Pain in joints—menopause or cancer??
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Yes, it was by my collar bone and almost size of a ping-pong ball.
The point is - we are all only NED (no evidence of disease). No matter how successful our treatment(s), they are not cures. It pays to be vigilant, just don't let it take over your entire life & brain.
Jon's Girl - sorry to get off topic. Passing back to the joint pain discussion.
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Scans - seems like with everything else, there is a difference in what DRs order and what insurance will pay for. I've been told that if CT no longer finds tumor, A PET or other image would not be used to monitor. Risk of radiation outweighs benefit of finding something that might not be there. Really hoping that CT can no longer find the tumor. CT tomorrow. It shrunk from 2.5 cm Sept 2019 to 7 mm April 2020. I went for 2 1/2 years with no imaging after bi-lateral and only very cursory manual checks. Swollen right arm (nodes removed on left side only) sent me to urgent care with an eventual diagnosis 2 1/2 months later of tumor in R-axilla. I'm wondering if oncologist thinks that the Ibrance/Arimidex will eventually fail. Why would she suggest surgery if tumor is shrinking? Also has suggested that the Ibrance/Arimidex would probably be Rx'd even if tumor seems to be gone. I guess for rogue cells which surgery will not get.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018. No more imaging, only cursory exams for swelling etc.
2019 - Swollen R-arm (nodes removed on left ony). Eventual Dx, tumor in R-axilla. Start Ibrance/Arimidex Sept 2019.
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Lilly,
Which scans did you have last year to determine your stage?
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Once I had my biopsy that come back positive for ILC, I had an MRI. MRI didn't show any positive lymph nodes or cancer in the other breast. This is the only scan I had. It was my decision to have BMX. The pathology report after the surgery showed 2 lymph nodes positive in the side of ILC, other locations of ILC in the same breast, and the other breast had LCIS but nodes were not checked. I don't even know if I am stage 1B or so. MRI before surgery was the only scan I had. As soon as I started anti-hormone therapies (lupron+letrozole) I requested DEXA. That's all! Even though ILC can't show on the scans, I have been discouraged to have other scans.
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Updated: I removed my post as not related to the initial topic.
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Thank you Mika. I asked my previous MO the same question and she said that's why we are giving you Letrozole, in case there are cancer cells in your body, letrozole will take care of them. She didn't know the answer when I asked if letrozole will starve cancer cells to death or just not let them multiply. My new MO said letrozole will do both. Based on the last 2 MO I went to, scanning is not needed. Nowadays, they don't believe the chemo helps fight ILC. I am going to a well-known cancer center, I hope they know what they are doing. What was the size of your ILC?
Do you do blood tests when you have the usual check-ups? I'm asked for blood tests to make sure the liver and kidneys are handling the letrozole. I am also recommended and it is optional to start in Zometa since there is some research that says it slightly decreases recurrence and I am in a dilemma to do it or not. It will be 2xyear for 3 years. Do you have any experience with this? Anything else you Ladies recommend I should ask?
Hugs
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Hello Lilly,
I am so sorry if I scared you. I think my case was more advanced. Plus I have BRCA2 gene mutation.
Maybe this is why I am monitored carefully.
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Mika, I appreciate you telling me your experience. We learn from each other's experiences and that's why we have good questions for MO. What size was ILC? ILC behaves so differently from other BC. I actually asked for radiation but I was told that would create more harm than good in my case, probably because it was close to the heart.
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Lilly,
I've just noticed that I wrote a private message for you and did not send it.
And was surprised that you are asking about the size. I fixed that issue 😉.0 -
AIs (for me, Arimidex) seems to cause stiffening of joints, for me,in particular, hands. Staying active and hydrated help. Diet may also help. This article describes "best" and "worse" foods for arthritis. Also has a few recipes. The article does not describe drugs that may play a role in arthritis.
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Great article BlueGIrl. Thanks for posting.
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Hi Ladies, I developed joint pains similar to arthritis after I started AI and I was checked and I don't have arthritis, which means they are just SE of AI. In the last few days, I have been feeling better as joint pains go, but I have mostly one side of the body muscle pain especially if I try to carry weights for work out. It is been the second week I am using Glucosamine and Chondroitin and it seems to be working. I don't want to jinx it
) I am using turmeric as well. My latest problem is that my blood pressure goes very low. I always had low blood pressure in general but not 80-40!!! I can't even drink wine to pump it up Anyone with similar problem? 0 -
Minus two:no worries. Sorry I haven’t been chatting too much. It’s good tho that you ladies were able to chat about what you guys were chatting about. No worries.
Lily was here: I’m not on AI’s. My original post was talking about pain after menopause I think. But I do know women struggle with SE pain from AI’s. I think that was brought up on this thread. So hopefully someone shares their experience. Sorry to hear your having SE’s of the AI.
I tend to have lower blood pressure.
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LilllyWasHere - once in a while my BP does drop to 90/50, usually about 115/65. I take BP med. I wonder if cancer or meds trigger occasional drops. Before cancer BP meds kept it about 125/75, sometimes a little higher
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This is wonderful news! Are you now on Letrozole???
I am on Letrozole 6.5 weeks and the joint pain and stiffness in my fingers and hand overall keeps me up at night.
Anyone here has this experience and did anyone use Thorne Research Meriva Curcumin or Boswellia???
I need something to help me with this pain - I am also doing all the ostearthritis exercises and while they do help - the pain is still there. I know that I was diagnosed with very mild arthritis in my hand/finger joints by a rheumatologist March 2020.
Thanks,
gds
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gds - No experience with Letrozole, but generic anastrozole caused immediate discomfort/joint issues in hands, so I stopped, It took a couple of months for aefects to go away, then started Tamoxifen. With a new cancer, now on Arimidex and Ibrance. The Arimidex seems to have less SE than generic, but definitely there. I guess it is loss of estrogen and who know what else. GAIA tumeric (joint formula) seems to help, so does acupuncture. I just started taking boswellia
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Gds I tried Thorne meriva curcumin. But I didn’t find it helped me really. My husband says it helps him tho.
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