Tamoxifen and poor wound healing

My onco is at Sutter in Vallejo, CA. I do not want to reveal names, though.

Bidets will just make it worse. They can actually CAUSE fissures. Appreciate the help, though.

I have gone through countless creams, surgery, and supplements. Nothing helps. I am at my wits end. I would rather die than live like this anymore and when I'm in the worst pain, I just feel like jumping off a bridge.

I am STRONGLY considering stopping the Tamoxifen. I cannot live like this anymore. I think I would rather take my chances with the cancer coming back than live like this anymore. This has been worse than chemo, radiation, surgery... nothing can compare to this HELL I go through almost every day.

Specialists cannot seem to help me and I have seen them all. I am at the point where giving up the Tamoxifen is my only hope. I really don't give a crap what my onco thinks anymore. She's not the one who has to endure this pain every single day of her life.

MinusTwo - My onco referred me to someone at UCSF, but they are not taking new patients due to Covid. I don't think my insurance will cover Stanford. She got me to see someone at UC Davis in Sacramento and she wants to do Botox, thinking the surgery I had failed (sphincterotomy). My surgeon that did it has 30+ years experience and only had ONE failure in his entire life doing these surgery, so I HIGHLY doubt it failed. The surgeon at UC Davis honestly wasn't much help and just ignored the link between these drugs and fissures. My surgeon who did the surgery told me to stop the Lupron and maybe the Tamoxifen since he said estrogen is important for skin health and healing. Honestly, I don't know who to see anymore. Botox has a high failure rate and has to be redone many times, so I don't know if I want to put myself through that. Plus, the risk of incontinence goes up the more you mess with that muscle, which is already relaxed. The muscle is not the problem; it's the skin, which is thin and fragile like an old woman's. It was NOT like that before starting the Tamoxifen (another colon and rectal surgeon I had that my insurance no longer covers examined me during and after chemo and said the skin looked healthy and thick). So, putting two and two together, it seems like Tamoxifen is the culprit.

Thank you for letting me know about Mycalog. I'll have to ask my surgeon about it. I do not think Mycalog would be a good idea for me, though. I do not have fungal problems as far as I know and it is a steroid. My surgeons said to avoid steroids at all costs, because they can thin the skin. I have been taking Diltiazem and Nifedipine to increase bloodflow so far since those are specifically for fissures. The muscle has been loosened, so technically I don't need them, but it doesn't hurt to keep applying them.

jhl - I have been checked for everything and have researched this extensively over the past year, so I am not uninformed about any of this (in fact, I feel like an expert now after all the studies and research I have done on this, UGH). I do not have issues with constipation or horrible diarrhea. I do not have IBD and have been checked for that. I have acid reflux, but I've had that for years and have been taking a PPI (I eat VERY healthy and never eat spicy food) and the endoscopy I just recently had found no problems.

I was COMPLETELY normal and feeling just fine before starting the Tamoxifen last October. I had fissures during chemo, but those healed immediately after stopping the chemo and were due to horrible diarrhea due to the drugs, which I no longer obviously have. I was feeling amazing after chemo and completely healed. I tried all the creams and even got the sphincterotomy surgery, which is 98% effective. It did not help the problem. The problem is NOT the muscle, which is relaxed now (it has been checked several times during very painful exams), and NOT due to pressure. It is a skin issue. My CRS said the skin is so thin and fragile and cracking. He said it is like the skin of a "90 year old woman" in that area and I have MANY cracks as he saw when I was completely out during surgery. I was checked out by a CRS during chemo and shortly after and he said the skin was very healthy. Why, then, am I getting these constantly after starting the Tamoxifen? There is an obvious link there that I cannot ignore. I DO NOT have constipation issues that are causing this and never had. I am taking stool softeners anyway just as precaution because my surgeon told me to. Even with soft, PERFECT stools, I tear over and over again!

I have done EVERYTHING right and I am still not healed. It is horribly frustrating!!

Thank you for the info on the wound clinic. I will have to check that out if everything else I do (including stopping the Tamoxifen) fails.

Also, a GI will not do anything. I am seeing one and he said anal fissures are not his specialty nor the specialty of GI's; he said always see a colon and rectal surgeon about that. I have seen THREE already.

Jaybird - Thank you for the info on the drug. I will have to look into it after I see another MO.

Tenacity - Thank you. Yes, that is probably what I will do. I have exhausted pretty much all my options. I will definitely be seeing a different MO, one who hopefully will take my side effects seriously. I am so sorry you are in this position at such a young age like me. It truly SUCKS. I thought everything would be over after chemo, surgery, and radiation. This hormone treatment has been FAR worse for me, though. When I would rather die than continue on it, that tells me I should stop it.

To me, it is obvious it is these anti-estrogen drugs that are causing this. I have been through EVERYTHING and seen multiple people about this. I am TIRED of this and cannot function like this anymore!

I am sorry for getting so upset, but I am at my wit's end here. Quitting the Tamoxifen is my only hope, I truly believe. I definitely need to see a new onco because my current one will not help me. Then maybe I can at least take a break from this drug.

Apparently, from my research, women are more prone to fissures when breast feeding, when estrogen is very low. I had several women tell me online to try estrogen cream on the fissures, which I may try. I have no clue who can prescribe it for me, but it's worth a shot.

I will also probably just go back to the original surgeon who did the surgery and ask about the Botox, even though I HIGHLY doubt it will help since it is NOT a muscle problem. My GI told me to go back and ask his opinion before I do anything else that is surgical.

I am sorry for being so upset, but I feel very alone and very lost right now.

Just an update:

I saw my colon and rectal surgeon yesterday and he told me to go off the Tamoxifen (at least take a break). The area NEEDS to heal and something I am on is preventing that and making it difficult, which is probably the lack of estrogen. He said the muscle is no longer in spasm (he did a thorough exam), so Botox would not help me nor will any other medication I can put there (Nitro, Diltiazem, etc). It is a skin problem most likely due to lack of estrogen or something else in these drugs. There is nothing else he or any surgeon can do for me. He encouraged me to speak to my MO about it and take a Tamoxifen break. I have an appointment with her next week. I need a referral to see another oncologist, so if she won't help me and work with me on this, then I will tell her I will find someone else and for her to refer me to someone.

Thank you everyone for your encouragement. This has been a living hell for me and I am going to take the next step of coming off Tamoxifen and seeing how I do, even though it terrifies me. Living like this each day for the rest of my life, though, terrifies me more. I am exhausted and cannot endure this pain anymore. It's destroying my life.

I wish everyone happy holidays and hopefully 2021 will be better for everyone.

MinusTwo - I already saw my colon and rectal surgeon, so I don't really want to bother him again with a referral. Plus, he's not from the same area as me, so I'd prefer an MO closer to my location. I haven't talked to my breast surgeon in over a year and I don't have a regular gynecologist. So I'm not sure who to ask. I don't even have a regular doctor right now (just a PA, who is about as useless as they come).

I have to see my MO next week to get my port flushed, anyway. I'll just see what she says. If she won't help and won't give me a decent referral, I will see if I can get a new primary care doctor in the new year and hopefully get a referral from them.

Thank you, BCat40 and Rah2464. I am praying I can heal. I can't take this anymore. I am definitely seeing a new MO if she refuses to listen to me despite seeing all these specialists, though. It's clear as day to me that Tamoxifen is the problem. There is no other explanation.

Thank you for the replies. It has been hell dealing with this and getting anywhere with my oncologist. I have pretty much given up on her. She just doesn't see any link between this. How can you not when all of this started when I began the Tamoxifen? It's clear as day to me!

flashlight - Thank you for telling me. She just wants to immediately start me on the Femara. I just don't want to do that. She does not want me taking a break. I am currently trying to get a referral to a new oncologist who is not associated with her in any way.

BCat40 - I was on Lupron for a few months, but stopped due to these fissure issues. It has been since September or so that I've been off of it. I have still not gotten my period back. My MO asked if I got my period back and I said no. She then wanted to put me on Femara because of that. My period could still come back, though. I heard it can take months for Lupron to leave the system/stop interfering with estrogen production. She thinks that because it's a different pathway than Tamoxifen that it will not cause the same issues. But it's all estrogen deprivation, right? So how will that help me? It's like she isn't listening to me.

I am trying to get a new referral. The holidays are not helping, though. I contacted my primary care office and first need to switch from a PA to a medical doctor. They have to talk to the PA first to confirm. Ugh... this has just been a huge run-around for me. The doctor's office is located very close to the cancer center (right across the street, actually), so I'm worried they will just send me to someone affiliated with her.

I think I am just going to stop the Tamoxifen and see how I do. It's a risk, but I can't handle this anymore and I'm tired of waiting on opinions. I refuse to take the Femara for various reasons. I just want to heal from this! I am desperate!