Thank you, missy moo. Sorry for the late reply. I missed your post.

Did Botox hurt a lot? Did you have a lot of post-op pain? I'm concerned about that. Someone online said you need 15+ shots? Is that true?

As you've read, my case is very complicated since this is mainly a skin issue related to medication (most likely) and not a muscle issue anymore. So, my hope in Botox working is pretty small. But I'll see what a second opinion says.

I have an appointment with the CRS who did my LIS on the 21st. Hopefully I can get some answers from him about where to go from here.

Pain was never more then a bad fissure day and it only lasted 2wks each day getting a bit better. If I was you I would 1 want to see the crs who did lis since he's so experienced an did your surgery and 2 I would dive deep into what strengthens your skin back to what it was before the medication I would talk with the professionals in the cancer field chances are it's a side effect an if it is then there will be treatments already found for this. I was thinking about a few things like taking zink which heals the sink or estrogen which when very low like in menopausal woman it can cause thinning skin drying an fissures in the mouth vagina and anus. I don't know what cancer drugs do you ones vitamin an hormone levels but I'm guessing it strips them all down. I would also look at putting something natural on there to help strengthen the whole area like medical manuka honey, vit e or lanolin I'm sure there's something that will work for you. Also I but off the wall there can be emotional connections to our physical issues so maybe also looking inside an healing any emotional issues with meditation and affirmations. The anus is the dumping ground, letting things go that cause us pain we want to let everything from our past go without pain. Hopefully your crs can help you. I 100% believe the botox is not going to make things worse if anything it mite not help. Also I had 2 rounds so 2 shots 1 year apart first round was 50units second was 100units I would ask for 100 because the 50 didn't help as much it's just 1 needle injected around the muscle. Get in contact with some cancer and or skin specialist. Good luck and start believing that you will heal your almost there life will be amazing again and try envisioning it daily.

Missy moo - Thank you for the reply. I would think Botox would not be any more painful than LIS (which, surprisingly, was not very painful at all, at least compared to fissure pain at its worst). It is something I will consider if all else fails.

I do have an appointment with the CRS who did the LIS on the 21st. I will see what he says. I'll also ask if he thinks IBD could be causing my issues (which I HIGHLY doubt since I don't have any symptoms of it and, again, the problem started after I began Tamoxifen last year... I did not have any symptoms of any IBD, nor do I have any now). I would get a colonoscopy just to rule that out completely, but I am scared of the prep involved and the scope possibly making everything much worse.

My current oncologist is not at all helpful about this. She just sends me to more specialists, who do little good, and refuses to see the connection between these breast cancer drugs (Tamoxifen and Lupron), which alter and decrease estrogen in the body. All my problems started when I took this drugs. I cannot help but see the correlation. Everyone on the breast cancer forum I'm on says to quit the Tamoxifen or at least take a break and see how I do. I just worry because I was diagnosed young (35) with cancer and Tamoxifen can reduce a recurrence of up to 40%. I don't have the exact statistics, though, and when I ask my oncologist she just says "it's complicated." UGH! So, I'm stuck between a rock and a hard place with all this. I don't want to live with fissures like this anymore, but I don't want to take a risk of my cancer coming back. I don't know what to do and it scares me so much. : ( A lot of women take all these drugs, though, and their cancer comes back, so nothing is guaranteed, either. I just don't have anyone who will hep me with these decisions. My oncologist should, but she doesn't see any connection between my fissures and the drugs. To me, it's beyond obvious! I was feeling amazing after chemo, radiation, surgery, etc., then started these drugs and got all these problems. That tells you something!

I did see a dermatologist, but she was no help. She was also just a PA; I don't think my insurance will cover anyone else, but I suppose I could look into that. She just gave me Nitro ointment (The WRONG ointment, mind you... the 2% version and not the compounded ointment) and just shrugged off my skin issues, telling me to just put Aquaphor on it. She was the most useless person I've seen so far besides my "doctor" (also a PA). These people have no clue what they are doing when it comes to these things.

I tried to make an appointment with another oncologist, but I need a referral. : ( So, I have to go see my oncologist again and ask for one since she clearly won't help me. That's going to be awkward, but it's something I have to do.

Estrogen definitely has an impact on skin health. Why it's only affecting my anus and not my vagina is beyond me, though. All I know is everyone reacts to drugs differently and I cannot help but see a connection between all this and these drugs.

Thank you for the advice about Botox. I don't think it would hurt to get it done, but I want to explore other avenues first and see what my CRS who did LIS says about it. I trust him and he has more experience than the CRS I saw at UC Davis hospital does with fissures. The CRS at UCD wouldn't even talk to me about how these drugs are affecting me, but she knows nothing about breast cancer drugs. So I guess an oncologist (one that actually listens to me and takes my side effects seriously, that is!) would be a better help.

Are you completely healed? I really hope you are doing well. These things are awful. I can't tell you how many times I have considered suicide during all this. I am seeing a therapist, but she only does so much good. She doesn't understand the pain I am in almost every day. Antidepressants help a little, but some days are really tough. : ( It's been just an awful year for me (in more ways than one).

Take care and thank you for the advice!

Missy Moo - I thought you left a reply, but I cannot find it now, so maybe it was deleted. I'm sorry for the late reply. I appreciate your kind thoughts.

I saw my CRS (the one who did the LIS surgery) today. He was very kind and understanding. He spent a lot of time with me and we discussed options. Unfortunately, he said there is not much more he can do. He did an exam (which really hurt, but I had to do it) and said the muscle is no longer in spasm, so Botox will do me no good. He doesn't do Botox since success rate is low (only 50% in most cases he said), it's painful, and it more often than not needs to be repeated. Again, he stressed the skin is the issue. I asked him if it could be caused by IBD of some kind, but he said he saw no inflammation when he did the surgery that would be indicative of IBD like Crohn's disease and I have no symptoms to indicate it. He said the chance of these fissures being caused by IBD is slim to none and he thinks it's some medication I'm taking that is destroying the skin down there. He said he was shocked when he used the scope to exam me during the surgery. He said just using the scope caused a bunch of new fissures to form...... Hearing that made me start crying.

He told me to get off the Tamoxifen (at least take a 2 month or longer break) and see how I do since it appears the Lupron is not the issue (although I never got my period back... my system is completely messed up from the meds). That is what I will be doing. I see my oncologist on Monday and hopefully she can give me a referral to see another oncologist if she won't work with me on this. I have had it.

I am tired of living each day in pain and fear. I dread the toilet every single morning and break down in tears when I have to go. This is no way to live. Some days I just want to jump off the nearest bridge and it takes a lot to prevent myself from doing that some days. I can't live like this anymore. I'm in tears typing this out because I feel so hopeless. There is nothing more any CRS can do for me, it seems. The only option I have left is to stop a medication that could possibly prevent breast cancer from coming back. That terrifies me. But I can't live like this anymore. I just can't! I would rather die than continue this way.

Starrysky I understand as much as I can your position in life at the moment, it would be hard to handle but I think if you can try to see things differently and change your mindset bit by bit it could get a bit easier it's our perception that creates our reality it can either be manageable or completely unmanageable and we fall apart. I know your strong because you've already made it this far. You just need to try think positively, advocate for yourself, look for other solutions and tell yourself I'm on the right track I will overcome this. I would recommend you read a book by Louise hay called you can heal your life. This book was a huge turning point in my life I've never been the same since reading it in a good way. I'm a new me an you can be too. I wish I could sit with you one on one and try to help you. Feel free to pm me I'm more then happy to support you till you get through this. Just know it will pass you will have your life back or atleast a new normal that your very happy with. Your stronger then me I would of probably fell apart and I did with multiple health issues so I know we come out of that fog mentally physically an emotionally. We can speed up the process by working on ourselves ie the way we think and the emotional parts of us that need healing. Sending you lots of love hun xx

I haven't been around much, but hoping your're doing better. I got surgery for a fistula. Hoping I am on the road to recovery. Hope you've gotten less pain times now.

StarrySky wrote:Missy Moo - I thought you left a reply, but I cannot find it now, so maybe it was deleted. I'm sorry for the late reply. I appreciate your kind thoughts.

I saw my CRS (the one who did the LIS surgery) today. He was very kind and understanding. He spent a lot of time with me and we discussed options. Unfortunately, he said there is not much more he can do. He did an exam (which really hurt, but I had to do it) and said the muscle is no longer in spasm, so Botox will do me no good. He doesn't do Botox since success rate is low (only 50% in most cases he said), it's painful, and it more often than not needs to be repeated. Again, he stressed the skin is the issue. I asked him if it could be caused by IBD of some kind, but he said he saw no inflammation when he did the surgery that would be indicative of IBD like Crohn's disease and I have no symptoms to indicate it. He said the chance of these fissures being caused by IBD is slim to none and he thinks it's some medication I'm taking that is destroying the skin down there. He said he was shocked when he used the scope to exam me during the surgery. He said just using the scope caused a bunch of new fissures to form...... Hearing that made me start crying.

He told me to get off the Tamoxifen (at least take a 2 month or longer break) and see how I do since it appears the Lupron is not the issue (although I never got my period back... my system is completely messed up from the meds). That is what I will be doing. I see my oncologist on Monday and hopefully she can give me a referral to see another oncologist if she won't work with me on this. I have had it.

I am tired of living each day in pain and fear. I dread the toilet every single morning and break down in tears when I have to go. This is no way to live. Some days I just want to jump off the nearest bridge and it takes a lot to prevent myself from doing that some days. I can't live like this anymore. I'm in tears typing this out because I feel so hopeless. There is nothing more any CRS can do for me, it seems. The only option I have left is to stop a medication that could possibly prevent breast cancer from coming back. That terrifies me. But I can't live like this anymore. I just can't! I would rather die than continue this way.

Hi Starry Sky how are you doing now? Did the fissure healed now?

Anyone else something bad happened? That last message was scary.

Cryptokitty311 wrote:Anyone else something bad happened? That last message was scary.

Yes, it is horrible - almost hard to believe. But YOU need to focus on the good - LIS has a 96% success rate. If you look for those 4% where things went bad, you will only make yourself more stressed and worried. You will be fine.

Starry Sky I am so sorry you are going through this ordeal. Have you given any thought to traveling out of state (or the country) to see the best CRS surgeons in the world at a place like Mayo Clinic? It sounds like you are out of options and need the best of the best taking caring of you. My CRS Dr. John Park was the head of the CRS department at Lutheran General Hospital in Park Ridge, IL (next to Chicago). I wasn't going to settle for anyone but the best for something like an LIS. I refused to see any of his other surgeons in his practice. I wanted the man himself. Best of luck to you.