If you are not Stage IV but have questions, you may post here
Comments
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Good12....I agree with pajim, as someone with bone mets. It seems the treatment your grandmother was on didn't suit her but there are many treatment options and we Stage IV patients are not terminal until we've gone through all of them. She has a long way to go. She will naturally be feeling very weak and ill right now with such a low blood count but there is quality of life once we're put on the right treatment and looked after properly. I'm the same age as your grandmother and, now that I'm on the correct treatment for me, which happens to be Ibrance and Femara, I'm feeling very well and strong. My time will come but meanwhile I'm living every happy moment as they come and making sure I keep my spirits up. Once the blood transfusion kicks in your grandmother will feel much better. Your job is to keep her looking forward to small goals and to keep her spirits up. Share little pleasures and jokes. Take her mind off it but if she wants to talk, let her talk freely without using platitudes towards her. Just listen and let her know you understand her fears. But don't let her give in. There are so many treatment options that she will be with you for a long time once the correct one for her is found.
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I am newly diagnosed IIIA this February and am in chemo. I was experiencing back pain, so I had a bone scan. It turned up minimal uptake in the 6th rib. My oncologist is calling it a strain and I will have a repeat bone scan in 2 months. I looked up rib strain and I have not had any of the causes or associated pain. I am wondering if this is what early mets to ribs can look like. My PET scan and CT scan were clear in February.Thank you.
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Hi Magnoliamon, it's very unlikely that you would have developed mets since February particularly since you are still in active systemic treatment. Even though you may not have done anything to cause a strain it's not an unusual occurrence during treatment.
Try not to let your mind take you to dark places right now as you need all your strength to get you through treatment. Your onc is doing the right thing for you in suggesting another scan in two months.
Love n hugs. Chrissy
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Thank you Chrissy. Your response is reassuring. This is my first bone scan and I’m feeling a little frustrated learning that bone scans can pick up mets not seen on the other scans. And I can’t help but wonder if this is something that was here all along. It is hopeful to hear that strains can happen during treatment. I appreciate you reaching out. Love and hugs to you too
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I had a pelvis xray and just had an abdominal CT scan. I should have results EOW. I'm feeling hopefully since its been less painful this week.
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Hi everyone, it is so nice to have the support of the people here. I finally had CT scan, got results today. A small bit of fluid causing some pleurisy and some thickening of chest wall, inflammation from radiation. That's it, no mets the only answer to the pain is irritation from radiation. I am relieved of course but wish pain would go away.
Thanks for the support and words of encouragement.
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Whew! I am sooo excited for you. The oncs don't say that rads can cause rib pain. How's your bloating? I go for a CT scan on Monday. I hope I have good results as well. I'm glad you have an answer!
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Hello everyone,
Recently about 2 weeks ago I started having discomfort around my waist line, it's kinda go down to lower back above the butts both sides and circle to the groin area. It's more bothering when I sit working but I am able to walk fine. I do stretch everyday. Went to see gynecologist and she ordered pelvic ultrasound. Then I saw PCP for a cold inflection, and she ordered lumbar X Ray. Another thing the discomfort kinda go down to my legs below the buttocks Tuesday but they come and go. Could any of this sounds like bone Mets? What does bone Mets symptoms feels like? Thank you everyone.
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Houston- Have you received results from the Xray yet? I would recommend making an appointment with your oncologist just to be sure it is not mets. Bone met pain is different for everyone, but anything that persists for more than 2 weeks should probably be checked. Your symptoms sound a bit like sciatica, which happens when the sciatic nerve is compressed. it may be that your oncologist orders further imaging studies and some blood work. All the best to you, MJH
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Houston, I agree with MJH. Sounds a lot like sciatica, but another possibility that crossed my mind is a kidney stone, or even some intense constipation going on. As MHJ said, bone mets pain can be a bit different for each of us, depending on extent and if nerves are involved, etc. But people with bone mets pain often describe it as intense aching or burning vs. what you've described. Also, in many cases, it's exacerbated by activity -- not the reverse. If you pain is coming from the sciatic nerve, see if putting pressure on the area where that nerve is located (I'll give you a diagram) helps you locate the source of and possibly relieves the pain some. But the pattern you're describing often emanates from that nerve when it's been pinched or hurt. Keep us posted on what you find out!
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Houston I think the others are right. I have bone mets and the pain is nothing like the pain you describe. The pain that I experienced when it first started was a very sharp, continuous pain exactly where the tumours showed up to be when I had a scan. I've seen others describe theirs the same as mine. I wouldn't like to say yours is not bone mets because of the position but it does sound more like a nerve compression type pain. I'm reluctant to even say that because I'm only guessing and you should get it checked it out simply because you've had it for two weeks and it sounds as if you're in quite a lot of pain.
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Are you aware of anyone who started out with Lobular Carcinoma in Situ (LCIS) or Atypical Neoplasia and eventually ended up at Stage IV Breast Cancer? Thank you.
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Lea, there is also something odd about that story with the surgeon wanting a wider excision and radiation after the excisional biopsy but patientnot doing it. It sounds like to me there was more on the path report than just LCIS, because that wouldn't have been suggested for only LCIS.
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Thank you MelissaDallas and Icietla for your responses to the question, "Are you aware of anyone who started out with Lobular Carcinoma in Situ (LCIS) or Atypical Neoplasia and eventually ended up at Stage IV Breast Cancer?"
The link included this unfortunate account and this poster was "last seen" 2 years ago.
In 2008 I had a benign lump removed and LCIS discovered. The original surgeon was adamant that I have more tissue removed and possibly radiation, but everything I read said take Tamoxifen watch and wait. No history of cancer in my family, me very vibrant and healthy. I followed the advice of my oncologist.
After almost 5 years on Tamoxifin I had a lump rise and then disappear on that same breast. All mammo and sonograms were clear, but after a few months I noticed a slight thickening of the tissue. Biopsy showed Invasive Lobular Carcinoma. Because I'm poor and on Medicaid I was only allowed one CT scan. My new surgeon looked at the bones because that's the most likely place for spread. All clear.
Early in 2013 I underwent a double mastectomy, which was not difficult at all for me. My breast tumor was just over 2cm so I was stage II. Before chemo I enrolled in a clinical trial and they paid for an abdominal and chest CT. Wham. Two liver tumors, each over 3cm. Stage IV, quick as that.
Here's what I did not know: Lobular cancer is very difficult to detect. Mine never showed up on my scans. Even CT scans don't always show it. My clear bone scan was later updated with 4 spots of calcification after months of chemo, showing that I had small bone metastesis that had been destroyed. The surgeon said my liver tumors had been there at least two years.
So watch and wait isn't what I thought it was.
If I had a time machine I would listen to the original, old fashioned hick surgeon, and have a bilateral mastectomy right after LCIS diagnosis. It's too late for me, but I hope my story will help inform the decision of someone who is early stage. Then you can live your life, instead of fighting for it, like me.
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MelissaDallas -- I think you may be on to something there. Good catch.
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are there current stats on people who were dcis in their 70s who had lumpectomy and rads and on an AI who still met?
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Lea7777 I guess in a way I fit into that group you mentioned in your post, "Thank you MelissaDallas and Icietla for your responses to the question, "Are you aware of anyone who started out with Lobular Carcinoma in Situ (LCIS) or Atypical Neoplasia and eventually ended up at Stage IV Breast Cancer?"
I was diagnosed with calcifications at my very first mammogram when I was 50. I had 22 core biopsies performed, none of which produced any samples. I saw a breast surgeon, who told me that patients in that situation go either one way or the other. Some turn malignant, some don't. She was quite casual and referred me for the usual two yearly mammograms without (i now know) adding any mention that I had calcifications. I had absolutely no idea of the significance of calcifications and duly turned up for my mammograms every two years for ten years before I became seriously ill. Because every single one of my mammograms were reported as clear, breast cancer was the last thing on my mind. By 2015 I was unable to get out of bed I was so weak. I didn't make it to my 2013 or 2015 mammograms but self examination showed nothing. My breasts appeared perfectly normal and, anyway, I was too sick to walk outside, let alone go out. Suddenly in 2016 my left breast changed shape radically so we called a lab who would take blood from me at home. My CA 15.3 report showed a result of 784 and "metastatic breast cancer". My husband organised a morning of tests for me the next day and I was wheeled from one to another. I was in a very poor state. It was obvious immediately on ultrasound that my left breast contained only a 2cm ductal tumour but the right one was a mess. It contained a lobular as well as a ductal 10cm tumour plus activity in the sentinel node yet external appearances were completely normal. I can only think that the lobular tumour was hidden and the ductal tumour was hidden by the lobular tumour. I immediately had a bilateral mastectomy with 29 lymph nodes cancerous and removed. Bone scan showed extensive mets to the bones. My entire skeletal system is covered in mets so I was staged as de novo Stage IV. The tumours were 95% to 99% hormone positive so I'm taking Ibrance and Letrozole and will be doing so for the rest of my life. Quality of life isn't great because of pain and difficulty with mobility but my health has improved radically since treatment began.
My advice to anyone who is diagnosed with calcifications? Follow up and keep following up even if your breast surgeon tells you it's unnecessary. If I'd been given the advice to have a bilateral mastectomy at the time, I certainly would have had to think hard about it but, with hindsight, I would have been healthy now with no sign of cancer in my body.
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Rosabella, the DCIS patients in this recently published study did not have Endocrine THerapy, but the report may be helpful to you anyway.
Standardized Mortality Ratios of Major Causes of Death by Age, Diagnostic Period and treatment"Importantly, the women in our study population were not treated with tamoxifen as part of DCIS treatment, because the clinical guidelines in the Netherlands do not recommend endocrine therapy for women with DCIS."
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thanks icietla.
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Nice articles, Icietla. Thanks for sharing.
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Thanks for all the responses, Icietla (does that translate to here and there?) and Leapfrog.
"my health has improved radically since treatment began" - very encouraging Leapfrog. What an ordeal you have been through.
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You are welcome.
>>does that translate to here and there?<<
Yes.
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Can someone explain what this means???? Bone scans are clear but MRI detects 5 spots??? L3 and some T numbers? I am so confused? I am told they need to do a biopsy? Truthfully, I am so tired of being a human pincushion. I just don't understand anymore.... I am getting angry and tired of all this stuff. Life before this diagnosis was simple and I just don't understand. Believe me, I try to understand EVRERY DAY and it just makes NO SENSE!
Finally, I thought we were so ahead of this disease. I'm not sure what to believe anymore....
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Hi njgirll13, your report in speak that you can understand.
Your bone scan showed no uptake to suggest mets but your MRI has detected some small spots in the Lumbar (L3.....down at the base of your spin) and in the Thorasic (T numbers.......the area in your mid spine from about your shoulder down). They are suggesting a biopsy to either confirm or rule out mets. The area with the prefix 'C' is your Cerviacle spine, basically your neck.
All vertebrae are numbered so the numbers next to the letters as in L3 and T.... and C.... denote which vertebrae.
Hoping this explains things a little clearer for you.
Good luck, I hope your biopsy comes back clear and those spots just turn out to be something like arthritic changes..
Love n hugs. Chrissy
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Chrissy,
Thank you for your response. It is starting to make sense,
Love and hugs to all,
Kelli
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Thank you Chrissy sooooo much for starting this thread.
I don't know if this question has been posted or not, but how can they tell the difference between arthritis on a bone scan and bone mets? My fear is that they are saying it's arthritis because my cancer wasn't aggressive, but it's actually bone mets.
Another question is curiosity really. I see you Chrissy with basically the same cancer as me only yours was quite a bit bigger, how did they know you had mets? The only reason I had a bone scan done is because the ER doctor found spots on my spine on the CT scan.
{HUGS}
Cheryl
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Hi Cheryl. The Radiologist has spent a long time learning to tell the difference between mets and arthritis but basically the difference on bone scan is, the bone mets take up more of the radioactive isotope so making them far more visible on the film. At this point, unless you are in excruciating pain, I wouldn't worry too much.
I had a lot of pain and thought it was caused by the bursitis in my shoulder. It wasn't until I saw my Surgeon for my five year check up that he decided to do a bone scan to rule out mets.........unfortunately for me, they were confirmed. I have been in total remission for a long time now and as of eighteen months ago, off all medication. I obviously have a lot more to do on this earth.
I sure hope you can put this one in the closet for now and get on with the day to day events of living.
Love n hugs. Chrissy
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Chrissy that is wonderful news about your remission! Unfortunately I am in pain, but that could be arthritis as well. The spots were apparently small. I am waiting for my hospital records to be done so I can pick them up. Was suppose to have them last week. Thanks for responding, I appreciate it.
Cheryl
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