blade or the muscle. It's an achy pain, but when I stretch my arm it hurts too. It seems to be worse at night and when I lay down the only way that doesn't hurt is if I lay on my back.
I had a CT on my chest right before Christmas that was clear, but I don't know if this would pick up anything going on with my shoulder.
Does anyone have insight on this type of pain? Or does anyone know if the chest scan would also pick up the should blade?
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My CT scan in early December showed an osteolytic lesion on my scapula. I had rotator cuff tendinitis two months earlier, so I was hoping this was some sort of inflammation showing up, but a biopsy just before Christmas proved it to be metastatic breast cancer, and the rotator cuff problem may have been caused by the bone deterioration. So the good news for you is that it probably would have showed up on the CT. Mine also appeared on a bone scan, and I think that is more sensitive.
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I talked to my BS that ordered the chest CT scan and she said...or the nurse actually...that the scan did not pick up my shoulder. That I should get with my PCP about the shoulder issues. That seemed like a total brush off. grrrr
I really don't know which way to go with this now. Why am I so worried about coming off like a hypochondriac to my MO? Should I go to her with this? I'm a little freaked out now.
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I like the rule that if it's been bothering you more that three weeks, get it checked out. There are lots of things that could be causing it, but some sort of scan that covers the area you're worried about should be discussed. Are you sure that the scapula wasn't in the CT scan, even if the shoulder wasn't? Can your doctor show you the actual scan, rather than just the report?
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I can ask about it when I see her on Monday...I see her and my MO the same day. This has been bugging me since late November, maybe longer.
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tangandchris, by reading how others on this forum are their own best advocates, I've learned to be more assertive and not worried about what medical personnel think of me when I ask questions or bring up issues regarding my health. One way I did that was to imagine that I was speaking to them about a loved one and not necessarily myself. This works well over the phone, when I sometimes feel intimidated by a person who sounds like they know so much more than me. If your husband, child or mother were having some problems and they needed you to speak up for them, you certainly would. Well, do the same for yourself, you are well worth it! I also remind myself that the medical personnel are getting paid whether you bring up something that is very majorly important or a minor issue. You are asking for their expertise! Get piece of mind by mentioning any issues you are having.
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You are so right Mrsm! I called my MO's nurse and she is going to see about getting a scan just to keep my mind at ease.
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I know you can't diagnose , but was wondering if any one has any input or have experienced this. I just finished chemo 2 weeks ago. After taxol #6 I got this pain in my right thigh that shoots down the thigh. It's been 8 weeks now and I still have it. I did mention it to my MO a while ago and I told her I thought maybe taxol was causing it. She said it sounded like the sciatica nerve, but I don't know I've had sciatic pain before and I couldn't walk without using pain pills. This isn't like that. When I first get up I feel it or if I sit for long periods of time and then get up it hurts. When I am out walking I don't feel it at all. When I am sitting or lying down I don't feel it. If I am standing in line for something I feel it and it hurts. I see my MO in two weeks so if it hasn't subsided I will tell her we need to check it out. I will say I got steroids on the day of taxol infusion and the next day I didn't feel at all. My mind is not being nice and is thinking it's C.
Thanks for any thoughts
Nancy
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So, I've spent the last half hour or so trying to manually massage my shoulder/back area. Almost impossible really to reach, but I just wanted to see how the pain reacts to it. I'm making myself crazy!!!
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Nancy, what you're describing sounds like it's most likely related to the Taxol. My other thought is, if you had Neulasta or other white blood cell building drug, it could be from that. Just two weeks out of chemo, it's highly unlikely it's anything except a latent or lingering reaction to Taxol or Neulasta. I had a really bad pain my right lower leg for several weeks after TC, and I know others here have reported similar leg pains. At some point if it doesn't improve, you may want to ask for an MRI of that specific area -- just for the reassurance and peace of mind that it's not bc-related, which I honestly don't think it is. (((Hugs))) Deanna
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tang, i have gotten really good at figuring out how to massage my own back, i do things like: find a pole outside, wear a coat and roll back and forth from the spine to the side. this can be done standing at a bus stop too! at home, i find an inside corner in the house, grab a couch or bed pillow, put it behind my back and roll around, up and down, side to side! or a wadded up towel under your back on the bed, or , roll up a towel or two together lengthwise, so its a long roll. put it on the floor or bed or what ever is comfy, and lay down on it and squirm till you hit the spot!
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Thank you Deanna. You made me feel better. I will bring it up with my MO again in two weeks.
Hugs to you too.
Nancy
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tangandchris,
I just noticed that you're in Texas, not that far from Fort Worth where I lived for 31 years and where I was diagnosed. I was having a lot of problems with doctors who downplayed my concerns (see PM), and the best advice I got was from my brother, who told me to "channel your inner New Yorker." There are plenty of ladies on these boards who can describe the proactive, assertive attitude of the true New Yorker, if you don't know any personally.
It really helped me get the treatment I needed. Now that I've moved back to New York, I notice that I don't meet as many doctors with god-complexes. Their patients would set them straight pretty quickly.
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Haha...dh is from Long Island
But I have more attitude than he does in these situations. Go figure! So MO's nurse called and said that MO wants to see me prior to ordering scans. She wants to evaluate my pain and range of motion. It makes sense to me that she wants to do it that way.
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Hi,
I am two and a half years from diagnosis of IDC in left breast, high grade (3), HER2+ (likely, three pathologist and we couldn't get a decisive positive or negative), ER/PR- 1.8 cm in size, Stage 1 cancer. I don't know what the new A or B means in relationship to my stage.
I have a horrible family history, maternal side all women in my Mom's generation had multiple cancers including breast and all died of cancer. A maternal cousin died at age 27 of breast, two other maternal cousins had colon cancers in early 50's, when I was diagnosed with breast. One died, one has survived so far. My Aunt who banked DNA and myself tested positive for an NBN gene mutation. Not a lot is known other than a mutation in this gene is linked to higher rates of breast, colon, prostate and I think blood cancer.
My oncologist wanted me to have a BMX, even though it was Stage 1 because of family history, I wanted the same. I also underwent Taxol/Carboplatin and Herceptin.
I had immediate reconstruction with expanders, very serious post-op infection 10 days later, expander removed - chemo, expander replaced on left, another infection, finally implants in May 2013. Very painful, hard and iron bra feeling. Developed auto-immune disease probably from the extensive antibiotics I was on for a year. Have chronic muscle and joint pain and Hasimoto's disease which is in the thyroid.
I just had DIEP surgery 5 weeks ago to replace my implants that were so painful. Surgery went well but I have had constant problems with severe pain in my chest bone. I had a pre-op chest x-ray but my breathing has felt "off" for the last year, I have a small bump on my wrist, started out last year the size of a pencil tip and now is the size of an eraser.
My mother also was diagnosed with cancer at 50, first was lung (she was an ex-smoker), they found it on an X-ray done as a "test" so she was operable. She then has breast cancer (a separate cancer not a metasticist) at age 53, the same age I was. Had a mastectomy - two years later she had cancer in the other breast - a new cancer again, not a metasticist. Then she had bladder cancer which was treated on and off for years, again a new cancer and finally at age 64 she had a sarcoma which did metastisize and she died at 65.
The protocol now is to not scan for cancer. Wait until you have symptoms lasting more than 3 weeks and then they test accordingly. Lately on the DIEP surgery thread I have had woman after woman find out they developed cancer elsewhere and when I ask how they found it they say from scans. I feel crazy with worry about the pain in my sternum, the breathing, the thing on my wrist that keeps growing. But, whenever I raise these I am told everything is fine, but I don't understand how we know that. And, I understand that metastatic cancer isn't necessarily treated better if it is found early or not, which is why they wait for us to be symptomatic, but with my family history I am worried also about "new" cancers. In my Mom's case she survived as long as she did from all those cancers because they detected them all early.
I also know there is a huge risk of radiation exposure (I did not have to have radiation therapy for my BC) in doing a full body CT scan but a part of me so wants to just once know I am completely free of cancer.
What are your thoughts?
Julieho
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JulieHo - I actually have had several PET/CT scans - even more radiation than a full body CT - but the findings - a) yup it's a recurrence; b) more & different chemo will be needed; and c) all clear; were very empowering or reassuring. My Mo who is retiring did say I might have trouble finding anyone who would order the scans going forward. Did I understand you're in your mid 50's? I might look at it differently because I'm 70. Hope you can determine what's best for you.
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I started a new topic before seeing this, I will ask here too I suppose...does anyone have experience with stage 4 returning to abdomen lymph nodes only (not to organs) without any symptoms?
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Welcome to BCO Cancersux1990. We hope you find this forum to provide some insight into your mother's problem. The ladies here are very knowledgeable and compassionate and a wealth of information and experiences.
You may also find the forum For Family and Caregivers of Members with STAGE IV Diagnosis to be of assistance to yourself as a daughter.
We hope that your mother's condition has not progressed and the swolen lymph nodes are for a more easily dealt with reason. All our best.
The Mods
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Hi Cancersux and welcome. It is possible to have cancer in the nodes of the abdomen without having any symptoms and if this happens, it is usually picked on having a CT scan.
I hope this helps.
Love n hugs. Chrissy
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Yes, thats when they found it...but we are hopefully because the doctor said on a scale of 1-10 of 10 being cancer she said it is a 3...it is common for it to do that? She had deep flap surgery and the scar was infected and took awhile to heal..but that was 6 months ago...I wonder if it could still be infected. They are not even doing a biopsy till next tuesday! Which torture..
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Cancersux, the problem with breast cancer is it can pop up anywhere but it's not that common for it to be in the abdominal nodes without being somewhere else. I understand that it seems a long time between now and Tuesday but in the scheme of things it really is only a blink of an eye and won't make any difference to the out come even if it is cancer.
It is possible that there is some lingering infection still and my guess would be that is why the doc has said that the possibility of cancer is only a three. Try to stay busy for now and also try not to let your imagination take you places it, for the moment, needn't go.
Love n hugs. Chrissy
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Thanks for your help! She feels completely normal and very energetic so we will just wait and see...I'll post once we know.
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Yes please Cancersux, I would love to hear how she gets on. Keeping my fingers crossed for her.
Love n hugs. Chrissy
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Thank you we are hoping for best!
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