Tamoxifen and poor wound healing
I have posted before and I am about to lose my mind. Ever since I started Tamoxifen, I have been getting constant anal fissures. This happened when I started taking it last year. I've tried every single cream in the book, seen numerous surgeons and a GI, had surgery (which ultimately failed due to the skin issues I'm having that are more than likely due to Tamoxifen and the Lupron I was on), and have pretty normal bowel movements. No matter what I do, I cannot seem to heal. My skin in the anal area is thin and fragile and cracking and just will not heal and my colon and rectal surgeon was shocked when he saw it and said it looked like my skin was that of a 90-year-old woman. I do not know what to do anymore.
I have read multiple studies about Tamoxifen and poor wound healing and have heard that many women stop it (even if temporarily) when they have any kind of surgery. Has this been everyone's experience? Can it cause skin thinning like that and poor healing?
I cannot take this anymore. I live every single day in fear of the bathroom and pain. It seems like nobody can help me. My oncologist refuses to see any link between these drugs and fissures. I just CANNOT do this anymore. I am in horrible pain today and it's Thanksgiving. I can't function. This is ruining my life. I don't want breast cancer to come back, but I can't do this anymore! It's gotten to the point where suicide seems like a better option than living like this anymore. It is that bad. I even told my oncologist that. She didn't seem to care and just told me to see a therapist (which I am, but only does so much good since they obviously can't take away the pain I'm in every day).
Sorry for the rant, but I am so frustrated and am so lost...
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Hi. So sorry! What about a new onc? What about ovarian suppression then an AI? I'm not familiar w/side effects of Tamoxifen as I stopped taking it after 2? 3? months due to my own weird SE on it. My onc put me on Evita as I was pre-menopausal. Good Luck.
J ~
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Hi Jaybird,
I tried Lupron, but quit since it made the fissures worse. I have been off it for about 2-3 months and still have no period. Still have hot flashes. It's like I never quit it. : ( Guess it takes a long time for estrogen to return.
I honestly just want to quit hormone therapy all together. If this is what it's going to do to me, life isn't worth living like this. I guess I need another oncologist. My current one doesn't care about how bad side effects are. She just wants you to keep taking the drugs even if your quality of life is awful. Never heard of Evita before. Is that similar to Tamoxifen? I am pre-menopausal. My last period was February before I started the Lupron and it hasn't returned.
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Hope someone comes along and offer you their relevant experience, and hope that you find a lasting solution. Terrible things that come with treatment, in the end, it is OUR choice to treat (or not). Sounds like your current onco is a dud. Where are you treated? Stanford? Kaiser? UCSF?
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just brainstorming - tried a bidet? I've read no toilet paper, no washcloth.. rinse, pat. Won't fix skin thinning but might help with fissures?
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peridot - I'm so sorry you're in so much pain. I took Tamoxifen for over 2 years, but I did not notice poor wound healing. I do have dry skin and need a heavier cream than before. I've started using fresh aloe gel, and as I read about it, I remember seeing that aloe helped with anal fissures. I'm just learning about aloe to boost my immune system, but it may help you.
There are some supplements and food that I started during or right after chemo to help me heal in general that I still use: vitamin D, magnesium, bone broth, prunes, and kelp (don't want to have another episode of constipation with severe sciatica).
I don't know what you've tried, but the only other thing I would suggest is cold-pressed coconut oil. I wish I could help you more.
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I don't know if it's related or not, but I had extremely slow healing after a dental implant surgery correction in July and tooth extraction in early August. I started Tamoxifen in July. It took me close to three months to reach a stage that others reach in a few weeks. I also have a history of multiple surgeries in the same area, so that, along my age and dentist's skill (??), may have caused it.
I also wanted to pass on suggestions re: the sensitive skin. I have extremely sensitive skin and get rashes easily. Before I started Tamoxifen, I had to be careful re: anal irritation. For example, when traveling regularly for a job, I had to buy my own toilet paper because the hotel's was too rough. Combine this with bitter cold weather and dry skin, I had a painful outbreak that lasted about 2 weeks. I have learned that if I experience any itching, I need to pull out Desitin and use it for 2-3 days until it clears up. The itching precedes the pain. Otherwise, once the inflammation reaches a certain stage, it's so bad that a prescription is needed. For example, just having an adhesive bandage after a breast biopsy for a day set off a nasty rash that took me about three months to clear up, I finally turned to a prescription, it just wouldn't go away. I see a dermatologist regularly, I don't know if you have done this or not. Once my rashes / inflammation reach a certain stage, no OTC medication will work, a high-dose steroid cream or other prescription is needed. I only use the prescription to get the inflammation down, then it's maintenance/prevention. Your dermatologist may suggest special soaps, for example, and creams to use on a regular basis. She may also suggest different fabrics.
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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.
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To correct my post: I took Evista when I couldn't tolerate Tamoxifen. Sorry for the typo!
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Peridot180,
Are you a candidate for oophorectomy? I'm not sure how old you are or if you want children?
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Jaybird - Does Evista do the same thing as Tamoxifen? Maybe I could tolerate that better?
I don't want kids. I'm 37. My onco advised against it. It's a permanent thing, so I would rather not. If my body can't even tolerate Tamoxifen, I don't even know what it will be like without my ovaries and no estrogen at all. I would rather just take the risk and stop everything. I am leaning toward that right now. I simply cannot take this anymore. But I will seek another opinion from a different onco first (if my insurance covers one). I don't see my current onco until April. I already quit Lupron since it made everything worse for me. My onco was very against that, but I don't care anymore. I am tired of suffering.
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Peridot - can you talk to a different MO for a second opinion? Or at least discuss taking a "drug holiday" to see if the tamox is the culprit? Honestly since it's totally tanked your quality of life, it would be worth it to me to try anything.
I have used a cream called Mycalog and then Mycalog II for years on anal cracks.Originally prescribed by my GYN. It's been generic for some time and is a mix of Nystatin, Triamcinolone and Acetonide. The mfg was Taro. The last time I tried to refill it was no longer covered by my drug insurance. Urgh. My problems weren't near as bad as yours sound, but I did get relief from this after several days application. Rx says apply 3x a day.
Edited to say - is here any way you can get to Stanford or in to USF for a consult? THey are both NCI hospitals. As is UC Davis in Sacramento. A teaching hospital usually has more resources & options.
Please do let us know what you decide to try.
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Hi Peridot,
Can I ask a few questions about prior treatment? An anal fissure is a tear in the lining of the anal canal and a chronic anal fissure is normally caused by a deeper tear that never healed. Do you by chance have any inflammatory bowel disease of the gut? I noticed you got heartburn when you first began tamoxifen. Are you still taking a PPI? Are you avoiding spicy foods?
Sometimes, people who have anal fissures have an imbalance of anal pressure that prevents blood from circulating around the anus and the nearby muscles which can cause a spasm in the sphincter. These are treated with Botox injections or creams that contain nitroglycerin or diltiazem to open the vessels & increase blood flow. This condition is not uncommon & not due to a cancer treatment alone.
Of course, you need to have plenty of fiber & lots of water to prevent constipation. What surgery did they do? There is one in which pressure is relieved in the anal canal so blood can flow more easily. You can also have prescribed lidocaine cream for when the fissure is open to relieve pain. You may also need stool softeners. It is important to avoid constipation!
I used to live in the South Bay so I'm pretty familiar with the rich healthcare in the area. There is a good Sutter wound healing center in Antioch. You will want a gastroenterologist specifically to take a look at your wound. You might need an anoscopy for the doctor to get a close look. You might need some hyperbaric treatment to the tissues as well.
It may be worthwhile to consider going off your tamoxifen for a few weeks so a gastroenterologist can get your anal canal healed. The decision does not have to be a permanent one.
Good luck!
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peridot180 ~
My onc (back in 2005) suggested Evista when I couldn't tolerate the Tamoxifen. He did not suggest ovarian suppression with an AI. Chemo put me into menopause during chemo but less than a year later my periods came back. I was 44/45 at the time. I had no side effects on the Evista. It is good for your bones. After you get a 2nd or even 3rd opinion I hope you can make some decisions. I went happily along my way with no follow up after my 3rd onc left the hospital group I was in maybe 8 years after DX. Blissfully living my life. lol. Keep in mind that once you have BC you are more likely not less likely to get it again. Good luck!
J ~
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Peridot-- You sound a lot like me. We're the same age, triple positive, and forced to suppress our hormones. If I were you, I would stop taking tamoxifen and get a new oncologist. Perhaps, if you try tamoxifen again in a few months without the lupron, you will do better. Don't give up! Feel free to message me, if you want to talk!
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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.
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peridot - holding your hand virtually, even if it doesn't help much. Wish I could bring you some chocolate!!!
I wonder if you could at least have a phone conversation with someone at UCSF? But I do understand that Covid has turned everything upside down.
I'd forgotten, my OB/Gyn prescribed estrogen cream some years before BC. There are some discussions on this site about whether the added estrogen would hurt, and I think that several people agreed that a VERY small amount would probably be OK. I'm not great with computers, but you can likely find the discussions with the "search" option.
I'm not ER/PR positive so never had to take Tamox or Als - and I'm not a doctor - but...
If I felt as desperate as you sound, personally I'd take a damn drug holiday from Tamox starting right now, today. See what happens with the fissures. Keep a record of when you started & when you stop, then you can discuss it with a new MO. That said, I'm a lot older than you are, but my mind & heart have always gravitated towards quality of life over length of life. I understand when you say life isn't much worth living with no quality of life. It may come down to a choice between fissures or stopping the drug & settling for the possibility of a recurrence of the cancer. But you might as well find out if your supposition is correct.
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I get my Estrace cream prescribed to me by my gyne. It has totally
restored my vaginal atrophy. Lack of estrogen makes all skin thinner (I think).
My gyne (and a previous gyne) understands how lack of estrogen affects women in so many ways.
My onc doesn't like that I use it but I use so little and both my gyne's stated that so little is absorbed
that it doesn't affect the entire body, just where its applied locally.
J ~
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Peridot good grief that drug is doing a huge number on you. I am so sorry your body is reacting like this. I hope your MO will discuss options such as a drug holiday to allow your poor body to reset, changing your dosing schedule to twice a day 10 mg pills vs a single 20 mg pill (that one was a life saver for me for side effects), switching you to Evista or another SERM - there are others than tamoxifen - , or for goodness sakes prescribing some estrogen cream for that area. You have to get that healed or nothing else is worth it. I am finding the lack of concern about such a quality of life issue alarming. I hope you find an MO that treats the entire you, not just the specter of cancer.
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Peridot,
Thanks so much for the background. You really have gone through lots of treatment. I have to agree with Minus & Rah. It sounds like you need a tamoxifen holiday. So many stop it for aches & pains - not to diminish aches & pains. They certainly affect quality of life as well. But, your continued non-healing anal fissures puts you at continued risk for sepsis which is a severe complication.
Things might become more clear after a month or two off tamoxifen.
All the best,
Jane
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Thank you everyone for the kind words everyone. : ) It truly has been a miserable year for me. It doesn't help that my MO is not supportive of my choices. I am currently looking for a new MO and hope my insurance will cover someone else.
I have several choices to make right now. My GI told me to go back to my colon and rectal surgeon, so that is what I will do. I don't want any more surgery since it won't do any good from what I can tell. But I have to at least ask his opinion on Botox. I'll ask him about estrogen cream, too. I don't have a regular gynecologist that I go to right now due to insurance reasons, but that's something I need to research, too. I'm assuming any doctor could prescribe the estrogen cream, though?
I wasn't aware there were many options beside Tamoxifen (similar drugs). My MO never mentioned that to me. She just wanted me on Lupron (which I could not tolerate, so I quit it, much to her chagrin). I am still waiting for my period to come back, but it never did after stopping the Lupron months ago. My system is all messed up.
I am scared to stop the Tamoxifen given my age and risk factors, but I don't know what else to do. Quality of life is so important to me and I cannot function like this or make any future plans (which is very difficult for me since I just want to move on with my life!). : ( It would be nice to have an MO that supports me and will help me through this and hopefully I can find someone else who is more helpful and caring.
I definitely need a break from this drug. That's all I know.
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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.
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IF you're not happy with your MO, I don't think you'd want to get a referral from that doc for another one. Maybe ask your colon surgeon instead? Or your breast surgeon. Or your Gyn.
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Peridot, glad to hear you have your next steps figured out. Maybe it will heal on the meds break and then you can go back on later. I def think you should find a new MO...I switched after a much shorter time with the first one I had. Your current one doesn't sound very caring.
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Peridot sending you healing wishes. So glad you are taking the steps to get your health on track. God Bless you.
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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.
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Saw my MO. As usual, she was in a rush to get me out of there (probably did not help that I saw her right after holiday break, as it was very busy in the office).
Long story short, she wants to put me on Femara. I have not heard good things about it. She says I would be taking a risk stopping Tamoxifen and taking a break from it. Aren't all these drugs the same? Don't they all just stop estrogen production? That isn't going to help my skin heal in that area. Again, she refuses to see any link between this problem and these drugs. She says there is no data on it. I explained to her that all of this started when I began the Tamoxifen last October. How can you not see the correlation? She is very data-oriented and does not care much about anything else.
I am thinking of just stopping the Tamoxifen and not going on any other drugs for a couple of months. The risk is worth it to me. I can't live like this anymore.
I did not ask her for a second opinion because I figure she will just send me to someone she knows that will agree with everything she says. So what's the point? I will contact my colon and rectal surgeon and see if he can recommend anyone over the phone. Either that, or try to contact that PA I have and see what she says. I don't know what else to do...
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Hi peridot180, From what I have read on many of the post, no matter the diagnoses, they always say their MO said to take a break before starting a new med. Be that 2-weeks or longer. I took almost a 7-week break when I had my hysterectomy last Feb because I was concerned about clots and healing. Is there anywhere else you can go?
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Peridot, if you are premenopausal you will need to go back on lupron before taking the femara. It's an AI and you need to be post-menopausal. It will be significant estrogen deprivation and probably not help wound healing.
No data on skin healing? Well, unfortunately they haven't done a study on every single side effect from estrogen blocking. That does not mean the problem does not exist.
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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!
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Peridot any chance you can stay on the Tamox and use a small dab of an estrogen cream directly on those tissues? Am I correct in thinking that tiny amounts will absorb pretty much locally and not jump into your bloodstream?
I took three weeks off of Tamox for my recent revision surgery. I simply don't understand the MO not suggesting a short break with a significant issue.
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