I just don’t know

all_done84 · November 2017

Hello

I've been reading different posts on this forum for some time now. They've all been so helpful and I've come to realize that all of you are wonderful people. I wasn't planning on posting but today I got upset and felt alone and needed to get it off my chest.

I'm not sure where to even start with my first post...

I'm 33 years old, married and a mother of 2 (7 and 13). There's history of BC on my maternal side of the family.

A little of my back story, I've noticed I've some differences in the past year and a half. My doctor didn't seem concerned, so neither was I. About eight months ago my right side started swelling and felt like there was a 'knot' in it (on the outside). Like you'd get in your back when it's sore. Again, the doctor was concerned. By the beginning of summer I had to buy a few new bras because I wasn't fitting into my bra, but only in the one side. Also found another 'knot' but this one is under the nipple. My doctor told me that our bodies are always changing and not to concern myself again.

Things started changing at the end of September. My right breast started to feel tender, is now sore. I started getting a 'let down' sensation on that side too. About a week ago I was trying to massage it to see if it would “loosen" up a little. After only a short while I had discharge come out. I haven't nursed since my youngest was 1.5 yrs old. It was clear, then a little milky. I wasn't to nervous but thought I should make another appointment.

I was able to get in Monday but this time I wasn't able to see my regular doctor, but was lucky and got to see another female. She felt both sides and said she found a few small lumps on my left (I was never worried about that side) and that my right was VERY lumpy. She asked when my last mammogram was, I've never had one, and she was floored to find out I've never been since BC is in my family and I've been having changes for over a year. So she booked me in for a mammogram ASAP. I went for it this morning and it wasn't as bad as I thought it would be. The tech was amazing and so kind. After the scans were done she left to get the radiologist to make sure they were good. He asked for extra on my left side, she said they do that sometimes to make sure they are clear enough to properly examine. After he saw those he said they were good and I could go but to call my doctor when I got to home and book an appointment for my doctor and I to go over my results. He said she should have them by tomorrow or Friday at the latest.

WHEN I called my doctor her receptionist made me so upset. She got mad at ME saying they call if there's an issue. That the radiologist never should have told me to call. I told her I wasn't sure but if I could book an appointment for Friday either way. Fingers crossed my scans are clear but I'd still like to talk about my right side that's larger and sore (maybe an infection or something). Either way, why would she get so upset and give me crap for calling? I was just doing was he said.

Anyhow, that's my story. I haven't told many people, those who I have have been okay about it. My husband doesn't seem worried and hasn't talked with me much about it, even if I’ve wanted too. But I get people deal differently, but it’s still be nice to talk. I’ve been very calm till the pain got worse and finding more lumps I didn't even know I had. I hate waiting and I hate that the receptionist was so angry and mean. I just don't get that. She knows why I went and that a women would be stressed about this. So if I want an appointment, I should get one. No?

I've very much enjoyed reading all the articles and supportive posts on this forum. So even though you don't know, you've all already helped me so much

Xoxoxoxox

Cheers

cive · November 2017

Don't let your doctor's receptionist's bad day take up anymore of your energy. It probably wasn't anything to do with you personally, it's just that she has a job to do and likely has been told not to make an appointment before they've actually received your results. You know how stuff can get lost.

Do let us know what your (good ) results are when you receive them

all_done84 · November 2017

For sure! And thank you

I got a call today that my doctor received my scans and would like to set up an appointment with me. So I’m booked in for next Tuesday.

all_done84 · November 2017

Feeling nervous now. Still trying tonot freak out though.

My doctor just called asking me why I wasn't booked in to see her today? That it shows her receptionist called me yesterday to get me to come in to discuss my scans.

I told her my appt is on Tuesday and that I was told she was all booked for today. She got quite upset and apologized to me over and over. She said when she requests a patient to come in she means straight away. She was very sweet about it and told me to relax and we will discuss everything at my appointment.

It was just shocking to have her actually call.

CheyenneB · November 2017

I'm 33, discovered a lump 4.5 years ago. Finally had someone take me seriously and had a mammogram and ultrasound done last Tuesday, followed by a biopsy last Friday. They said its cancer or a radial scar. I will have my results tomorrow. I know how worrisome and stressful this is. It sounds like we'll both find out what's going on tomorrow. I wish you the best tomorrow. *hugs

all_done84 · November 2017

Hi chetenneB, I am hoping for b9 results for you tomorrow. It’s so scary waiting and what your brain does to you during that time. I’ve had a very long weekend. I cannot believe they said those words to you.... cancer OR a radial scar??? What a horrible way to say things. I’m so sorry.

Im pretty nervous about tomorrow. Regardless of what was found, or not found, I am going to ask for an US to make sure we are looking at everything. this forum is amazing and I’ve learnt that you need to be your own advocate for your health and that doing more screening tests such as amammogram and us are good.

MTwoman · November 2017

Cheyenne and all_done, when they told Cheyenne "radial scar or bc" it was most likely because of certain characteristics that are typical of bc, but are also shared by radial scar. It isn't really helpful for trained and experienced medical staff to withhold information, as we can get ourselves better prepared when we are given a "heads up". Bringing someone with us to take notes (most of us find it very hard to concentrate after hearing the words bc) if we need - or celebrate with us if that is called for; as well as a list of good questions (in either case). They seemed to be trying to give her their best understanding of what diagnosis she could be getting soon. Not sure there is a GOOD way to say that. I do know that not having any idea, and being shocked the first time bc even enters your mind in any real way, is horrible.

all_done84 · November 2017

Thanks MTwoman, that makes a lot of sense.

I hope your appointment went well Cheyenne.

I had my appointment yesterday. My doctor originally ordered for me to go for an ultrasound but when I got to the radiologist they did a mammogram instead. So my appointment yesterday was basically that of my doctor being mad that they didn't listen to her. All my mammogram showed was that I have density of above 75%, suggest of repeat in 6 mths. My doctor said that with my age, and even more so now knowing my density, I shouldn't have even hadn't a mammogram yet. Nor should I in 6 months. So she rewrote the report to the radiologist and circled 'ultrasound' about 10 times. Then said, “you think I'm making myself clear THIS time". She redid the breast exam and marked off area s on the report for the ultrasound tech to look a little closer. It doesn't look like i can get in till next week for that. But she suggested me to call in and ask to be put on the cancellation list.

During all this I found out my grandmother had breast cancer in her 40s, we know nothing more before her as she was adopted. And my mother is currently also going through the same thing as me. And we have the same doctor, so it was suggested that I maybe try to do genetic testing. I don't know about that though

Mrs_Beasley · November 2017

Hello everyone, I am new too. I joined recently because I am floored by the compassion and knowledge of this group and find the emotional support I have received by simply reading here just wonderful for me and I'd like to give some of that support back somehow.

I also want to share my story for those who are waiting test results. This summer I had 4 biopsies. The waiting is the WORST EVER and I get that. Keep your mind busy. Go back to work, continue your hobbies, do not put your life on hold while you wait and let fear and sorrow set in like I did. I learned this on the last biopsy but wished I knew this on the first.

More than anything, please press your Dr. to order you a breast MRI. My mammograms over the past few years were ALL normal. Completely normal. I was advised to ask for a breast MRI after my sisters Stage 1 diagnosis. I was given a prescription for one and was told it was a good idea to establish a baseline MRI rea for the future care. No worries right?? Well as you can see by my diagnosis the MRI found something that my mammograms did not and THAT was what was biopsied 4 times. I feel that all my mammograms failed me. If someone is able to benefit from my story and make this test happen for them, that would make me happy because my MRI may have saved my life.

Sara536 · November 2017

Welcome Mrs. Beasley!

Sorry you find yourself here but so glad you found Us! What a good idea to establish a baseline MRI. I didn't get one until I was about to have surgery- just to see if the mammogram missed anything. Maybe it would be a good idea for everyone to get one in their 30's (no radiation). One would think that HMOs and insurance companies would have figured out that it would save them money in the long run by catching things early. An MRI might have caught my bc at stage 0 or 1 instead of stage 2. (the radiologist who found my stage 2 documented that he could see it on a previous mammo when he reviewed my history.) The RO who read that one missed it. (Of course the 2nd RO knew exactly where to look.) Also a good reason for getting second opinions when you can.

Mrs_Beasley · November 2017

Thank you Sara536. Yes. I feel strongly that this test should be done in conjunction with mammo's. Dr. told me by the time my mammo would have found this it it would have been a much later stage. I'm sorry your RO missed yours the first time that's upsetting to say the least.

I don't understand why the MRI is so costly, I believe this is why it's not more of a standard practice. There must be a way to make this more widely affordable to all, if my insurance didn't cover part of it I'm certain I would NOT have had one because of the cost, since my mammos were normal and this was simply to establish a baseline. It's scary. The MRI while costly I totally agree, would save thousands and thousands of $$$ and many many precious lives in the long run!!!

MTwoman · November 2017

while the cost of mri is certainly a factor in not recommending it for every woman in her 30's, the high incidence of false positives (leading to biopsy) is also a factor, as well as the fact that the majority of women do not have bc. I have not seen population based recommendations on screening mri, but have certainly seen it recommended for high risk women. Remember that the group on these boards are not "typical" women, so the screening that we've needed is not what most women need.

Sara536 · November 2017

I really don't know where I stand on the fear of false positives. "What I don't know won't hurt me" was my motto for much of my life until my 50's (along with fear and distrust of doctors) but I certainly wouldn't recommend that attitude to anyone else. Now that I am past 70 and have PPO insurance I have been able to shop around a bit and have found some docs I like but still have a problem believing that they totally know what they're doing, other than following directives from drug companies. I mix in my own "research" before making decisions. Who knows if I am coming out ahead on this or not. I know now that I was right to refuse HRT and I also refused a fancy mesh solution to prolapse which has since been recalled and is now entangled in many lawsuits. My biggest problem now is accepting the one-size-fits-all prescribing of anastrozole. I contacted the Stanford medical library on this subject (they will find and reproduce articles and studies and mail them to you free of charge.) I also contacted AstraZeneca (makers of brand name Arimidex). It turns out that everyone gets 1mg regardless of age and weight because they actually haven't studied dosing taking those things into consideration. Personally, I think that is dangerous and highly irresponsible.

all_done84 · November 2017

I’d like to thank everyone for their replies. I have enjoyed this forum so very much and have learnt so much. The amount of love each of you have it overwhelming. I never personally thought of asking for an MRI, but I will consider asking my doctor about that. I’m in the middle of doctors right now, so will be asking the new one about it as well once I meet her next Monday.

I had to move my U/S back to next week because I had a work issue come up for this week. So that really sucks. And it just so happens to be in my birthday too, which is not what I would have picked to do on my birthday. When I called the radiology place to move my appt she seemed taken back. She said, “you do realize your doctors made notes of concern and would like this done ASAP”. I know it’s bad of me to push it back, burn I cannot miss this meeting. If I don’t need work, I don’t make money and that’d just be one more thing to worry about.

I got my menstral cycle last week. I was so hopeful that the soreness and lump (on the other side) would go away. It didn’t. Some of the pain did (the regular menstrating pain that I get), but I’m still getting the ‘let down’ feeling that ends with what feels like shooting pain coming out of my nipple. There’s been a few times that I’ve actually checked to see if it was bleeding for how intense it feels. I also still have the lump about 3-4 cm above my nipple of the other side.

all_done84 · December 2017

Hey everyone,

I just wanted to post an update....

I had my U/S on Wednesday and have been in so much pain since then. Pain that is getting worse by the hour and I’ve been swelling pretty bad too.

I had a panic attack at work today. Not necessarily because I thought I had cancer. I don’t think that was ever the big thing. It was that something is wrong. Breast are not supposed to hurt like this. These changes are not normal. I feel my body is not right and that’s scary.

So, I called the radiology department and asked them to get my reports ready for me to pick up for my files. At first she said that I need to ask my doctor at my next appointment. I explained how my breasts have been after the U/S and that I was panicking about it. She understood and said they’d be ready for me right away, but if I wanted, to come between 1-1:30 and that the radiologist May have time to talk to me if I had any questions.

Bottom line; there was no malignant findings. Thank goodness. What was found is a more severe case of fibrocystic breast condition. He said this is common and not to worry: however he noted that there were a lot of cysts (he said at first that my breasts were full of them), he said there were many many more then he normally sees and that I have a few in each breast that are larger then 1 cm (but vary in size above that) which he advises we keep an eye on. Theres one in my right breast at the 9 o’clock position and one in the left at about the 4 o’clock position that he would like to check on in three months.

Thank you everyone for reading my posts and thank you to the ones that responded.

I will be moving to the benign forum now so that I can vent when needed, ask questions if I have them and support those who need it

Cheers

I just don’t know

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