Low Risk IDC w/ Baseline Multiple Painful Conditions

Posted by krisrwalters @krisrwalters, Mar 29 1:47pm

I'm wondering what others might do in my situation and would appreciate your thoughts. I'm 65 and have Gr 1, St 1c IDC, 2 tumors: one 10 mm and the other 15, hence the St 1c, brca-, high percentage E+, P+, HER -, had lumpectomy of right breast 4 weeks ago w/ 7 nodes, all negative. Was told by my surgeon that I would probably be offered whole breast rad tx as well as estrogen suppressing meds. I went cold turkey stopping my bio-identical est, prog, test creams (big mistake, what was I thinking??), now I'm slowly weaning them. I'm awaiting Oncotype results and visits with the oncologist and rad onc to hear about recommendations. I have Ehlers-Danlos syndrome (a collagen defect that causes skin to be fragile among many other problems) and chronic inflammation of my spinal meninges (adhesive arachnoiditis). I cannot sit, stand or walk without moderate- severe pain. That leaves the recliner at just the right angle to take all pressure off of the affected areas of the spine, but I refuse to stay there all the time. Some activities are worth the pain. I am currently taking on line classes from the recliner with adaptive equipment for medical coding to supplement my disability. I do not have pain meds because of the opioid crisis. I do have suboxone, which is all that the doctor would prescribe for the pain, and it does help a little bit. I have osteoporosis and diabetes from chronic steroid therapy. My other diagnoses aren't pertinent to the discussion. My quality of life is not very good due to the pain and limited mobility (I use a cane and a walker and can't walk very far due to leg weakness and pain). I have 2 grown sons and older grandchildren and wonderful, caring friends that I do have a lot of joy with. I am not seeking sympathy..I just want to share all this as it will certainly impact my decisions.
When I stopped my hormones, I was unable to get out of bed and walk without intolerable pain. I could not think straight, nausea, etc, etc. I am down to one dose of hormones every 3 days but increased pain won't let me get beyond that. I'm trying but unless this gets better, I can't live in a bedbound state. Then the meds? I don't see how at this point. I do not make collagen appropriately. Estrogen helps collagen production. Logic tells me that my pain and quality will worsen. I could take tamoxifen due to its ability to help osteoporosis; however, things would deteriorate on the med. Logic also tells me that radiation could put me at risk for serious skin complications, (as well as the diabetes) due to the Ehlers-Danlos. This seems like an impossible situation to me. I need to research what the chances are of recurrance that doing nothing would bring. I don't think I would tolerate chemo for obvious reasons. Each therapy could cause long term problems, compounding my poor baseline. What a train wreck, right? I feel blessed to have the low risk cancer that I do have and respect all of the experts abilities to help us. I'm just not sure what true "help" would look like for me. This was probably premature without Oncotype and recommendations. I will report back. Thank you for reading all of this. I feel somewhat relieved in just getting it all out there. Wishing all of you the very best on your personal journeys.

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@krisrwalters

Hi Miriam
I hope this may be of interest to you. In discussing my case, my 3 oncologists believe that my baseline non-cancer pain is undertreated, so because I now have a cancer diagnosis, they have made a referral to Palliative Care for me. I have been concerned that I will not be able to complete my cancer treatments because of the increased pain and I'm sure that the docs are as well. I am very hopeful and excited about this. I wonder if this would be possible for you as well? My next step was to follow your advice about a rehab doctor but this happened before I could contact one. My evaluation for Palliative is May 1st.

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Thanks so much--this is good to know. I'm very glad you have the palliative care referral. I have a good friend who is a palliative care nurse and she really believes it helps quality of life. I hope you get all the pain control you need. Can you check in again if it isn't too much trouble after May 1 and tell me how it is going? Palliative care referral is first thing on my back-up list if/when I need it. Right now my PCP is prescribing pain control, but every so often he wants to double check why I am on it (and honestly that makes me panic, even though so far so good). Your note came at a good time--today is "housecleaning" and even though my husband does the heavy work it is challenging for me. And yet I still want to do because it makes me feel "normal." But I have to stretch a lot and then soak in epsom salts, even for just ordinary housework. So thank you for the reminder of palliative care and also for a feeling of not being alone. Take care.

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@mir123

Thanks so much--this is good to know. I'm very glad you have the palliative care referral. I have a good friend who is a palliative care nurse and she really believes it helps quality of life. I hope you get all the pain control you need. Can you check in again if it isn't too much trouble after May 1 and tell me how it is going? Palliative care referral is first thing on my back-up list if/when I need it. Right now my PCP is prescribing pain control, but every so often he wants to double check why I am on it (and honestly that makes me panic, even though so far so good). Your note came at a good time--today is "housecleaning" and even though my husband does the heavy work it is challenging for me. And yet I still want to do because it makes me feel "normal." But I have to stretch a lot and then soak in epsom salts, even for just ordinary housework. So thank you for the reminder of palliative care and also for a feeling of not being alone. Take care.

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It can be a very difficult and lonely existence. My arachnoiditis specialist once told me that it's pain is worse than that of stage4 bone cancer without the release of death. Some days this is true. My faith and my family keep me here. I'd be happy to report back after my palliative evaluation. I hope I have good news for you as you sure don't need the stress of wondering what will happen to you if your primary wasnt able to help you. I'm worried that they may not accept me because my painful diseases won't be on any list of approved diagnoses even though I'm in my bed or my recliner most of the time due to pain. I can't sit, stand or walk without pain but i do my dishes and laundry anyway. When I go for health care visits or to see part of my grandsons baseball games, I'm done for the day. I don't know how I'm going to make the radiation visits every day. Maybe they would let me wait to start radiation until after May 1st when my pain is, hopefully, better controlled. Take care and I'll be in touch. Thank you for getting back to me!

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