stop the madness

Posted by jeaniebean @jeaniebean, Nov 22, 2020

I just stopped taking my AIs. I just cannot take it anymore. In 3 days I can walk again, I have clear brain thinking, my fingers dont ache, my bones dont ache, and I am not afraid anymore......

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@cctoo

Thank you Cashimire....surgeon told me she wouldn't touch nerves or muscles but work around them....doing limited dissection at my request as am 86 and afraid of lymphedema. Nurse said everyone gets it!!?..how long before you can resume normal life?? Is numbing painful?

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I don't think it is accurate that 'everyone gets' lymphedema...I watched a Mayoclinic video and the percentage quoted was 17 to 21% of those with some sort of lymph node removal (including dissection) are affected by lymphedema. No the numb parts are not painful, just numb (so a strange feeling). I asked my surgeon if she had to cut any nerves and she said no, expect that peripheral nerves were cut for the mastectomy I had, so have strange nerve pain there. I try to go about my daily activities with the left arm, and do the exercises they recommend, and now can almost reach vertically with that arm, but not entirely. I wonder what your Dr means by limited dissection. I had 8 nodes taken out 2.5 yrs ago with my first bc and another 8 nodes this 2nd time (since a 'sentinal' node was not detected). I like to think maybe there are still some protective nodes left, since I've read that we have anywhere from 20 to 50 nodes in that area.... I am 70 yrs, and I can relate to your worry at your more advanced years, but I don't think lymphedema is inevitable. Also, there are meds for the pain, but I like to avoid meds so just endured it, but again it is now much more bearable than the first couple of weeks. All the best to you! We shouldn't have to be in this rocky boat!

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@cashemire

I don't think it is accurate that 'everyone gets' lymphedema...I watched a Mayoclinic video and the percentage quoted was 17 to 21% of those with some sort of lymph node removal (including dissection) are affected by lymphedema. No the numb parts are not painful, just numb (so a strange feeling). I asked my surgeon if she had to cut any nerves and she said no, expect that peripheral nerves were cut for the mastectomy I had, so have strange nerve pain there. I try to go about my daily activities with the left arm, and do the exercises they recommend, and now can almost reach vertically with that arm, but not entirely. I wonder what your Dr means by limited dissection. I had 8 nodes taken out 2.5 yrs ago with my first bc and another 8 nodes this 2nd time (since a 'sentinal' node was not detected). I like to think maybe there are still some protective nodes left, since I've read that we have anywhere from 20 to 50 nodes in that area.... I am 70 yrs, and I can relate to your worry at your more advanced years, but I don't think lymphedema is inevitable. Also, there are meds for the pain, but I like to avoid meds so just endured it, but again it is now much more bearable than the first couple of weeks. All the best to you! We shouldn't have to be in this rocky boat!

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My Dr was doing a complete dissection and I thought that if she'd just take out fewer nodes would be easier surgery as had trouble with anesthesia in 2016 during lumpectomy. Felt like heart attack pain...didn't mention mastectomy to !e but I wondered, if breast drains into nodes and they have cancer in them shouldn't I have breast removed?? Did you have mastectomy first time or this time? The cancer is slow growing report said 5% ki67...concerned mostly about tube and pain with that stitched in left side ..am left handed.

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@colleenyoung

Hi @fightcancer1000 it’s so hard to hear that news, that the cancer is back. Getting through it the first time is hard enough. It sounds like you had an especially hard time with chemo the first time around. It is likely that you will be getting a different chemo drug or mixture of drugs, so you may not have the same reaction or side effects this time around. Be sure to let your team know about your previous experience.

Fightcancer, you may wish to join other members in this discussion. Just click the link to join in.
- Breast Cancer Recurrence https://connect.mayoclinic.org/discussion/breast-cancer-recurrence/

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Thank you for your response and encouragement. I appreciate it so much.

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@cctoo

My Dr was doing a complete dissection and I thought that if she'd just take out fewer nodes would be easier surgery as had trouble with anesthesia in 2016 during lumpectomy. Felt like heart attack pain...didn't mention mastectomy to !e but I wondered, if breast drains into nodes and they have cancer in them shouldn't I have breast removed?? Did you have mastectomy first time or this time? The cancer is slow growing report said 5% ki67...concerned mostly about tube and pain with that stitched in left side ..am left handed.

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Hello cctoo,

I don't know the details about your situation, but normally I think the first step is a biospy of something suspicious in the breast and if cancer detected, then the dissection to see if it has spread to the nodes. Is your Dr suggesting another lumpectomy rather than mastectomy? To answer your question: I first had a lumpectomy and this second time a mastectomy and axillary dissection.

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@cashemire

Hello cctoo,

I don't know the details about your situation, but normally I think the first step is a biospy of something suspicious in the breast and if cancer detected, then the dissection to see if it has spread to the nodes. Is your Dr suggesting another lumpectomy rather than mastectomy? To answer your question: I first had a lumpectomy and this second time a mastectomy and axillary dissection.

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I had lumpectomy in 2016...now ultrasound found enlarged armpit node...1cm..had biopsy and found cancer but nothing in either breast, just the node..now dissection is what two surgeons said...both said no mastectomy... But if cancer which is invasive ductal is coming from breast into lymph node I need to ask why no mastectomy. 😣

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@delormv

Hello @fightcancer1000,

I'm so sorry to hear that your cancer has returned. I had breast cancer a year ago and now have atypical lobular hyperplasia, so I know the feelings associated with another diagnosis. My second diagnosis isn't cancer, but I know how you're feeling. I had a reaction to chemo treatments as well. I'm not sure if the reactions you are talking about were during the actual administration of chemo, or how you reacted to chemo a few days following infusion. I had, I think, was an allergic reaction to chemo right at the beginning of starting the second cycle of chemo. My blood pressure went sky high, I became very flushed and hot, and had trouble speaking (not slurred speech - just couldn't get any words out). They pumped me full of meds and gave me a half dose of Xanax to calm me down. They started treatment about 15 minutes after the reaction and I was fine. Before administering subsequent infusions, they gave me meds to combat any reactions and no other reactions occurred. At age 63, you are still young and have a long life ahead of you. If chemo is recommended and you're not comfortable going that route again, then get a second opinion. There might be other treatment options. If a reaction to the chemo is the deciding factor, then speak to your oncologist about your fears and what can be done to combat the reaction. If it's anxiety about treatments, ask for something that will calm you down before your treatment starts. Believe me, the 1/2 dose of Xanax made me relaxed but not "out of it" and treatments were much better. Don't let fear control your decisions....make your decisions once informed. I wish you well!

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Thank you for your kind and encouraging reply. I appreciate you taking the time to respond.
The reasons for my concerns is that chemo impacted my immune system very badly the first time affecting my white blood cells & haemoglobin so I was concerned as it also affected my heart.
I will make a decision in due course after deeply thinking about it.
Thank you once again for your kindness.
Take care

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@cctoo

I had lumpectomy in 2016...now ultrasound found enlarged armpit node...1cm..had biopsy and found cancer but nothing in either breast, just the node..now dissection is what two surgeons said...both said no mastectomy... But if cancer which is invasive ductal is coming from breast into lymph node I need to ask why no mastectomy. 😣

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How are you dear Catherine?

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@jeaniebean

Thanks for your share. I am 68, and I try focusing on quality, because this is affecting everyone around me, especially thru covid. I may try again, with breaks, as there is nothing else to take. I fear the damage these drugs do to other parts of y body is more troubling.

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Hi, I’m new here and just read this. I was was diagnosed in 2012 had lumpectomy, chemo, Herceptin, & radiation then took anastrozole for 9 years. I completed it September of 22 to this day I wake up tired in pain takes 2 hours to use my hands feet are always numb and pain and inflammation throughout my entire body! Brain fog is something I just learned to live with! Just writing this I keep getting confused! I gave up on my oncologist they think I’m crazy or something else is causing this! I know it’s from that medicine! I don’t think I’ll ever be the same! They don’t warn you about any of this!! I’m at the point I think I’d rather get hormones and have a quality of of life rather than quantity of life!! Idk what to do!?!?!?

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@cashemire

I don't think it is accurate that 'everyone gets' lymphedema...I watched a Mayoclinic video and the percentage quoted was 17 to 21% of those with some sort of lymph node removal (including dissection) are affected by lymphedema. No the numb parts are not painful, just numb (so a strange feeling). I asked my surgeon if she had to cut any nerves and she said no, expect that peripheral nerves were cut for the mastectomy I had, so have strange nerve pain there. I try to go about my daily activities with the left arm, and do the exercises they recommend, and now can almost reach vertically with that arm, but not entirely. I wonder what your Dr means by limited dissection. I had 8 nodes taken out 2.5 yrs ago with my first bc and another 8 nodes this 2nd time (since a 'sentinal' node was not detected). I like to think maybe there are still some protective nodes left, since I've read that we have anywhere from 20 to 50 nodes in that area.... I am 70 yrs, and I can relate to your worry at your more advanced years, but I don't think lymphedema is inevitable. Also, there are meds for the pain, but I like to avoid meds so just endured it, but again it is now much more bearable than the first couple of weeks. All the best to you! We shouldn't have to be in this rocky boat!

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I had the minimum number of lymph nodes removed with my mastectomy. I developed a seroma that eventually required a tube drain after numerous fluid extractions. Once that was gone, I had the mild lymphedema to deal with on my left side. Massage by a physical therapist was prescribed twice/week. After a couple of months I was released and much improved. Worth a try.

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How are you doing?
I couldn’t take the joint pain and fingers all stiff from all 3 tries on different AI meds . On a month of tamoxifen I was so depressed crying which is not like me. Bladder leaks not like me. So at this I’m off everything waiting to see what dr suggest after my 3week break. I am Her 2 + , went through lumpectomy for 2 tumors , chemo and radiation fairly easy . This I did not expect from the pill just awful. Than the fear of not taking it .

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