Calling all TNs
Comments
-
-
bchusband and alhusband, do you know you are kinda like "our" husbands? and have you told the wives? lol!hugs to you both!
0 -
Shari - You might have to add a big handbag in case your pockets aren't big enough! We're all with you, and completely understand the fear that all of this brings. Sending positive thoughts that it's NOT breast cancer related. Wish you could get in earlier because the waiting causes so much anxiety. I'll be thinking of you especially on the 11th. Fingers (and toes) crossed.
Hugs,
Kathy
0 -
Im jumping right into your pants!!! Hope that got a giggle anyway
Prayers, prayers prayers: and think more about calling. Hugs and love
Kath
0 -
Hi All I Need You. I spoke with breast surgeon today re: MRI (yesterday) Report. At my core biopsy I was told my mass is 8mm x 7mm x5mm. My MRI shows a 6CM mass. How is this possible? I am so upset and anxious, again. I have to have an MRI guided biopsy 2/10. The radiologist will place a second clip at the posterior margin of the mass which is at 10:00, left breast, 5cm from nipple (that's where the first clip was placed during core biopsy) I am so afraid this changes Everything. 6CM vs. 8mm. That is 6 times bigger. I think I am losing it. It's non-palpable... the mammo and US did not see this 6CM? I feel like I just went from Early Stage to...it's everywhere. I just want it out...and now another week added because of this finding. help, please.
0 -
Greenae, I am so sorry you got this news today. I know you are so scared. I want to encourage you to go deep inside that place where you store up your strength. Go there and hold on tight. Even with this news you can win this fight. You can. I hope you are comforted by prayer, it really works. And let your support team know you need them now.I was told by a wise therapist that "Love Heals". Stay calm and positive and love yourself, dont fear dont despair. We are here for you.
0 -
Shari- make room-I'm jumping in your pocket too!
Greenae-we haven't met-but I just read your last post. Sorry you got this news. Hang in there-we're all here for you.
I will keep you both in my prayers. Hugs, lilyros
0 -
Thank you, Meadow...I just am in shock. My surgeon was only on phone with me a few minutes because she was in the OR. Is this a common occurrence? To multiply the size by 6? I feel like I cannot function properly with this not explained to me. Maybe I want to put my head in the sand and think it's a mistake? I have been told for the past month by radiologist, surgeon and MO..."It's so small, you'll be fine." Then the Triple Neg, now this... I am really having trouble feeling "Warrior-like." I will try to find strength. No choice, I guess. Really need to have this week go quickly. Thank you for your supportive words and advice
arlene
0 -
Greenae, - it doesnt matter what size it is, - just get it taken out and proceed from there. Grade 2 is already better than some of us had. Wait and see what is ahead. Dont assume the worst!!
Hugs across nyc to you!
0 -
Hugs back at ya Meadow!!
greenae - that sounds odd. Was the original diagnosis made with ultrasound or mammo? In larger dense breasts and younger women mammo's are not ideal for picking anything up due to the high background. Ultrasound is much clearer. Its seems implausible that whoever scanned you, measured the mass at less than 1cm if it were indeed 6cm. Also a 6cm mass would feel big. If that was missed first time round someone needs to be finding a new job. Some tumors can grow fast, but a grade 2 going from 1cm to 6cm in this time frame doesn't fit.
If it is 6cm don't panic. It may be that the MRI is picking up inflammation as well making the mass appear larger than it is.
Try and stay calm. I know its easy for me to say, but do whatever you can to hold it together.
Hugs and prayers from the UK
BCH
0 -
The receptor being targeted with the potential vaccine is the folate receptor alpha and it is indeed over expressed in TNBC - especially once the f*****g cells have got very aggressive. One study in rats has linked folate to enhancing some breast tumors - but since cells have multiple ways of obtaining and processing folate, I wouldn't have thought this would be an issue. But this is possibly something that should be looked into. Probably a random link and me looking for a cause, but my wife suffered two miscarriages before the current pregnancy - between May 2013 and pretty much up to her diagnosis in October she was taking folate supplements - so who knows. More research needed.
This is great news about a possible vaccine though - fingers crossed!! I work in research myself - specifically blood clotting. But have been getting more into cancer research over the past few years and with perhaps cruel irony had just set up some breast cancer related projects before my wife found her lump. The idea I've been pitching to get funded and which this week have been given a small amount of money for, is to give breast cancer cells chicken pox! Sounds mental, but the idea is to target a protein on the cancer cell surface that the cell needs to grow or invade - and we'll target it with a small molecule that will stop it from working. But linked to that molecule will be one of the immunogenic parts of the chicken pox virus. The concept being the small molecule binds to the cancer cell and inhibits something and at the same time decorates the cell with part of the chicken pox virus. Since most people have had chicken pox the theory is the immune system will simply recognize the cancer cells as being like chicken pox and produce an immune response.
Anyway, as always hugs and prayers all around
Be brave and strong
xxxx
0 -
Anothernycgirl -Thank you. I like your attitude. I want it out now! I really thought the phone call today would include planning a surgery date. ugh. Another week to wait.
BChusband---That's what I am thinking! How can there be such a huge difference in size? Mammo, 12/29/14, showed focal asymetry. First targeted US, 1/2/15, showed 10mm mass. US during Core biopsy 1/12/15 showed 8mm x7mm x5mm.Had breast exam, 12/2/14, nothing felt. Then 2 breast exams (surgeon and oncologist) 1/28/15. NOTHING on palpation. I really want to say, "WTF!" (Getting mad makes me feel better
And I know it didn't grow that fast in 3 weeks. I am so hoping it's inflammation from the 4 cores removed and the clip placement? I am trying to stay calm. Thank you for your thoughts and support. Would like to take a Road Trip to Jacksonville and help myself to that vaccine!arlene
0 -
if you've had 4 cores done and clips I'm not surprised its glowing like mad on an MRI. The internal area is likely to be bruised and full of inflammation.
Tell you doctor to stop messing around with scans and measurements and just get the thing out!
xxx
0 -
thx bchubby! I am afraid now they will take so much out, whats the point of lumpectomy??
0 -
Arlene I'm praying for you! Try not to put the cart before the horse.Here's to hoping it's just imflammation. It just doesn't make sense that it grew that fast, especially since it's grade 2. HUGS!!!
0 -
Greenae - I am so sorry you're going through this. I agree with everyone else, there's no way it could grow that fast and I can't imagine a 6 cm mass not showing up on US or not palpable. Sending you thoughts and prayers and you await some answers.
BChusband - the chicken pox theory is fascinating! Good luck with your research! I was also taking folate for infertility at time of diagnosis, but also taking DHEA which has been linked to TNBC as well.
For all the women on Metformin - what is the recommended dosage you're on? And do you have any literature you could pass along stating that recommended dose? My PCP has agreed to prescribe it for me, but she wants to see the studies and dosage info first. I'm supposed to fax it over to her today. Thanks so much!
0 -
Thank you EVERYONE! Didn't get home till 9:30 last night-very tiring. Well after reviewing my mammo and US, the radiologist came in and said that I have a lot of scar tissue but there was a small spot (exactly where I was experiencing a new pain) that was a bit darker than she liked. She was good enough to do a core biopsy right there and put a stat on results so I may have that by the 11th. They finally posted my hip x ray results, shows no mets visible! Nothing on bone scan yet. My bloodwork from yesterday is also posted and my calcium levels are elevated and just above normal. Hoping to discuss parathyroid on wed. because I'm hoping nothing else shows! Maybe if it's parathyroid it would explain all the bone and muscle pain I've had.
Greenae, big hugs hon, hang in there. My tumour was originally 2.2 cm with first diagnostic mammo but by the time I had biopsy and clip placed they changed it to 3.3 cm. I don't think it's unusual to have different size after biopsy etc.
hope everyone is well and I thank everyone for your love and support, it means so much and I would thank everyone individually but I'm exhausted and need a nap! I'll let you know how it goes wed.
0 -
TNBC trail=Ok here is the skinny on the clinical trial for the vaccine. I called Mayo Clinic in Jacksonville,Fl. They are awaiting for more funding to go through. They have not started the trial nor have they opened the trial for enrollment. I gave my name and some very brief information. It will be sent to the oncology clinic and they will call me if interested. She told me it could be months until this is started.Greenae=easier said then done. Just to relax. I hate all the added stress we get after being diagnosed. I was told I had leukemia after I was dx with TNBC.. I have since found out I do not have leukemia. Just a low WBC count. I was totally freaked and stressed out. Best of luck!!
0 -
Ally the trial dose is 850mg twice a day. That's what my wife is on. Her PCP prescribed it first, but her Onc has been prescribing it since.
0 -
Also taking850mg 2xday. Was told to ramp up slowly, 1/2 tab 1xday, then full tab 1xday, then 2xday. I had no side effects. SE could be diarrhea but I had none, no upset stomach, nothing. So I'll continue. My MO prescribed it. We also talked about low dose aspirin today. She said ok. May decreases cancer risk for colorectal, breast cancer, and its benign, no concerns she said so I'll prob start. Anyone else have input on this from their docs?
0 -
Greenae calm down girl you may be getting yourself all worried for nothing. Was your cancer found as a lump or calcifications as mine was. Calcifications can be scattered throughout the breast and over a wider area than if it was a lump. If you have neo calcifications then the area is taken as a whole and could be 6cm hence the reason only a mastectomy was offered to me. I had nine core biopsies taken but it still does not give a true picture of size as your surgery will. Your cancer will not be staged properly until you have had your surgery and your final histology report is in as this can change from test to test. As a dear friend used to say to me "Don't let worry take the joy our of your day". Find plenty to do, enjoy walks, eat well and exercise if you can because there is no point in worrying until you know for sure what is going on (I know easier said than done). Everyone of us on here have felt like you do and I'm sure they would all agree that getting worked up about something that may not be so, is pointless yet still we do it. Whatever your final results, you can do this even though you might not think so. We are with you all the way and sending huge big hugs.
Shari so far, so good, with the hip x-ray showing nothing abnormal. The parathyroid is only four little tiny glands that control calcium levels. Calcium balance is essential for normal functioning of the heart, kidneys and bone and it must be controlled to alleviate any weakening of bones or bone and joint pain. This may be a chance to discuss Zometa or Aclasta with your doctor. So this may be the answer to your pain. Hopefully the other results will show normal. Have your good rest now you deserve it. Big hugs to you.
0 -
thanks Cocker! I'm feeling a bit more optimistic. I developed thyroid problems after rads and am already on synthroid but after reading up on parathyroid, it seems like this may be why I havnt felt better on synthroid-still very fatigued and I have bad bone/joint/muscle aches from waist down. Was tested for rheumatoid and negative, my rheumatologist thinks it's inflamatory arthritis from chemo, but now I'm wondering if it could be parathyroid. I will discuss this with my mo on wed! I'm going to take a mental break from worry, thank you for reminding me that Cocker! and enjoy the week end!
Hugs to all
Shari
0 -
AL and Lisa - thank you very much!
Eileen - thanks for the vaccine info!
0 -
Slv58 so glad u r getting good results!
I am listening to my sons band play at a local bar. Done with cancer for today. I thank u all for ur support. Having mri guidedbiopsy tuesday. Tired of this, and it hasn't even begun. I appreciate all your warm thoughts.
0 -
Thank you, wrenn...I am just finding it so difficult to believe that a non-palpable, no-show on mammo, 8mm on US, mass can be 6CM on MRI. The next biopsy is pushing sx back yet another week. And my surgeon will want to take All of it. Is this MRI overestimating. Is my lumpectomy more like a mastectomy? I so hate my breasts right now. I am now entering my 7th week of waiting. Can't stand this waiting much longer. Starting to just want them both OFF.
0 -
greenae I can feel your worry and panic. I felt just the same. Just when I thought I could cope the doubts would fly back into my mind. Hopefully you can get a good nights sleep and feel better tomorrow. Hoping for a typo in your report and it's still very small. Hugs.
0 -
Hello Shari,
I am just popping in to say that, if you have any concerns about your parathyroid, you need to get a blood test to find out whether you have elevated levels of parathyroid hormone (PTH). This, if elevated, will give you a diagnosis of an over active parathyroid gland. The blood serum calcium level can be elevated, slightly elevated, even normal, but it is the PTH level which decides on the diagnosis of an over active parathyroid gland.
I have been all through this when I was diagnosed with TNBC in 2005. The oncologist investigated my slightly elevated calcium level to rule out any spread of cancer. She did the PTH test and discovered I had an over active parathyroid gland and that I had had it for some time. I saw my breast cancer consultant surgeon, who was also an endocrinologist, and she told me that I needed to have a parathyroidectomy to cure the problem.
We concentrated on getting me through my cancer treatment and recovery and I then, in 2009, has a SESTAMIBI scan which located the one parathyroid gland out of the four that was malfunctioning because of a benign adenoma sitting on it. I had the surgery in November 2009 and I have been fine since.
I had no symptoms of anything wrong, but my consultant endoctrinologist said that the usual symptoms could be described as moans, bones and groans. She said that even if I was not aware of symptoms, they would have been there and I would feel better afterwards. For your peace of mind, just ask for a PTH blood test.
You may be interested to know there is research showing a possible connection between breast cancer and hyperparathyroidism, with a debate about which possible causes which. All I can say is that my consultant said my hyperparathyroidism predated my breast cancer.
You may be interested to know, also, that there are a couple of threads here with lots of posts about these subjects. You will find them under the forum Not Diagnosed With a Recurrence or Metastases but Concerned in the thread High calcium. There is also another forum IDC (Invasive Ductal Carcinoma) and the thread Parathyroid disease and breast cancer. I have posted in both of these.
You may also be interested in www.parathyroid.com, a website with lots of information.
There is also on the internet a research paper carried out in Sweden about breast cancer and hyperparathyroidism.
In my own case, I was interested in the fact that my breast cancer was in my right breast and the adenoma was on the lower right parathyroid gland.
I hope this will help and lots of luck.
Special greetings to you in Ontario, where I lived for many years.
As for me, I am nearly ten years out since diagnosis and had a 6+ cms tumour.
I forgot to say that an over active parathyroid causes osteoporosis because it leaches calcium from the bones into the blood. I refused to have anything to do with bisphosphonates to treat this and just take Solgar Bone Support calcium supplements and Solgar Vitamin D soft gel capsules. You can keep an eye on your osteoporosis status by having a DEXA bone density scan.
Best wishes.
Sylvia
0 -
Sylvia, thank you for all this information! I've used the search tool and have read a lot of everyone's experience with both parathyroid and high calcium. Trying to educate myself and I guess come up with reasons other than mets to account for my pains. Sylvia will a bone scan show osteo the way a dexa scan will? If I have recently developed parathyroid problems, would it show this quickly as bone loss? I will ask my mo for a PTH test on wed. My calcium levels were only tested three times and the lowest they were was at time of dx. This has me concerned, so the reality is that I either have mets or I'm hoping a parathyroid problem. I've also had a problem with a lump in my throat feeling. I had a thyroid ultrasound last March that did not show anything unusual. I did a barium swallow test that did show I had a problem and last fri. had a gastroscopy with results pending but the Dr. said she didn't see anything concerning. Still this swallowing difficulty persists, could it be a parathyroid-adenoma that didn't show on ultrasound?
It is snowing here this morning and very dark but I'm going to enjoy the day regardless!
Greenae, I know that you are going through so much right now, but I agree with everyone here, it is probably inflammation and even if it isn't there are lots of women here with large tumours who are doing well-Sylvia above is one! If you are concerned with surgery results, ask your surgeon beforehand how much tissue she thinks she will be removing and what kind of aesthetic result you can expect. If you are having doubts about your treatment can you go for a second opinion? Hon, be your own advocate-please let your Dr. know that you don't want to wait any longer for tx and how all of this is making you feel- you have a right to express your concerns and worries to her. I hope you are feeling better today- going to see your son's band is a great step forward- your taking control!
Shari
0 -
Greenae, I don't think it is either. BUT, worst case scenario...if the tumor is that size, I want you to know that a guy I work with's wife had a 6+ cm tumor, TNBC, 9 years ago! She's just fine now!
0 -
Thank you all for your support. I am so trying to shake this anxiety. I didn't want to use my ativan rx, but I think I have to when I feel like this. I am getting angry with myself for not being stronger. My exercise bike was delivered...so I will go put it together and try to keep myself busy. Can anyone recommend a book I can read that will help me deal with this? I have "Stand by Her," for my husband...is there a good one for me?
0
