Abuse Survivor Struggling With Testing

MTwoman

Glad this next phase was completed, even with the hiccup along the way. You do seem to be doing a great job of advocating for yourself and staying focused on your goal (having the best providers with whom you also feel comfortable). Just wanted to say AMAZING job Dagny!!

If you want info about one version of reconstructed nipples, I am happy to share. I have one as mine couldn't be saved either.

I am sending you positive energy for the best path news possible

chronicpain

DagnyT, though it seems initially odd to see the brother of a colleague, it could subtly work in your favor if he knows you have a work connection with his brother. Though all docs should treat everyone objectively and equally, if there is a relationship connection they know about, they may give that extra little effort. They are human, with human biases, that can be good here.

I have observed that doctors who are patients and their wives, and lawyers and their wives ( though for different reasons) and important or famous people, and friends or friends of friends, not uncommonly get extra attention and care, even when on the same insurance plans, if they make their connections known. Take it when you can get it, this is probably a good thing!

I am hopeful and optimistic for a good outcome on your surgeries.

DagnyT

thanks chronic and MTwoman. Yes, I am feeling pleased that I made it through that surprise and was able to find the positive side of it. And chronic, you’re totally right. I sent the brother than I work with (we’re both finance lawyers) a note and told him I had met his Dr brother. I got an immediate, and lovely, response that I would be in good hands with his brother and that he is even more of a wise ass than my colleague, so I would be sure to like him. That made me feel comfortable enough to laugh and tell my friend to warn his brother that if my “girls” didn’t look good after all of this then I was going to find a way to dig up old brotherly grudges and have my friend sue his brother. So, all lighthearted and overall positive.

I’m now feeling a bit concerned about Lymphedema....did either of you suffer from this? My surgeon did explain the risks to me, but I wasn’t able to focus enough on it when she was talking to me, too much;else to try and take in. Now I’m realizing she said that this was something that could happen even years after surgery....and that scares me. I’ve been working on visualizing a future point next year when this dx is behind me and I amrecovered from surgery and radiation and feeling like I would be functioning normally. A lingering and lifetime risk of some pretty nasty LE symptoms was not in my future plans.

Any experiences to share? Thanks

chronicpain

DagnyT, it is too early for me to know if I will get LE as my surgery was just 11/22/17. Only five nodes were taken with my lumpectomy ( one larger sentinel and four tiny for the ride as they were attached) so odds of LE are very low. I know it can come years later. A key reason I am refusing XRT is increasing risk of LE, but my tumor type is pretty good, and I am 63, and I have autoimmune disease which increases problems with tissue healing.

Keep in mind the vast majority of women, with a competent surgeon ( which you have) do not get lymphedema. The more nodes removed, the greater the risk, however

Georgia1

Dagny, just chiming in to agree. Yay you for being such a good advocate for yourself, and for being strong enough to roll with all the weird surprises this journey brings. I had only one lymph node removed and have had no LE symptoms whatsoever. It is something to worry about later -- if at all - if you have multiple nodes removed. Surgeons definitely try to remove as few as possible.

MTwoman

I have not had any LE, although I did have mx and SNB which both increase my risk (and yes, I hear that my risk persists). I don't allow any blood pressure, vaccinations or blood draws from that side, but other than that, don't do much differently.

lemonee

It made me so sad to read your original post, but at the same time, it made me feel less alone. I definitely share similar feelings. For me, those feelings are the main reason I let years go between my exams, and now I find myself in this position.

Bhmomma

DagnyT-I am so happy to hear you liked Dr Barrio. Sounds like you have a solid plan with physicians who are willing to listen and communicate. Yeah!!

Outfield

Dagny,

One thing to be sure of is that you have a sympathetic anesthesiologist. A lot of times, Anesthesia pre-ops are done by someone other than the Anesthesiologist who will be doing the procedure. The Anesthesiologist is really the one who needs to know about your medications. That person can also really affect your experience. I've had surgery 13 times, all of which have gone well except one unexpected bad (injury, not cancer) finding in my knee. Some of my experiences:

1) I have in my life, twice been in the OR when way more cancer was found once than expected AND the patient woke up after surgery obviously aware of that already. Neither of them had distinct memories of surgery or complained about it, but it was obvious they both had integrated things said in the OR. I was TERRIFIED of my cancer, and I told my Anesthesiologist that I was really scared of waking up the way those two women had. She had been hand picked for me by the surgeon (because I was so anxious) and she offered to give me doses of a medication that blocks memory formation throughout the surgery (midazolam, or "Versed"). She said, "You won't remember anything after this point," gave me the medication, and I remember nothing between then and waking up. That's not true for my other surgeries - even when I had general, I have memories of the OR. I have very clear memories of the idiot Anesthesiologist when the true severity of my knee injury was seen, and I'd rather he had just shut up. So the short of it: you can ask to have memory formation blocked, and you can have control over exactly when that happens.

2) For more of a sense of control, ask to have them let you know when they are going to put you out. My last surgery, they didn't do that and I just lay there in the OR, waiting and waiting, while they didn't talk to me, and it was disconcerting.

I know the PTSD makes us want to get things under control, but with cancer it's just not possible. Take each step as it comes. I would not worry about things like medication and radiation until you're done with surgery, because there are so many unknowns until then. The important thing is finding a surgeon you trust to proceed with your wishes in mind, and it sounds like you've done that. That's been really, really important to me - to trust the surgeon to know what's important to me and what I want.

chronicpain

DagnyT, I understand today was the big day, surgery, I was thinking of you.

I hope things went well and you are doing ok post-surgery

HoneyBadger47

Thinking of you and rooting for you, DangyT

DagnyT

hi everyone. Thanks for checking in and keeping me in your thoughts. I’ve been struggling the past couple of days, so not been posting as much.

Good news is that my first surgery is done and went well. I was able to go home same day, Thursday , and sleep in my own bed. My pre-op seed implantation and node mapping on Wednesday on the other hand was terrible and I’m still struggling with flashbacks and nightmares from that. I passed out twice, once from pain, and the technician took more than 40 minutes to get the seed placed after numerous tries and eventually getting up on the procedure table with me to get the “right leverage”. There was a lot of blood and I was so bruised that my skin skipped red/blue /purple and went right to black. I know that my location was very difficult to work with, but there has got to be some more humane way to treat us....the damage, for me at least, of these barbaric procedures is long lasting.

Today I’ve still got a lot of pain at the sentinel node biopsy site, running from my armpit all the way down to my elbow. My nipple is still there however! And my breast itself doesn’t feel too bad at all. If it weren’t for the armpit incision, I’d be fine with just Tylenol. My surgeon said not to get too attached to my nipple, but that things went well and we just have to wait to see what the final path report says...

So, I will be wishing for a good path report for my New Year’s resolution....

I hope you are all doing well and enjoy the holiday weekend

Georgia1

Oh Dagny, so sorry about all that trauma. Good news tho that you're on the way to recovery with much less hands-on medical care and more autonomy ahead. Joining you in best wishes for a good pathology report and a happier New Year.

DagnyT

thanks Georgia. I’m still having nightmares, but I keep reminding myself that it is behind me and that things going forward should be less invasive and triggering. This stuff is so tough, even without the PTSD added in. I’ll be waiting anxiously for the path report next week and hoping that they got clean margins and didn’t find anything unexpected.

I hope you all have a good New Years Eve and that 2018 brings us all strength, health and positivity.

MTwoman

Dagny, did your psychiatrist ever try Prazosin for your nightmares? It can be very effective. Worth talking about if you've not tried it. Worst side effect can be low blood pressure, that can be problematic if you regularly get up at night.

(edited to include citation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538493/)

DagnyT

Thanks MTWoman. I've never heard of it, but I will read the article you linked. At the moment, I still don't have a psychiatrist unfortunately. My prior one has been great and we have talked twice from Florida, which ahs helped. And through the person that took over her practice she was able to prescribe me some basic meds to help get me through the initial procedures and to this step. I'm also starting to do EMDR again...I found that really helpful 20 years ago and used that for a couple of years to help the PTSD. So I went out and bought myself a set of tappers and am working to figure out the best time of day to set up a routine with them.

Thanks for your thoughts and for keeping track of me!

Outfield

Dagny, I used prazosin some years ago and still keep some as a security blanket. It helps me just knowing that if I have a couple nights of bad dreams I have a way to stop them, I don't have to go spiraling into that cycle of having more and more of them and feeling buffeted by my sleep.

chronicpain

Prazosin is commonly used in veterans with war-related PTSD and can help where SSRIs or trazodone have failed.

Dagny, you have many medical options on top of cognitive management, but you need a prescribing psychiatrist to help you sort out what is best for you as far as meds go.

DagnyT

thanks for sharing your personal experience outfield. I’ve been medication free for so many years that I haven’t done any reading for a long time.

Chronic, I totally agree. I never did very well on meds, even back 20+ years ago. What worked best for me was a LOT of talk therapy and, once it became a recognized modality, EMDR. I have some nasty allergies to certain medications (which were only discovered the hard way after I was given them in an ER after a car accident, thank god I was already in the hospital!). So I try hard to just avoid meds unless they are really necessary.

As my pain from the lx is improving, I am noticing that my nighttime issues are improving. I think that the pain at night, in such a sensitive area (emotionally and physically) is acting as a trigger for me. So hopefully as the pain goes away, I will get some relief from the nightmares too. I’ve also noticed that each time I have had to wait for test results (this is now my third round, waiting for the path report after the lx) I feel the stress and anxiety more intensely. I feel like I’ve lost resiliency with each waiting period. But, hopefully after a decent path report my last wait will be for the onco / mammaprint test.

Thanks for all your continued support ladies!