Sudbury, Ontario, 33, Needs Advice, HELP PLZ

BarbieBush

Hi, Just want to start off by saying this is a great site for researching and knowing you are not alone..

I have been sick for over a year, with constant colds, viruses, even just got over a bout of the shingles.. I feel very weak, tired, always throwing up in the early am, no appitiete, just overall ill...

I was adopted and I have recieved soe of my bio health history. My bio mothr had breast, uterine and brain cancer, her 2 sister, which would b my aunts, both also had breast cancer, as fo the type I am not sure of that.

I had my first mammo and ultrasound in 2010 because i had a dilated duct at that time, results were my breasts are composed of extremely dense tissue, a dilated duct at the 10 o'clock region and multiple cysts throughout my right breast, largest behind the nipple measuring 12mm. left breast has collection of cysts or a soitary seperated cyst total 17mm, here are a few more smaller cycts. no solid mass on either reports..

Now over the last month while i was sick with the shingles I had noticed 2 small hard like rock feeling lumps in my right breast, so i looked up how to do a proper self examine, and when doing so, I found another third lump and also bloody, yellowish discharge from my nipple along with swollen lymph nodes.. On sunday i went into a walk in clinic as I have no family doctor, the dr I seen did a breast examine and felt the lumps right away. She sent me for a mammo and ultrasound, in which I had done yesterday. The radioligist came and seen me after my ultrasound on my request. He assured me that he is convinced that its all just cysts and nothing to worry about right now, have it checked again in 6 mths and if i still feel that something is wrong over the next month to just come back in and he will then let me speak to a breast surgeon..

I am still very worried, as i know with all my research that it is very hard to detect cancer in very dense breasts, also very concerned as my immune system has been extremely low and have been catching everything under the sun..

Please anyone out there with any advice or going through the same thing, please let me know.. Thank you

nihahi

Sorry this is what's happening with you. My advice would be to do what the radiologist said....ie....go back, NOW, and insist on being seen by a breast surgeon. With your known history of cancer, you do need to be more vigilant, but you don't need to live in fear for 6 months. Get checked by someone, ask to have a biopsy to be sure. 6 months of living in fear is not living....it's existing. Good luck to you. 

BarbieBush

Thank you so much for your quick reply and suggestions. As soon as this present cold is gone i will go back and ask to see a breast surgeon and have a biospy and mri done.. As I know my body, and something is wrong..

Once again thank you..

Enerva

Hi Barbiebush just wondering if you are ok, i was mdx at the beginning too, i was told not to worry and to follow up in 6 months it turned out to be BC. So please hurry and demand to see an specialist. Hope all goes well

Take care

BarbieBush

Hi Enerva

I am okay, Thanks for asking.. I have recently been sent to a breast surgeon, he didn't say much to me the day we met, just had me lay down on thetable felt both of my breasts, helped me sit back up and ten said, u have very lumpy dense breasts that are full of cysts, my next step would be t send u for a MRI.. So my MRI is on Dec 4th and I go back to see surgeon Dec.20th..

I have still been having nipple discharge, that's now yellowish to a rusty color when dried on Kleenex, my underarm is very lumpy and tender, and my left nipple seems to be folding downwards, hard to explain. I also have dimpling in both breasts, and a weird burning sensation and also my breasts are very tender nd painful a lot..

I don't know what else to do except to wait for this MRI..

May I ask you, did u have any symptoms, and how long from ur misdiagnosis to proper one, and what tests caught it..

I am so super scared as I know something is wrong...

CelineFlower

waiting is a big part of being a patient...

Dont forget to live..laugh..

Enerva

Hi i actually had a mammogram first and the dr. say mammo was ok it was just dense tissue and that the cyst could go away by itself, he wanted me to wait 6 months, like you i knew something was wrong so the next month i went to my family dr and i demanded a core biopsy it can be done way before you MRI. and it can test the cysts or tissue. I dont know if you have a family dr. but Any Dr. could arrange it. the waiting is the worse. The biopsy took 2 weeks to comeback. Hope this helps i had the same weird feeling on my right breast and then my cyst started to grow like crazy from been a very small cyst it went to 5.25 cm by the time i saw an oncology after the Biopsy. Try to keep positive but see if a Biopsy can be arrange before December even if you have to come to another city. i can give you names of Dr. here. I know it sounds crazy to go to other cities but i met people who come from very far to Princes Margaret in TOR. they even have a lunge or hotel for people who comes from far. Anyway dont stress i just wish i can help. Let me know if you need anything.

bluepearl

Barbiebush: you may have cysts that are infected but I don't understand why they don't want to do a needle biopsy just on the nipple one for safe measure. However, much of what you relate does sound like infection...antibiotics?

Enerva

I agree with bluepearl there is no way you need to wait till December. 

BarbieBush

Thank you so much for all your inputs and support. I don't have a family doctor as of yet, been with Health Care Connect now for 4 yrs still trying to obtain one. I have had a infection in my breast around 3 yrs ago, a infected dilated duct, was given antibiotics for that, this doesn't feel anything like an infection..

I am gonna go back to the walk in clinic, and see what the dr says there. I need to also go get my blood work results from the cinic as my breast surgeon mentioned but didn't talk about me having high levels of protein in my urine along with low levels of Vitamin D and extreme Anemia...

I am just trying and hoping for the best..

Enerva

Ok Barbie i am glad someone else will see you, pls mention the core biopsy, its a special test which will take a small piece of the tissue and you will have results faster, sooner than the MRI.

Take care keep us posted 

BarbieBush

Thank you so much, I will ask the dr at the walk in clinic and see what they can do for me. And I will keep u posted..

Rdrunner

You are near Sudbury right ?, even for the high protein and anemia you need to get seen too. Do not wait until december . You need to call the breast surgeon back and tell them you are not comfortable waiting that long,

keep us posted

BarbieBush

Good Morning RdRunner,

Thank you for your reply. I have called my Breast Surgeon a week ago and explained to the secretary that I was very uncomfortable waiting till Dec to be seen by him again as my symptoms just seem to get worse. She told me that he wasn't able to see me till dec.20th as it has to be after the MRI. And my MRI has to be 5-12 after my period begins, and here in Sudbury they only do Breast MRI's on Wed during the day only, so or wait list is very long..

I just moved this week from Chelmsford ON to Sudbury so I can be closer to the walk in clinics and dr appts..now that the move is done and I have most of everything unpacked and organized, I will make a trip back to the walk in clinic regarding my blood work results and to ask about being sent for another U/S and hopefully to another breast surgeon as this wait is too long for my liking.

Where abouts in Ontario are you?

BarbieBush

Here is my mammo / U/S report....

Mammographically bilaterally the breasts have extremely dense fibrogladular tissue. This markedly limits mammograhic sensitivity and specificity. There are no areas of architectural distortionand no abnormal microcalifications. Bilaterally there is the impression of several vague rounded densities, detail limited because of the dense tissue.

Bilateral ultrasound is performed. Bilaterally, there are multiple cysts, specifically in the right breast, one o'colck position 2 cm from the nipple measuring 0.5cm, 12 o'clock position 1cm from the nipple measuring 0.6cm, 9 o'clock position 2cm from the nipple measuring 0.9cm.

In the left breast there are also multiple cysts, for example 6 o'clock position 1cm from the nipple measuring 0.7cm, 3 o'clock position 1cm from the nipple measurig 0.8cm and at the 12 o'clock position 2cm from the nipple a 0.8x0.4x1.0cm area of decreased echogenicity, could be a complex cyst or fibroadenoma, at the 9 o'clock position 1cm from the nipple, a 0.5x0.7x0.4cm area of mixed echogenicity having the appearance of a complex cyst...

.........................................................................................................................................................................................................................

I also have swelling and tons of little soft and hard lumps in my right armpit, my left nipple is starting to fold downwards, my right nipple is retracting and wen laying flat on back it caves in. Not sure what to make of all this..

Enerva

Barbie i don't trust Mammograms, Mine said A couple of well define hypo to isoechoic masses as follows: 11 o'clock 10.8 x 11.6x 5.1 mm

12 o'clock 6.4x 5.5x 5.8mm 

A few small periareareolar anechoic masses measuring up to 5.3 mm 

Interpretation: Palpable lumps in the upper outer quadrant of the right breast correspond to benign appearing masses either representing cysts with a high proteinaceous content or fibroadenomata.

Recommendation: 

follow up of the complex masses in the upper outer quadrant of the right breast with a repeat sonogram in 6 months to ensure stability.

So guess what : The core biopsy said: Invasive Lobular Carcinoma 

that 12 o'clock lump grew to an over 5 cm tumor by the time i saw a surgeon.  

I only trust Core Biopsy test, i wish you get one soon  

Rdrunner

it doesnt matter re the 5 to 12 days after period, that was no issue for me what so ever. With dense breast tissue ( mine too was 95% dense) mri is the best test. You have a lot going on with cyst etc and they might be what is causing the nipple distortion etc but with everything else like under arm etc etc call the surgeon office or call the mri department at the hospital and get on cancellation list at the very list but maybe ask for an urgent or get your surgeons office to do it. The cancellation list thing you can do yourself and call no problem. Im in Hamilton so not close but i don know sudbury's cancer centre is excellent as years ago a friend having chemo that was there for soccer tournament had problems and got infection while there and they were amazing and he had to stay there a few days.

BarbieBush

Thank you for your reply, I have tried calling my Breast Surgeon Dr Bhatia back to ask if I could get in to see him again before Dec 20th, thats my apt date with him. But apparently he is not back in this area till then..

I also have called the Mri dept at Health Sciences North here in Sudbury to ask to be put on the cancellation list, but here in Sudbury for breast mri's they are unable to do that. I guess when I go in on Wed Dec 4th, they only see 4-5 patients that whole day. There is a whole team, surgeons, radioligists, and oncology who all meet tgether at lunch to go over the patients MRI and history, All mri's are done in the a.m that day then we meet with the Cancer Team after lunch and go from there, most likely biopsy.

I have went back to the walk in clinic last week to get my blood work results, and ask about my new and continuing symptoms as I dont feel right waiting another month with everything going on. The Dr at the walk in clinic mentioned she felt the cluster of swollen nodes going up into armpit and also under collar bone. So why should I have to wait??? I don't get it.

Ihave tried asking for mri referral so I can try to get in somewhere quicker, but hasn't been able to obtain a copy as of yet. I did however pick up a disc copy of all mammo's and u/s...

What is my next step??? Should I really wait till Dec, or keep pushing???

Ridley

Hi Barbie. The waiting is so hard. Would you have the ability get to Toronto? If you do, I would recommend getting a referral to the breast cancer rapid diagnostic centres at either Princess Margaret or Sunnybrook. Good luck. Ridley

Enerva

Hi Barbie just wondering how your appointment went, Hope the new doctor gave you the attention you need. Fingers crossed all will turn out ok

BarbieBush

I have only went to see a dr at the walk in clinic who felt cluster of nodes under right armpit. I then called back my breast surgeons office and explained all new symptoms, what dr felt at clinic and my concerns. They made mea appointment for Nov 5th to meet with surgeon again and repeat U/S and I also told her I am requesting a biopsy on the 2 questionable cysts??complex cyst?? fibro?? as in reports they couldn't tell what it was.

Recently I have been having this new pain, mid back, along my spine. It feels like there is a lump, cyst there, or just weirdly swollen, the pain under shoulder blades and rib cage have gotten muc worse also, along with now changes in nipple aerola colors and also puckering. So hopefully we can get to the bottom of all this.

Thank you so much for keeping in touch.. As I am pretty freaked out bout it all..

Enerva

Barbie let us know how your appointment turned out. I hope you are not in great pain from the biopsy, try to rest and be positive wile you wait for the results. Waiting is the worse part. Hope all gets back benign. 

  

BarbieBush

Hi, s went to the breast surgeon today, he did another clinical breast exam, advised me he would need further imaging t go through with a biopsy, so he is going to get the mri moved up and should have it done and also back to see him before the end of the month.

He didn't seem to concerned, which I guess is a good sign.

Enerva

Hi Barbie, just wanted to check how have you been? hope you are ok and that you will have your MRI sooner. I have been well just hoping this month goes away fast to have my surgery in xtmas.

Keep us posted 

BarbieBush

Thank you for checking in on me, haven't heard anything yet, called back breast surgeons office 2 days ago they said they would look into it and call me back, but still nothing.. Really don't know what else to do, feeling stuck in the same place for mths.

Enerva

Wow, i hope they do call you soon with a better date for your MRI. Lets hope it will all be ok at the end.  

Enerva

Hi Barbie, hope you are ok, let me know when do you get your results, fingers cross all turn out ok.

Enerva

Hi Barbie, any news about the MRI results? i hope you are ok keep me posted. 

BarbieBush

Sorry for the late reply...

I had my breast MRI done on Dec.4/13, and then met with my breast Surgeon on Dec.20/13. Here are my MRI results.

Findings: Multiple benign cysts without any suspicious enhancement characteristics biiaterally. Centrally, in the retroareolar aspect of the right breast there is a nonenhancing debris-containing cyst, possibly with hemorrhagic products, but no suspicious enhancement. The fibroglandular density is marked bilaterally. No edenopathy.

Impression: Diffuse bilateral fibrocystic breast disease. Bi-RADS 2. No suspicious features. Resumption of routine screening is indicated.

When I met with my surgeon, he went over this report with me, I tried to inform him of the new lymph nodes that are now enlarged above collarbone, and now also going up my neck, he dismissed it and said I don't feel your nodes have anything to do with your breasts. Then said, come back and have your routine screening in a year. I was shocked...

Over Christmas and New Years, The nodes never disappeared, in fact more continued to enlarge, which prompted me to make another visit to the walk in clinic. I seen Dr Henderson, the original dr who sent me to the breast clinic. She did another exam, and thought maybe the nodes were enlarging due to possible lung infection, so she then put me on a antibiotic Zpak. I took them for the 5 days as instructed, lungs felt much better, but nodes continued to stay the same...

So sat Jan 18/14 I decides to go into emerge and seen dr. Bourdon to oredered bloodwork and chest xray right away.. Bloodwork and xray were clear. So he then ordered a cat scan of my chest, abdomen and pelvic areas which I had done on Jan.21/14. Dr. bourdon himseld called me back on the 22nd to let me know the result of my ct scans. They found a large mass on my right ovary, something sgowed up in bowels and stomach, heart, lungs, liver, spleen were all cleared....

So now am being sent for another ultrasound, to a gyno and a gasterolegist...

Enerva

Barbie, i am so sorry its taking so long for some one to look into this symptoms. I hope they now will figure out what is causing all of it and then give you the correct treatment. 

Sending you hugs 

BarbieBush

Well I went and seen Dr Shum, Stomach surgeon on Monday. He went over my CT scan results with me and aso some blood work results that I had. Turns out I also have H.Pylori a bacteria in my stomach, so he put me on HP Pac for 2 wks, then scheduled me for a Scope of my stomach for Feb 25th. He then mentioned that I also have kidney stones in both kidneys.

Tuesday I went for my Pelvic and Trans vag ultrasound on the mass the found on my right ovary during the CT Scan. I should get those results next week.

When  called Dr Splinters office (Gyno) and asked about my appointment, her sec said that she would be sending back the referral as the Dr didn't see any mass and it was noted that it wasn't a gyno problem. So I then asked the Sec would she be letting the Dr Bourdon the Doc I seen in emerge that referred me to her, that she didn't feel it was a gyno issue. And the Sec said no you would have to see her then she would have to send him a report stating that. When asked Y would ihave to make an apt and see her before she would let the other Dr know, doesn't make sense really.. So she booked me an apt for MAY.6th, crazy eh... So now just waiting for more tests and more results...