A Year Later: Through Grief a New Fear

Angel1109

Hi all! I'm new here. It's quite strange. I encouraged my mom to join this page so many times. My mom passed of stage 4 breast cancer last June. I'm still swimming in grief. My chronically ill sister and myself, also chronically ill (with Ehlers-Danlos Syndrome, Dysautonomia, Mitochondrial Disease, etc), were her caregivers. My mom was also my closest friend, second only to my sister. It was a long, hard battle she had with the breast cancer. She put off mammograms for 8 years, which may have led to being diagnosed right at stage 4. Anyway, now just over a year later I (at 38 years old) began having left armpit pain. I assumed it was just a muscle or swollen lymph nodes from my Mast Cell Disorder. My sister encouraged me to say something to my PCP when it persisted for about a month. So, my PCP ordered a diagnostic mammogram. I didn't get the mammogram until another 3 weeks later because my just about 15yo daughter is also chronically ill with these same illnesses as my sister, myself and my niece and my daughter also has IBD that has yet to go into remission and my daughter has some significant mental health issues so I have usually 3 days of appts for her a week. I'm on Disability and unable to drive so I waited until it was easier to fit the mammogram into the schedule.

Well, to my surprise they found a small solid mass in the right breast and enlarged lymph nodes in both armpits they say are highly suspicious. Now they want me to have a stereotactic biopsy of the mass and lymph nodes in both armpits. Needles to say, I'm terrified. I can't believe this is happening. It's been a lot of back and forth trying to communicate with my PCP. Honestly, I think she's having a hard time bc she was also my Mom's Dr. But I need her to communicate with me and move faster on getting this referral in so I can set up the biopsies.

Can someone tell me what to expect of the stereotactic biopsies? I feel so alone right now.

hoppypoprocks

I had a sterotactic biopsy on the 15th, so everything is still pretty fresh in my mind. After the nurse called me back, I changed into a gown (I got to keep my pants on, so wear comfy pants!) and she took me into the biopsy room. She and a tech helped me get up onto the table and they had me put my breast through the hole. They started positioning it in the mammogram machine and I did not realize that this was the last time I had to move until it was over, so make sure you are as comfortable as possible before they start that part. They took some images, adjusted my breast, took some images, adjusted my breast, and then we were ready. The radiologist came in and checked positioning then started injecting the local anesthetic. Because I am allergic to most things that end in -caine, this part was super nerve-wracking. I started having a local reaction but luckily it never escalated to anaphylaxis, so we were good to go. Once I was good and numb, the radiologist warned me that I would hear a sound like a champagne cork popping. I heard that sound and before I knew it, the biopsy was done. The nurse had been by my side the entire time, talking to me and rubbing my back, and at this point she went down below the table and put compression on the biopsy site for about 5 minutes. Once I was done bleeding, she put steri strips over it and covered those with a gauze dressing. She gave me an ice pack to wear in my bra and I was okay to go as soon as I had changed back into my shirt. It was not my favorite experience, but it was not as terrible as I had amped it up to be in my head. If you are super anxious about it, ask your doctor about an anxiety medication for before. It probably would have helped me be more okay with staying that still for so long.

I'm so sorry about your mom. I hope your results are b9.

Moderators

Dear Angel1109,

We are so sorry for all you have been through. It sounds like you received good information from our community. Please keep us posted and let us know how things go for you. The Mods

Puzzlewoman

I had the same experience with my biopsy. It really helped me to have someone there with me. My cousin met me there, and she’s someone who is also a friend. She wasn’t allowed in the room, but she was waiting for me and was with me when I met the nurse afterwards. I have also found wonderful people here to talk to. 😊

Angel1109

Hoppypoprocks,

Thank you so much for describing the process! That helps. I'm nervous about the positioning and being still part because of the Ehlers-Danlos Syndrome...I can have joint subluxations or dislocations easily as well as muscle spasms. I'm sorry to hear you had a reaction to the anesthetic. I can empathize. Thankfully it didn't progress to anaphylaxis! That's horrible. I am praying for you. I'm sorry you have to go through all this.

Angel1109

Puzzlewoman,

I'm glad you could have your cousin there for support. That def helped I'm sure. I'm so sorry you have been through this. I'll keep you in prayer.

Puzzlewoman

Angel1109, that’s so nice of you. Sorry you have to go through this too

Polly413

Angel - I second the advice to ask for an anti anxiety pill. I took Xanax -- just one pill an hour before the biopsy and was so relaxed it was hard not to go to sleep. The procedure described above is very close to what I experienced. I did have a robe for privacy and warmth as well as my slacks on. No pain at all and, as I am deaf, I did not hear any sounds either. But I was allowed to have my husband in the room as there was no way for me to lip read the doctor (my breast surgeon - a woman -- did my biopsy so I was very comfortable with her) who sat under the table on one side and my head was turned the other way. It went very well. Surgeon put in a clip during the biopsy and I remember walking down the hall supported by a nurse because I was so relaxed and a mammogram was done just like a regular mammogram. Don't remember now why this was done as of course the biopsy was guided by mammography. Polly

Angel1109

Polly,

Thank you! An antianxiety med may be helpful. I do have Valium prescribed that I never take. I could take one that day. I'm glad the med was able to be so helpful for you.

Angel1109

This whole process has seemed like a run-around nightmare! I am so frustrated! Now the hospital radiologist is saying they aren't doing a biopsy they want to do another mammagram and ultrasound. They think because of my age the wait and see (just look at another mammogram in 6 months) approach will be fine. Believe me, I want more than anything not to have breast cancer but I don't want to be dismissed if there's a chance it's something. I'm just worried because my armpits have really been hurting and at times I'm losing feeling in my right arm. Something is wrong! Hopefully, it's not BC but it's something. I just hope one of these doctors will listen.