feeling helpless- worried about pagets
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Hi Kathabus, thank you so so much for your message, it means a lot to me. I have been feeling so alone through this waiting journey. I am faking it in real life so I don’t cause unnecessary worries for my family and friends. But it is taking a toll on my anxiety and mental health.
My mother in law passed from stage 4 BC in 2013, I helped with her care the last few months before she passed. I saw my husband suffered, I’d never forget his sadness. I love him so very much and I prayed that he doesn’t have to go through that again. When I first noticed symptoms, that’s the first thing that came to my mind. I also have a young daughter, whom I gave birth to at 27 weeks gestation. She’s 5 now and doing great- I know I suffered PTSD from her birth. But I have never dealt with the amount of anxiety I have experienced the last few weeks.
The waiting is excruciating, I wish they’d send me for the MRI right away, but the surgeon wants me to schedule when my next period comes- I wasn’t explained thoroughly the reasoning behind it. She explained that I had a clear mammo/US and it is not emergent but I wish the providers know the emotional impact that it is causing the patients.
I have been using the cream- I put the smallest amount possible on the affected area. I am too afraid not to use it. But the lump I discovered yesterday, it just pushed me off the edge. I feel like everyday I wait, there’s a new symptom. I am not quite sure how I’d make it till next week for the MRI.
Thanks for listening.
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I was able to stay off Google for a few days, taking it one day at a time, an hour at a time. Focusing on getting to the MRI which is scheduled for next week.
This morning I woke up with my nipple glistening. It used to ooze only from the top half of the nipple but now it’s all over the nipple. I also saw some weeping on the areola. My affected nipple has what my BS called a large amount of sebaceous hyperplasia and it seems to be where the oozing is from on the areoIa. I also noticed the areola had a slight swelling, no pain or redness. I don’t think it is infected. The pea sized lump I felt a few days ago seems to be harder to feel but I think it is still there. The oozing is definitely not from a duct, it’s weeping all over the nipple skin.
I was so scared. I just put some hydrocortisone on it. A few hours later, it is still oozing. I have over a week before I would even get MRI results. How do you ladies do it? What did I do to deserve this? I am so frustrated and scared.
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Put in a call to your doctor's weekend number if it seems significantly worse than it was.
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I just emailed my BS. I am going to try to get an appt on Monday but I am not sure if they’d change their course of plan at this point, since my MRI is scheduled for Wednesday. I have described the oozing to her weeks ago and she refused to biopsy based on no skin changes that she could visibly see.
I am so so frustrated, crying my eyes out. This can’t be good.
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BS never emailed me back. I called this morning to try to get an appt with her. Ended up speaking with her NP only and she said she spoke with the Dr and she recommended to just complete my MRI on Wednesday. Didn’t even want to examine me.
The oozing is less but it’s still there, it seems more “oily”. The whole nipple area is puffy/swollen but not red or inflamed. Stinging sensation. I haven’t touched it so it not from me messing with the area. Everything just seems odd. I stopped the cortisone cream because I am afraid that it would affect the MRI results.
Getting anxious about the MRI, don’t know what to expect. I am a bit claustrophobic and hope I won’t have a panic attack inside the tube.I know a lot of the time, Pagets comes with DCIS or IDC. What are the chances that I have an invasive cancer under the nipple, and the mammo/us missed it a month ago?
One day at a time, almost there to the MRI…:(0 -
I had a panic attack this morning thinking about the upcoming MRI. Can the imaging place provide sedation for the procedure?
I called the imaging place a few times but no one answered.
Please, can someone help to calm my nerve? Will I feel claustrophobic? What about the contrast dye? What kind of feeling do you get when they inject you?
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I don’t think sedation is used for an MRI as the risks of sedation may outweigh any risks from this non-invasive procedure. However if you have someone to drive you, an Ativan or Xanax might do the trick. Eyeshades and music can help greatly and many places will try to accommodate you with music but bring your own eyeshades. The machine makes various kinds of loud noises that remind me of construction but nothing will touch or invade your body in any way. I had an MRI with contrast a very long time ago but don’t remember anything bothersome about it, sorry.
Sushifan, i have never had health anxiety so I won’t pretend to understand your feelings on an emotional level. An MRI is just loud, eyeshades will take care of any potential claustrophobia. The techs are usually great and speak to you throughout and you can speak to them. Really, all you have to do is lie still. If you meditate or do yoga breathing this will also be helpful. Get through this today and then get help for your health anxiety. You are an adult and as we age chances are more things will need to be tested or medically assessed, so it’s very much worth taking care of now. Not taking care of things due to health anxiety could just put you in a more difficult and serious situation than taking care of it. You can do this!
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thank you exbrnxgrl.
I did call my primary to get an RX of Xanax. My husband is driving me so I will take some Xanax. I am not sure if he will be allowed in the room.
I never realized how my bad my health anxiety is until these past few weeks. I cry literally everyday and am extremely anxious, I can barely eat or sleep. My mind goes to the worst case scenario and I don’t know how to help myself. I looked at my daughter and had so much emotions. I have never felt like this until the onset of this breast issue and i spiraled.
I reached out to many therapists and a lot have a wait list. I finally found an online one and had my first session last week, there was a lot of crying- I guess the severe anxiety was triggered by the PTSD I had when I gave birth to my micropreemie daughter but I “hid” it and internalized it for the past few years. I will keep going to weekly therapy, regardless of the results of this breast issue.
I waited weeks to get this MRI and I am so frightened. I get nauseous easily and no one really explained this contrast thing. I obviously googled it and some people had very bad experiences with the MRI and it just made me more anxious. The results can potentially turned my world upside down. Please pray for me.
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Would you be feeling this way if it was your elbow instead of your breast having skin issues? Try to think of it like that the next time your anxious mind jumps from 0 to a gazillion in one second.
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Thanks Alice. You always have very wise suggestions. I will try my best. I have tried very hard to convince myself there are benign reasons for my symptoms but I couldn’t come up with any. I do have a negative mammo/sono but I have read enough on this board that I know it doesn’t mean anything.
If I had a breast lump and they wanted to biopsy, I know the odds are that 80% of the time it’s benign. That’s a good odd. Unilateral nipple oozing/weeping serous discharge, flaky and with a possible lump beneath it, itchy and stinging sensation= only Pagets comes up and it matches every single listed symptom. The scary part is, Pagets always comes with underlying cancer.
My MRI will be over with tomorrow- then I will be anxiously waiting for results. Then I have to wait for a biopsy, more waiting for the results. I know a lot of you ladies have been through much much worse. And you are all so strong and I admire all your strength. How do you do it? How do you distract yourself and act normally when the potential outcome can be so scary?
I just don’t think I can be that strong, not anymore. But I will keep trying…Thank you got everyone who has listened and gave me advice.
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sushifan,
How do we do it? TBH, we have no choice! What I mean is, if we are dx’ed we simply do what we need to. No one likes it, no one looks forward to it but curling up hysterically is simply not an option. We are adults and bad things happen sometimes. We simply pull up our big girl panties and grit our teeth. My experience has been that almost all tests and procedures are not as bad as I imagined.
I have been stage IV for ten years. A bunch of stuff has happened that was scary but necessary. Had I not done those things I doubt I would still be here and that would be a shame because despite bc, many wonderful things have happened in that time. As is often said here on bco, you don’t have to be brave, you just have to show up. It may make you uncomfortable but you can do it.
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exbrnxgrl, thank you for your perspective. I feel so ashamed now- my fear/anxiety is nothing compared to what some of you have gone through. I hope you continue to stay well in your journey.
I will try to stay more positive. Hopefully there's a chance that I really just have a benign condition. If it's something bad, hopefully it's early stage and not invasive.
How long does it take for MRI results to come back? My BS never set up any follow up appt or discussed how I'd get my results. Being that I am getting the MRI on a Wednesday, chances are that they won't call me till next week. I am very worried that it will be uploaded to my online portal and I will try to interpret the findings and spiral over the weekend. I wish that DJmammo radiologist is still active.
Wish me luck, ladies.
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Sushi--I wish I had a magic wand to take all this away, but sadly I do not. I'll just say that most of us went through similar times and feelings; it's very hard and anxiety can go through the roof. Do not feel ashamed or apologize for your feelings; they are valid.
As far as how long it takes to get scan results... it varies and depends on your doctor, the facility, etc. I hope you don't have to wait too long.
Be kind to yourself and know that there are plenty of us here with you. I wish you the best possible outcome.
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sushifan,
I will share my secret with you. Though positive by nature, that’s not the thing that keeps me grounded. Perspective has been key for me. I try to keep everything in perspective. Once I learned to do this my stress level dropped significantly and I was able to enjoy life, breast cancer or not. I am shocked to find out that somehow I have become a 65 year old woman! Life really does go by quickly and none of us know what the future holds.
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Sushifan, you don't have to interpret the MRI results. The radiologist will have their report as part of the results sent to your portal.
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I got my MRI results.
They found a small enhancing nodule on that right periareolar. Focused ultrasound suggested for possible biopsy. It says 5-6 mm, it is deep to the nipple which might preclude MRI guided biopsy.
Freaking out and crying! Help please!
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What kind of help are you asking for? Honestly, you just have to follow through with whatever the medical people recommend at this point. If they recommend a biopsy, get a biopsy. We've all had biopsies. I had mine on a Wednesday, I believe, and on Thursday I went to a really fun concert (pre-Covid) and was bopping along to the music all night. Schedule something fun for afterwards, and try to do that with all your tests and appointments. I found it to be very helpful for my state of mind. And see that therapist which we've all recommended several times. By the way, I never cried. Not once. But I probably swore several times.
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Sushifan, how did you do in the MRI??? Did the Xanax help? Did you guys pick your daughter up from school or go to lunch afterwards?
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I did ok with the MRI. Scared but glad it was over with. Until I got the report on my portal.
I now need a biopsy quickly. But not sure when.
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The thing is, you did it! Yes, with help from your doctors and family, but you got through that just fine! You have support and need to use it for real, like now. The biopsy will be a blip in this process. But you owe it to yourself, husband and daughter to do something about this anxiety. Lots of people have anxiety, but health anxiety can interfere with your getting the appropriate treatment. You have got to understand that if this was your friend, you would never tell her to keep checking her skin or nipple to see if there’s still discharge, moisture, oil. You would never tell her the things you are saying to yourself right now. You would gently tell her to leave it alone to heal while the doctors did their thing. You would tell her it’s the busiest time of year for hospitals and imaging centers, so to try to be patient.You would maybe tell her to consider an antidepressant to help her get unstuck, and right away. BC is scary enough without this level of anxiety on top.
I don’t know you, but I will tell you I think having a high risk pregnancy, caring for a micropremie, and getting her to where she is now is not for dummies or wimps. I would think all the responsibilities and uncertainties you went through with that would be scarier than anything I ever went through. You didn’t get any guarantees the day you had her, and look at where you are today! Please make sure to get help so you can bear these days or weeks (even if they confirm BC, no one’s giving you insta surgery).
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sushifan,
I am going to say what alicebastable said. What kind of help do you need? The biopsy will be scheduled, and don’t be surprised if you need to wait a week or so, and then you will have some answers. I understand you have a great deal of anxiety but the freaking out and constant crying change nothing. They do one major thing, raise your stress level and stop you from looking at the situation rationally. If your crying jags and freak outs are beyond your control, please seek help ASAP!
I am very glad you got through the MRI. That’s a victory and with help, you should soon be able to deal with whatever comes from a position of strength. Remember, almost all of us have been through this, and worse. We weren’t happy and excited about any of it but in the best interest of our health, we did it. Take care.
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nothing. I don’t need help. I am just scared to death and feeling very helpless.
The breast surgeon called and said they will try to get me the focused ultrasound biopsy soon, not sure when . She said it can still be benign. She said it’s ok to feel the emotions I do.
What benign thing can it be for a small 5-6 mm nodule enhancement on an MRI periaerola? This is IDC or dcis. And I have Pagets with it. Except no one will listen.
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Sushifan,
"This is IDC or dcis. And I have Pagets with it. Except no one will listen."
Read that back to yourself until you realize how it really sounds. You are putting your anxiety-fueled imagination above the education and experience of every doctor and technician who has seen you, and you've come to the conclusion that you somehow know more than they do.
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I stopped crying and calmed down. I was angry and frustrated. I understand I have to go through “the process” to get diagnosed. But it’s exhausting to have to navigate everything on my own.
The MRI report says pretty much nothing. BIRAD 4. Suspicious. 5 -6 mm nodule enhancement deep in areola. Suggested “focused U/s” and biopsy. That’s it. I had an U/s less than a month ago, BIRAD 2, saw nothing. Why am I going back to another U/S? Why would they see it now? Why are we going in circles?
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Alice- I did repeat that to myself multiple times. It sounds so right to me. I have had Pagets symptoms for weeks, people including my BS tried to convince me it’s a skin/papilloma thing. She still did today saying it could be a papilloma from the MrI. A papilloma does not cause itchiness/stinging/peeling to one of your nipples but yes, she’s the professional and has the education. She saw me twice in the office for 15 min each and my nipple was well behaved both times (after topical cream). But I am the one who could feel the pain, the oozing and burning/stinging of it everyday. When I described to her, she said yes but that was not what I saw clinically.
Now the MRI found this 6 mm nodule deep in the nipple, was possibly what I felt a few weeks ago . Almost all Pagets comes with an underlying cancer, so this nodule enhancement is very likely be just that.
I am not a doctor. But I am a professional scientist at my job, I can read and understand scientific journal articles and understand most of it. Anxiety or not, the facts are pointing to Pagets with something else under. They both need to be biopsied. I think it’s crazy to try to find this “nodule” in ultrasound again. and biopsy it. There should be a wedge biopsy for the nipple skin done in the OR and also a core needle biopsy for this nodule found in the MRI, while the nipple is already cut open (or use U/s guided if needed).
I am calling the surgeon to discuss that tomorrow. I will also get a second opinion.
It’s not just an instinct. It’s based on facts.
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sushifan,
Of course it is ok to feel anxious and stressed about something like this. But I think our concern stems from the fact that your crying and hysteria seem to be impacting other parts of you life in a big way. I am not a doctor so I won't even hazard a guess on what it could be. None of us can and neither can you. I also don't know how you can say this is IDC or DCIS. Could you be right? Sure but you could be wrong. No one will listen? Your doctors seem to be moving forward so clearly they are listening! If you mean that they won't listen to your self dx, they shouldn't! That would be outside the standard of care (They can't take any action or formulate a tx plan based on self dx) and extremely unprofessional and possibly even malpractice. We are listening too, but we can't change your anxiety. Only you can do that. We have tried to comfort you and help you gain
I know you're scared but please try to put this in perspective. You are looking for answers but nothing definitive has been found so you will have to have a biopsy. Yes, it's frustrating to have to wait but you are moving towards an answer. If you do have cancer then you will deal with it but please deal with your health anxiety too as the anxiety you are expressing is very bad for your health.
** Just read your post above mine. Sounds as if you do have some professional expertise. I would have had no idea regarding the types of biopsies I needed!
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What are you worried about if it actually is Pagets and IDC/DCIS and THAT tiny a nodule? If the U/S/biopsy conclude its what you suspect, then what, they just cut it out, no? You would effectively be "done" with cancer in less than two months and not subject far longer or more intrusive treatments. That is about as easy a ride as anyone can hope for.
Look, I don't mean to be flippant, but everyone on here has gone through the same diagnostics emotional wash cycle of anger terror fear despair and acceptance. Some have had to accept more than others. But we all get there in the end and we all get treated in the end even though the wheels of diagnosis feel like they turn slowly. As a professional with a science background you should know that you can hypothesize an outcome based on observations, but it then needs to be tested to achieve resolution. Which is what the doctors are doing through an established process.
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A lot have happened in the past 2 days. My wonderful surgeon had arranged for my US/biopsy within 24 hrs of the MRI. Went to the US, radiologist said the “suspicious nodule enhancement” on the MRI is just a complicated cyst, no need to biopsy. MRI or US didn’t have any other finding.
I have done all the imaging possible but no results could explain the “Pagets symptoms” that was on and off. My nipple is currently “normal”. The BS originally scheduled a wedge biopsy but due to all the emotional stress and anxiety I had with the MRI and based on her evaluation from all the imaging results. She felt safe for me to follow up instead of going straight to a biopsy, which I am at peace with and trust her decision. I believe if she thinks if it’s emergent, a biopsy would have been done. I am now giving my mind some rests. I will continue with my therapy for the anxiety.
Thanks for all who have responded- esp the ones sending me very comforting and supportive private messages. I admire all of your strengths. I will post update if there is any (hopefully not).0 -
Update- I have decided to ask for that biopsy. They will schedule it.
After calming down for a few days from the MRI emotional roller coaster, I feel that the only thing that will really settle my anxiety and for me to move on is to seek the definitive diagnosis or to rule out Pagets. And only a biopsy can give me that. I don’t want to live in fear wondering the what if’s and I want to take care of it sooner if it’s cancer.
I am not sure if I can wait 3 months to recheck and hope that the symptoms don’t come back sooner. I felt some itchiness and tingling today. It’s just not normal compared to 3 months ago.
Any thoughts or advice is appreciated. I know what I am going through is nothing compared to what you guys have been through.
I just hope and pray that this instinct i have all along is so so wrong. Let’s hope they schedule the biopsy soon!
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Sushifan756, actually the angst you are going thru is not nothing....... it really isn't, we've all been there. I just hope you can get that biopsy, you need to, both physically and mentally. If it's the undesirable outcome, this page will be here for you. I myself, worried that I may have IBC after noticing 2 bruised red spots on my radiated breast a week ago... it has faded, so now I feel ok again.......but the anxiety is always horrible. I get it. Hugs.
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