Calling all TNs

greenae

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.

wrenn

i am grade 3 triple neg. my tumour was 1.5 cm on june 15th and the same size after surgery on August 16th. I tend to agree with it being inflammation. Hang in there

greenae

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.

Cocker_Spaniel

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.

 

sylviaexmouthuk

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

slv58

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

ALHusband

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!

greenae

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?

wrenn

Greenae there are relaxation or meditation videos on youtube that can be relaxing. I like the body scan meditation by Jon Kabat Zinn. There are also breathing tapes by Andrew Weil and others. I am reading about Mindfulness and just started a course on this and so far it is calming me somewhat. I will keep practising the meditations. I will also take ativan on a particularly stressful day. I have had an ativan prescription for years but have never ended up using a lot of it. Having one peaceful day of using it calms me for a few days because once I take it I can practice meditation or getting my scary thoughts in order.

Another trick I use lately is if I am having a really scary thought I ask myself if it is true. I dissect the thought to come up with reasons it might not be true. Hang in there.

greenae

Thank you, wrenn...I will look into all of your suggestions. I am trying to take myself out of this wait and worry mode.

anotherNYCGirl

Greenae, - what type of music does your son's band play? where are they performing?

ENJOY the music, go shopping, eat brunch out, - whatever it takes to get out and think of things OTHER than cancer!!

sylviaexmouthuk

Hello Shari,

If I were you I would get everything done as soon as possible to give you that peace of mind that we do not get when we are waiting and worrying about what might be.

As far as I know the best way to find out about osteoporosis is to have a DEXA scan. Osteoporosis usually develops slowly over time. That is why in this country, the UK, we can usually only have a DEXA scan every three years. If you have developed hyperparathyroidism (over active parathyroid) just recently, I would not think there would be much in the way of osteoporosis. If you have high PTH you should be offered a sestamibi scan which will show up the usual four parathyroid glands and will show where the adenoma or adenomas are. The surgery to cure all is this is relatively straightforward.

You should mention your problem with swallowing again, preferably getting an opinion from a consultant and getting it sorted out.

I do remember all that snow! I lived in Ottawa for nearly nine years and in London, Ontario for nearly four. Before that I was in Montreal.

Let me know how you get on and keep looking at the threads I mentioned.

Best wishes.

Sylvia

greenae

Hi Anothernycgirl

My son plays lead guitar and vocals in a cover band. It's a great time! Seems like yesterday he was 3 and I gave him a light blue plastic guitar...and he's been playing ever since...lol. He plays in local bars (SI), and last summer played at The Bitter End.

I put my new exercise bike together today, so I am ready to stay in shape for this battle! ( feeling a little better, I know I have no choice...so I AM REALLY TRYING to stay calm.

Thank you!

arlene

Lisaj514

http://www.huffingtonpost.com/peggy-nolan/11-invaluable-lessons-i-learned-from-having-breast-cancer_b_6435594.html

Saw this on fb and had to share with all of you. You'll love it. Lessons for everyone. We do come out of this stronger and with a clearer eye for ourselves and the world around us. For all of us warriors in all stages of treatment, recovery and survivorship

Cocker_Spaniel

Lisa that was great. Very informative.  I reckon I might be a quarter of the way through all of those lessons so a long way to go yet.  But it was very enlightening for me. Thank you.

   

BanR

Hi everyone..

Logging in after a long time and so very glad to see everybody writing and talking as usual

I will be relocating to Milwaukee very soon. Hardly know anybody there. Anybody living in or around pls pm me your contact.

Dealing with a couple of new problems

1. Cycles back but body unable to produce estrogen progesterone. As a result of which it continued for days n days and now progestrone is being pushed in synthetically now. Cant give esteogen since ot might trigger the cancer bavk. If it doesn't resolve in 2 months then maybe she would ask for an endometrial biopsy.

2. Lightheadedness, palpitations every morning. Suspects some inner ear damage due to chemo resulting in vertigo. Again he will observe for a few more days post which he would need to scan me. Apparently brain Mets also shows up like this, is what i read about. I hope its plain vertigo or something like that and nothing else.

Happy to hear that all r doing well!

Sending warm wishes to u all.

Cocker_Spaniel

BAK good to hear from you after such a long break.  Glad to hear you are doing reasonably well apart from the vertigo and palpitations.  Will you be working in your new town.  It won't take you long to make friends especially if you start walking that gorgeous dog.   Hope you stay around on here for a bit before taking another break.

Teka good to hear again from you. Just loved your picture of the Teddy's cuddling. 

slv58

BanR so good to hear from you, but sorry your under stress and hope your issues resolve quickly. I hate the stress we can be under with new issues, havnt we all been through enough?

Teka, I also loved that pic and want to thank you for that-I discovered it when feeling alone and really needed a reminder that none of us on this thread are ever alone {{{hugs back!}}}

simplelife4real

Lisa, I loved that article. I just saw it this morning on FB and reposted it to my page. I feel like I can say "ditto" to every lesson learned. I live very differently than before bc on so many levels including how I refuse to let what I call "crazy makers" get to me.

BanR, good to hear from you. I don't live in Milwaukee, but I'm up in that area at least once a year. We will probably be there in early June. Don't be surprised if I contact you! I hope your move goes smoothly. Moving is a lot of work! I did it a month before being diagnosed with BC. Take care of yourself during the process. You are worth it.

Luvmydobies

Thanks for checking in Ban! Sorry you're having some issues though. You're in my prayers. Keep us posted! HUGS!!!

I have my three month checkup tomorrow afternoon with my Oncologist. I'm a nervous wreck as always before my checkup. Ugh... I'm going to mention my menstrual cycle still being screwed up. Although I don't know if he will order any tests such as ultrasound. I hope he does because I have off and on pelvic/lower abdominal pains. I haven't had a period since December though. Just wish there was a test to tell you if you're in permanent menopause or not.

Two weeks ago, I did have a normal pelvic exam. Pap test and my CBC and Metabolic panel were also normal so at least there's some good news.

Hope everyone has a good rest of the weekend!!

slv58

Luvmydobies , I will be thinking of you tomorrow. Maybe just ask for an ultrasound and let him know your worried. If he doesn't think it's necessary, at least he will explain why which should reassure you. I guess I'm lucky, after having horribly heavy periods for probably 15 years, I went I to chemopause after my first tx! Yahoo - another benefit of chemo.

Luvmydobies

Thanks Shari! XOXO!! I'm still thinking of you and praying as well for your Wednesday appointment. Keep us posted. I'll post again tomorrow after my appointment.

anotherNYCGirl

Greenae, - sounds like your son has found his calling! That's great! (It really is amazing how fast they grow up! My daughters are now around the age that I tend to think of myself at!! )

Lisa, - thanks for sharing that article!!

Luv, Ban, and everyone else seeing their drs this week, - may all go WELL with GOOD updates!!

Cocker_Spaniel

Luvmydobies I'm with you re appointment, mine's tomorrow (Tuesday) as well and stress is always lurking there somewhere. I just want to get it over with. I don't think I will ever miss periods. Every month was so painful and heavy. I was so glad to have a hysterectomy when I was 32.  Will be thinking of you and hoping he orders an ultrasound and puts your mind at rest.   

BAN (Sorry called you BAK) have you sold your home.  I am interested in the American way of selling houses.  One of the girls at work's sister lives in  California. She sold her house months ago and the people are living in it but she won't get the money for the house for ages.  Is this normal  for the American housing market. Apparently her sister is living in a trailer until the money for the house comes through.  Hope your move goes smoothly and you don't over do it unpacking.  I had some ringing in my ears for a while after chemo which did go away but when I lay down in bed at night and turn off the light sometimes I get a spinning sensation which quickly goes off.  I guess these are the after effects we will have to put up with.

Shari I have a wonderful hubby and family and really great friends but I too sometimes feel alone and wondering about how this cancer is going to pan out for me or just thinking I should keep all my worries to myself.   I do appreciate life more and all it has to offer  but I also feel I am a bit grumpier than I used to be.  I was always laughing or making someone laugh but now find myself quieter (which may be a good thing!!).  I will be thinking of you on Wednesday and hoping you also get some good answers.  

greenae hope you are feeling better today and more positive with your warrior pants on.  Once things start to take off you might find you are able to cope a bit better.

Cancer sux big time girls.

slv58

Cocker_Spaniel, thank you so much and I'll be thinking of you tomorrow as well! Wishing a very quick uneventful appointment. Then go out and do something nice for yourself, maybe lunch? A bouquet of flowers or a big box of chocolates just for you!

slv58

Luvmydobies the above goes for you as well!! We are a great group of women, aren't we!

Luvmydobies

Indeed we are Shari!

Cocker, thinking of you too! May we all receive good news. Praying and holding everyone's hands and in your pocket too! XOXOXO!!

Tobycc

Please know I will be thinking of all of you with tests this week and are under stress! May you feel calm, and in peace.

Gentle hugs

Kath

Cocker_Spaniel

Thank you Kath I think we all need your gentle hugs

 

greenae

Thank you, Kath...your hugs and thoughts are appreciated.

arlene