My whole body feels scared - possible findings, biopsy and axillary aspiration
I was nervous just coming up on five years, and then my sonogram was inconclusive which caused days of fear, and then the second reading found a mass just by my nipple (on the good side) and enlarged lymph nodes (on my surgery side). Now I need a biopsy and an axillary aspiration and the soonest appointment is next Monday. It already feels like it's been forever.
The doctor who did the second sonogram said that it's definitely possible that everything is fine and can be explained by other things (cyst on the good side, not exactly sure what on the lymph nodes, I haven't had my new vaccines yet), but he wants to be careful.
It's birads 4, which at least is better than the birads 5 I had the first time around.
This is from the report:
FINDINGS: Left breast 6:00 axis, retroareolar region, hypoechoic irregular mass measuring 0.9 x 0.8 x 0.6 cm, likely intraductal, for which ultrasound-guided biopsy is recommended. In the right axilla 10:00 axis, 13-14 cm from nipple, there are 2 abnormal lymph nodes with cortical thickening measuring 0.8 x 0.4 x 0.8 cm and 0.7 x 0.6 x 0.6 cm. Ultrasound-guided fine-needle aspiration of a representative node is recommended. Flow cytometry should also be considered.
Intellectually I understand there's a decent chance everything is fine, but I feel like my whole body is tense and terrified, I keep banging into things, not sleeping much, and UGH I hate this so much.
Signing in here for venting and chatting and maybe some support or wisdom.
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Salamandra, I’m so sorry you are going through that. I get it, I understand the fear. I had suspicious thyroid nodules they biopsied benign. I had a lump in April. It was just fat necrosis from my fat grafting over a year before. Now I have new pains in my cancer breast. The fear never ends. I hope it is nothing. It sounds like they are being cautious. When it’s bad they usually know even before the biopsy. I was told first time “not going to lie it looks strange “ this last time “ probably fat necrosis just want to make sure”.
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Thank you!!
I feel like this time it was really in between 'looks bad', and 'probaby fine, just being cautious' (which I had before an MRI biopsy a few years ago. The vibe I got is, 'looks like it could be cancer, but there are also other plausible explanations'.
I'm so glad your nodules were benign!
It's funny, I've written reassuring messages on these boards so often, but it's like none of them got into my own brain! I really do need to hear from the outside. Thank you!
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@salamandra I am sorry that you are going through this now. I hope and pray that it is benign. Sending positive vibes to you.
I am new to this journey but I am reading a lot of these scenarios where most of the times these kind of situations turn out to be benign and the doctors being extra cautious.1 -
Hello @salamandra. I’ve read some of your posts throughout this forum and you are very encouraging and helpful to us all. I appreciate you honestly expressing what you are going through and your fears. Thank you. A benign outcome would be wonderful for you. I want that for you!!
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@salamandra You were one of the first people to respond to me when I was diagnosed. I remember you calming my nerves with the kind, rational, well thought out post you made. I am thinking of you and hoping that this is nothing.
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Thank you all so much. It's jarring how vast the divide between my conscious thinking and my physiological response can be. I really really appreciate the kind words and support!
@jh40 <3 Thank you for sharing that, it feels nice, and for the good wishes. It looks like you're still in active therapy - I hope that's going as well and smooth as possible!
@needs.a.nap I really appreciate that, and thank you!
@ichan I keep trying to tell myself too, but it still is helpful to hear it from the outside! TY.
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Salamandra, I am so sorry you are going through this! It is sometimes hard to calm our thoughts but that is to be expected after what you have been through. As you know it is ok to feel that anxiety and fear and you have to give yourself space for that. Hoping you can find some decent distractions while waiting. I am sending you all the good vibes and wish for you to find answers quickly. I wish I had more wisdom to impart but just wanted to say I am thinking of you. I also have always appreciated your responses to posts I have made.
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Salamandra, saw your post on the radiation thread and came over to see what was going on. I’m so sorry you are going through this and am sending all thoughts, vibes and prayers that it will turn out to be nothing but an abundance of caution.
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With the help of ativan and a lot of Pokemon Go walks I made it to my procedures today. They were not fun (the axillary lymph node aspiration in particular was very deep), but it was a team of two excellent women doctors that helped me feel in very good hands. It also sounds like the doc was really not suspicious of the lymph nodes, a hope I am holding on to!
Now 2-7 business days for all the results… I checked in with my pdoc and he is ok with me going heavy on the ativan until results are in.
I got a bit teary on the table, missing/wanting my mom. That never goes away, does it? She's been gone for almost 25 years. But I made it through and I am proud of that.
Thank you so much to you all. <3 <3
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We're thinking of you, @salamandra, and we're hoping for the best possible results from your biopsy! Please rest as much as you can (with the exception of your Pokemon Go walks, which we're sure bring you much needed joy!).
The Mods
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@salamandra I have been thinking about you and was looking for an update. I hope and pray they are benign. Sending hugs to you and positive vibes.
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Thank you for sharing. I always read and identify with so many of the messages. I finished active in mid june. Still getting checked myself on this and that, but you are about self care. Letting your sisters here know fear creeps in, but tell someone and bring it to the table. I will pray for benign and peace.
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Thinking of you, salamandra. You were so supportive of me when I was going through hell on hormonal meds. Wishing you good health. Please keep us informed, we're rooting for you. hugs
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Hi again, and thank you each and all. It's been good for my heart.
So, it looks like the axillary nodes are not alarming - they biopsied the area and it's not even lymph notes, but they want to scan again in 6 months.
Unfortunately, the mass on the left - contralateral, my last tumor was on the right - is cancer. Goddamnit.
I found out Thursday and couldn't even face writng this until now.
There's some good news. This seems to be a new local occurrence and they're not treating it as a metastasis. I'm following the same sequence as last time, starting with a surgeon. It's also ER+/PR+/HER-, which I think means I have a chance to escape chemo again. I'll be able to have the same surgeon as last time, whom I really liked. I'm waiting for an appointment now.
Unknowns that are nagging at me include whether I'll have to give up the toremifene and try a different hormonal drug, which I am not looking forward to after how hard it was the first time; whether I'll have to give up my breasts and get a mastectomy, which would really suck as I feel like my body image in the last couple of years has been about as healthy and positive as it's every been in my life; whether I'll be emotionally able to juggle work and treatment - last time I took unpaid leave for radiation which was really good for my mental health, but not great for my wallet - my savings are much lower now and my new school is much easier, but it still feels really stressful to think about juggling; whether I'll be able to go on my scheduled scuba diving trip in February, which I really hope yes because lately there is nothing I love more than diving.
Feelings that are bugging me now is angry self-pity that my peers seem to have weddings, babies, and houses, and I seem to get cancer.
I've told my family and my closest friends and my work supervisor (I was in a work meeting when the biopsy report came in) and that's about it. And now you all.
Even though I was putting off writing here, I'm glad I have, I think writing this is helping.
I hope the surgical consultation can be scheduled soon since I remember feeling a lot better after that last time, and I hope it can be the same this time.
I've been leaning pretty heavily on ativan and it's been helping, but I think tomorrow I will call my psych and ask for something I can plan to take longer term, at least until the oncotype results come in. It is so weird going through this already having an idea of what's coming.
In many ways it isn't as bad as last time, because it's fewer unknowns, and I know and love my medical team, and my oncologist was so on it and called me like three times and was so kind and supportive. I remember last time bicycling across Brooklyn to get the biopsy report and then having to figure out who to fed ex it to and then waiting for a call.
I kind of really wish I had a partner now.
I found out Thursday afternoon. I took Friday off work and played lots of phone tag and walked more than 10 miles, including with my shoes off on Brighton Beach, feeling the tide and hearing the ocean, and playing Pokemon Go.
I've been pretty inward focused and I'm anxious about being surrounded by colleagues and students and lots of other people's needs and feelings tomorrow, but hopefully it will be a good distraction.
Thanks again to all of you. I'm glad I could be supportive of many of you, and I really appreciate that you've been posting here for me.
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Salamandra, I’m so sorry about your biopsy result. A new local recurrence is the lesser of two evils but it seems unfair to have to go through everything again. Being familiar with the process is both positive and negative. At least you have a medical team you trust in place. Once again it is your turn to be supported. Hugs for you.
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Salamandra - I’m so sorry. This sucks. Please lean on us as needed. (((Hugs)))
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I’m thinking of you @salamandra. I’m sorry! It’s so unfair! I really hoped it would be nothing serious. Thank you for letting us in on all you are going through … it’s a unique vulnerability and I think we all understand it. We are here for you!
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We are so sorry you got this unwelcome news, @salamandra. Please know that you are in our thoughts, and we are all here to support you. We're sending you warm virtual hugs 💕
The Mods
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Oh, Salamandra, I am so so so sorry! This is totally unfair. You've been on my mind so much and will continue to be.
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@salamandra I am so sorry that you have to go through this again. This sucks. We all are here for you. Virtual hugs to you.
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Oh crap! @salamandra I'm so sorry to hear you're going down this road again. I'm very hopeful that it's another low oncotype tumor and you can avoid chemotherapy again. Glad you found it early, and that you are past the waiting for pathology.
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salamandra,
I’m thinking if you ❤️🩹
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I have been thinking of you and I am so sorry to read that you are going through this again. It truly sucks and I hate it for you.
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I finally have a confirmed surgical oncology appointment for Tuesday evening. It's with my prior surgeon, which I'm relieved about. I think I've been doing a fairly good job not getting ahead of myself and maintaining some pragmatic optimism. Another piece of promising news that came in is that my MRI last weekend didn't show any other areas of concern.
I've come way down on the ativan, but I'm thinking of asking my psychiatrist for a medical marijuana prescription next time I see him. Or my oncologist? I'm not really sure who would be best to ask. I've never really been a marijuana user, so this would be new territory for me.
Last time around, I announced on Facebook basically right away and told everybody. It was what I needed then, I got so much support and love. This time, I've only told a handful of people - family, close friends, and work and work-adjacent stuff that will likely be impacted by the treatment. There are some more I know I'll tell once I have a plan. I'm not sure why I'm feeling so differently this time. I think part of me doesn't want to push it on the sympathy/support thing and risk burning people out, but also I think maybe I just feel like I don't quite need that now. I'm definitely more able to compartmentalize and go about my life and not be thinking about it constantly, so that's good. But I also feel like I just aged a decade in a few weeks. I think my hair got more white in it even. It's very strange.
Thank you Dani, ExBrnxGrl, SarahMaude, ichan, PurpleCat, needs.a.nap, harley07, maggie15, katg, jh40, orangeflower, jrnj, mods, each and every one of you. This thread continues to be heartening for me, and I am coming back and re-reading it.
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salamandra,
On the cannabis issue, each state and sometimes even each city or county has its own procedures for obtaining medical cannabis. In CA, specifically Santa Clara County, there are designated doctors who do assessments for a medical cannabis card. These doctors charge a fee and the county charges a fee for the card as well. None of this is covered by insurance. There is no prescription written as pharmacies in CA , nor any state as far as I know, do not dispense cannabis and it is illegal on a federal level. As far as I know in CA as well as other states, only licensed dispensaries sell cannabis. Since CA also allows adult recreational use* many former medical card holders have simply given up their medical cards because adult use purchases satisfies their needs. Again, laws vary by state so check your state’s requirements and let me know if you have any questions.
*In CA a medical card allows you to buy a larger daily quantity of products, avoid some taxes and buy products with higher levels of THC.
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Salamandra, I'm sorry you are going through this. Your optimism is what will help you get through and it's inspirational. The only thing we can do is keep going because as you probably know very well how easy it is to go down a rabbit hole.
Hoping that everything goes well. <3
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salamandra, so sorry to hear the results, but glad its small and a new primary instead of recurrence. I remember having a mental breakdown for 3 months until I had a plan. Also glad you feel you are in good hands. I never felt that way. I wanted to go to Sloan, I am near Middletown, but didn’t want to go to city for surgeries so I stayed in central jersey with Hackensack. I am married but on paper only so no support. I wish I could come visit and give you a hug. Also I hear you about the meds. I’m on letrozole and live every day in misery, tired and in pain throughout my body. But I am afraid to do anything less. I did get a double mastectomy. While not the surgical results I hoped for, no regrets, I look ok in clothes and a highly padded bra, lol. And I got the C-section shelf cut off. Some lemonade out of lemons. What type of cancer do you have, idc or ILC?
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@salamandra I came back to check in here and I’m devastated to see that you’re dealing with a 2nd diagnosis. I’m truly upset. Just awful. I hope you’re getting the best care possible. You’re in my thoughts.
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My update is that I saw my surgeon earlier this week. It's the same surgeon as last time and it felt good how she clearly remembered my case and me well, and cared a lot.
The actual appointment felt like a groundshog day of the last time around. Except for being in a different place in the breast, it seems to be mostly the same.
I was hoping this one would be smaller, like under an inch, but if it's the same as last time, it will still be under two inches.
The good news was that she confirmed that it was ductal cancer even if it had lobular features, and that didn't change things, and that she would recommend a lumpectomy again. She believes she can get good cosmetic outcomes and most likely have no issue with or even scarring on my nipple, which is a relief too since the tumor is literally right there behind it.
She did say I needed another sentinel node biopsy since the new protocols exploring skipping it are only being tested in post menopausal women now. I'm not looking forward to having two wonky arms. I don't have lymphedema and I don't want it, but I do have regular discomfort and weirdness. She said that it's totally possible for one side to be easier than the other for that too, but she can send me for preventative physical therapy too.
Same as last time too, in terms of needing to wait for the lymph node pathology and, if they are clear, an oncotype, before knowing whether I'll need chemo.
She was also able to get me in for the surgery this coming Friday, which I am so relieved about. I had my pre-anesthesia consult yesterday. It's very funny to hear about how healthy all your stats seem, except for that one little thing…
My big decision now is whether to take up the offer of one of my family members who said they would come stay with me, or not.
My apartment is so tiny, last time, I just remember wanting my space all to myself. If everything goes well, I think I'd prefer not to have someone staying there and just to have local friends come by. But if something doesn't go well, it would be nice if they were there already. I'm leaning towards no, but I really need to let them know today if possible.
Thanks again to all of you. Coming back and reading your posts and writing out my stuff here just feels like it takes part of the load off, and I appreciate it a lot.
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Thanks for the update salamandra. It's overwhelming to be going through a second diagnosis but I hope you find some relief now that you don't need a mastectomy and the ball is rolling toward treatment. I hope you don't need chemo. Have you given any thought to whether you want to stay on toremifene or try OS+AI?
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