Topic: Beginning?

Forum: Not Diagnosed But Worried — For those who are experiencing symptoms or received concerning test results, but haven't been diagnosed with breast cancer.

Posted on: Nov 14, 2022 04:20AM

Posted on: Nov 14, 2022 04:20AM

starsnow77 wrote:

Hi all....I never thought I would try to conenct in with a community like this... but I am finding I could use some back up as far as my thoughts/reactions/scaredness. Is it normal?

Mammorgram caused some discharge...and it has continued randomly since then. sometimes months without anything then YUCK. Grosses me out completely.

I mentioned this to my GYN (I am older, no kids, married) and she referred me to a breast surgeon and off we go. MRI (the most undignified position I have ever been in) and then follow up ultrasound . small spots of concern..and a problematic milkduct

The radiologist who assisted in the ultrasound threw me. For someone who might be beginning a journey and be afraid (I am not worried but my mind flexes between scared ***less and all is well) her attitude and lack of compassion made me feel so insignificant.

But I found a few words on a forum in the UK and I realized that others are going through this.

I have a biopsy and excision scheduled for the 18th.

I am disliking where my mind goes at times, I dislike that this is a boob.I mean..I don't want a bunch of people looking at my boob... make it my foot or elbow or someother place.

And truthfully, if someone can understand...I am scared.

there's a whole lot that goes with this...other health issues, a profound hearing loss. lack of support...not sure where to turn and don't want to discuss this with others...it's probably nothing but why am I scared of nothing?

Just want to connect.....I need an anchor.....thanks for reading

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Nov 14, 2022 05:25AM - edited Nov 14, 2022 05:27AM by jh40

starsnow77 - I remember feeling a similar way in the beginning of my diagnosis: like I was going to be shoved on a conveyor belt and moved down the line. It has gotten much better for me but my first impressions weren't great.

There are many stories, unfortunately, that I've heard from others where negligence and lack of empathy were at the forefront of the diagnostic process. It's very disheartening, especially during such a terrifying time for women in this position.

You are not insignificant and you deserve to be treated with dignity and respect. All of us do! Many people in the medical field are so conditioned and they come across as insensitive because they see this stuff all the time. It's no excuse, just a bit of perspective.

You're right in that it's most likely nothing, but it's of course scary. You've got every right to be afraid. Regardless of if it's something or nothing though, there's one piece of advice that many of us share, and it's that you must be your own strongest advocate. This forum is awonderful source of connection and information. I've been able to advocate for myself in many ways through my own process because of the help and advice from the women on here.

I hope all the best for you.

Surgery 6/16/2022 Mastectomy (Right): Simple Targeted Therapy 8/1/2022 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.trazimera Chemotherapy 8/15/2022 Taxol (paclitaxel) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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Nov 14, 2022 05:57AM starsnow77 wrote:

Thank you so very much. It's truly a flux as to feelings. Don't be ridiculous vs Oh No. When the radiologist did the utlra sound she could not find the area of concern. so she said I would have to do an MRI biopsy, but if they could not do it then they'd just watch. The more I thought about it, the madder I got.....I was not putting myself through that again for a maybe. It's expensive and invasive. Luckily I found "some strength" and I have a wonderful surgeon..I was able to say "what are my other choices because I am not doing that". The duct has to be removed anyway, so........

Thank you so very much. I dislike having an attitude but I guess we do need to stand strong when it comes to this. I know those in the medical field can forget there is a person, not just a diagnosis.

Thank you for connecting. This is what I need right now. To know I am not alone

Smiles amy

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Nov 14, 2022 06:40AM purplecat wrote:

Hi Starsnow, you're definitely not alone. I'm in the middle of a similar thing, awaiting a biopsy tomorrow for 2 spots that showed up on my MRI near my lumpectomy site. I had a biopsy in May that turned out to be scar tissue, and this seems reasonably likely to be more of the same (that's the "no big deal" part) but then there's the "scared ****-less" reptile brain that has me convinced of the worst possible outcome . I think it's great you're just having it removed without any more messing around waiting. Who has time for this … stuff?

It's totally normal to be scared. This is scary stuff. Cancer kills people, and in these moments it doesn't matter that cancer kills a LOT less people than it used to, or if the likelihood that what we have is cancer is small, or if the cancer we may have is unlikely to kill us. It's like trying to sleep in a room where you think you saw a bat fly in. You may have imagined it,or it may have flown back out, or it might not have rabies, or it might be about to die, or it might not be a bat at all but a large butterfly. Doesn't matter. Most people will be unable to get any sleep in that room until they know for certain there’s no bat in there.

And I’ve often thought the same: it wouldn’t be so bad if it were a foot or a knee or something easily accessible/requiring no special modesty, but boobs are a whole different matter. And it takes sooooooo long to investigate stuff, because it’s not like a skin thing, where a doctor can take one look and ay “Oh,that’s a freckle.” There’s always imaging involving nudity and squeezing, and then more imaging, and then a biopsy involving needles and more squeezing, and by the time you get to “oh, that’s a freckle” you’re on the edge of a nervous breakdown.

Hang in there, and post as often as you need to. The forum is a little quiet lately, but everyone here understands what this is like


Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal Surgery Hormonal Therapy Femara (letrozole) Radiation Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 14, 2022 10:32AM moderators wrote:

Indeed, you are definitely NOT alone, as you will see on the boards here. We're really sorry you're going through this, but glad you found our community! Medicating Your feelings are very normal. and it IS a pity that some people just lack the warm, empathic bedside manner. We're all here for you.

To send a PM to the Mods: community.breastcancer.org/my/...
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Nov 14, 2022 11:44PM starsnow77 wrote:

Thank you all...I am trying to numb out, just not think . I have my anchor line here..thank you so much...and there is not much I can do to change any of this.....so...

I don't want anyone to know..yet find I do need to say something. (esp with someone I am helping out in her shop for the Holidays) This limbo stuff is tough. The unknown haunts. But onward..right?

Pre op Tuesday. surgery Friday. I've got this I think

HUGS

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Nov 16, 2022 03:26PM parakeetsrule wrote:

If it helps, to a doctor or a nurse who works in breast health, a boob IS just like a knee or an elbow. At first I was a little shy but after it seemed like the entire hospital had seen or poked my boobs, I stopped caring. It's just another body part!
Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Radiation Therapy 11/6/2017 Whole breast: Lymph nodes, Chest wall Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Chemotherapy AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left)
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Nov 20, 2022 08:04AM starsnow77 wrote:

I am so grateful for the support and connection of this group. I was very nervous, but had an awesome nurse who had gone through a vvery similar surgery, so she completely understood. everyone was nice, patient and helpful.

The dr was able to find and remove the "bad" duct...and the biopsy is out to the lab. I don't know when I will get the results but I feel it will be fine. And if its not, I know I have a good system in pace and feel very comfortable with that. And I have support!

The suggestion about a wireless sports type bra was so helpful, esp. with swelling. And I have a small pillow that I have been using for support.

I guess the pain surprises me.....but considering they had to "hunt" a bit I guess that's ok. I don't have restrictions per se, but am having a slower day...much movement does hurt. (I'm 40D, and after they explained that soft tissue movement can cause more pain, it makes sense)

Thank you everyone for being there and understanding

Wishing you all comfort, and the best of luck


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