Tired and scared ~ 13 year survivor

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lagaviota
lagaviota Member Posts: 13
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi,  I typically never post to any forums but I'm feeling very worried.  I was dx with breast cancer stage 2b when I was 23.  Had a lumpectomy, chemo and radiation.  2 years after that I had another lumpectomy on the other breast but it turned out to be a fibroadenoma.  Then 5 years ago I had pretty extensive skin cancer on my nose which resulted in having part of my nose removed and reconstructed.  But I've been pretty healthy and I'm now 37.  So it's been 13 years since I was dx with breast cancer.  Anyways, for the past 3 weeks I've progressively been feeling worse and worse.  I am starving hungry all day long and I've been trying to eat every 2 hours.  But then I get nauseous when I eat and I start to feel dizzy.  If I don't eat every 2 hours, I start to feel like I'm going to lose consciousness.  At first I thought I had become diabetic or perhaps hypoglycemia but I went to the primary care doctor and he did a few labs, and he told me that my blood work is normal.  So now I'm waiting for an appoint in a week with the oncologist and also the gynecologist.  My only other thought is that perhaps I've started menopause.  But it's just really strange how exhausted I feel all day long, from the time I wake up to when I go to sleep.  I have the BRCA 2 genetic mutation and I've been told that I have a very high risk for developing cancer in the future.  My oldest aunt had cancer 4 times and passed away at 71 yo in April.  My cousin has been living with stage 4 inflammatory breast cancer for the past 5 years.  I just want to figure out what's causing me to feel this way all of a sudden.  I haven't felt this tired for this long since I went through chemo 13 years ago, I guess that's what's scaring me.  Anyways, I just needed to get this out of my system and write it here.  My family is in denial (yes even with multiple family members who've passed away from cancer...) about me having cancer in the first place.  They refuse to talk to me about it except for my mom.  But even she doesn't even want to discuss the possibility that I might have cancer again.  Just really feel scared.

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  • catbill
    catbill Member Posts: 326
    edited October 2011

    I am so sorry you're feeling crummy, and I can understand why you're worried.  I have no experience with this situation, so I can't add anything helpful. I, too, have a family (Dad and 2 brothers) who won't discuss my cancer with me. I think they are embarrassed, because it's breast cancer.

    I will be praying for you.  Let us know how you're doing.

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited October 2011

    Hello and sorry you are going through this.  I would make an appointment with a hematologist and get more extensive blood work done.  It could be your thyroid, it could be menopause, but we all know our bodies and clearly you feel there is something wrong.  I think more blood work would be a good place to start.  I doubt your primary care doctor did as many tests as a hematologist would. Good luck!

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2011

    I hope your doctors find answers for you.  I do find that when cancer is active I get much more tired than normal.  However, I don't get more hungry.  It really sounds like something is metabolically off with you, and menopause could account for some of your symptoms.

    I hope you get an answer soon! 

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  • SusanAnn
    SusanAnn Member Posts: 51
    edited October 2011

    Hello Lagaviota

    Just wanted to say that I agree with Kathleen - it sounds like your thyroid might  be off. Do you know if your dr included this test?  For some reason they never think to check it out.  I know because I went through so many other tests before I was properly diagnosed. I also think more blood work would be a good place to start.  Feel better soon and let us know how your doing!

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  • hrf
    hrf Member Posts: 3,225
    edited October 2011

    Hi Lagaviota   I am also BRCA2 and we have a very high risk of developing several different kinds of cancers. Is your oncologist BRCA savvy? I suggest you see your oncologist to ensure there is no new cancer asap. I don't mean to be alarmist but it's that I also have the BRCA2 dark cloud over my head. 

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  • lagaviota
    lagaviota Member Posts: 13
    edited October 2011

    Thanks so much for your responses and kind words.  It helps me greatly.  I made an appointment today to see the genetic counselor.  I'm going to see what the oncologist says next week and then I'll see about making an appointment with an internal specialist to do more blood work.  I'm a grad student so the initial doctor I see is pretty much useless because I have to go through the student health center (which is kind of a joke for someone with my medical history), but I have to get all my referals from them for the specialists.  I'll come and update this when I get any news.

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  • Cocococo103036
    Cocococo103036 Member Posts: 21
    edited October 2011

    Tough situation when those around you are in denial or for their own reasons don't want to talk to you about this. You have an odd cluster of symptoms which as many others noted, could be referrable to a variety of things. I know in the lead up to my breast cancer diagnosis I had raging skin problems and skin allergies as well as being fatigued, so now when that combination occurs, like you I start to worry thats its back. With everything you have been through and your family history your concerns are perfectly understandable. You are doing the right thing by working assiduously through the medical tests to identify the cause/s. With our sort of medical history you can't sit on your hands when you notice problems! Good on you for attending to this so promptly and we are all interested in hearing back from you about your visits, your tests and how you are feeling. 

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  • lagaviota
    lagaviota Member Posts: 13
    edited October 2011

    This might just become my venting thread...

    Every day it's getting a bit worse.  I see the onc on Monday so hopefully she'll help to find out what's wrong.  Currently I'm now eating 4-5 full meals, and a pint of ice cream a day, and I'm now losing weight.  I stopped wearing my contacts because they were giving me terrible vertigo, and I also can't wear any current prescription glasses.  I am wearing my glasses from 4 years ago and it sucks.  I've also been getting some heaviness in my chest but I think that's from anxiety from worrying.  I'm now thinking that it might be hyperthyroid.  I saw the doctor at student health again on Thursday and apparently he didn't test my thyroid.  He wanted to have me do the lab work for that yesterday but I don't want anything to do with him anymore and I'm going to insist the onc orders that blood work on Monday.  Life is so fun.

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  • YramAL
    YramAL Member Posts: 1,651
    edited October 2011

    lagaviota-I had Graves' disease almost 30 years ago, and I had every symptom you describe. It is a disease where your thyroid is overactive. I had to have my thyroid desroyed with radioactive iodine treatment, but I am fine. I had the vision problems, the vertigo, and the heaviness in my chest, which was from anxiety caused by the hyperthyroid. I also could not wear my contacts.

    I hope you get some answers soon.

    Mary 

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  • SAOIsenberg
    SAOIsenberg Member Posts: 429
    edited October 2011

    Lagaviota - saw your post in the young women section - then got here . . . I think your appt. was today - how did it go? Hoping you get answers soon.

    Take care,

    Sarah 

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  • lagaviota
    lagaviota Member Posts: 13
    edited October 2011

    Mary - Thanks for the info about Graves disease.  

    Sarah - Thanks for checking in on me.  :)

    The blood work that the oncologist ordered came back as all normal, but they only tested for my TSH levels and not the T3 or T4.  She told me to definitely see the endocrinologist and an opthamologist.  So I'm seeing gynecologist and the opthamologist tomorrow and will call to make an appointment with the endo.

    For the past 2 days, the hunger pangs have not been as bad and I physically I have felt good.  But my vision got worse again.  I have been wearing my older prescription but now they are making me dizzy and nauseous.  So hopefully the opthamologist can shed some light on this.  I've cried so much about this that I don't think I have any tears left.  This kind of stuff can really do a number on one's sanity.  :)

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  • Halah
    Halah Member Posts: 352
    edited October 2011

    lagaviota I am hearing your words and you are frightened. I hope you can find some calm and peace through all of this. So if the blood work your ONC ordered was all normal then it is not cancer! This is a really good thing. Try not to worry. You can vent here anytime. I've added this threat to my favorite topics and shall be listening in on your progress!

    Mindy :) 

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  • juliet62
    juliet62 Member Posts: 3,412
    edited October 2011

    did they check your pulse? it tends to be high with hyperthyroid, i had graves disease and had similar symptoms

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  • Halah
    Halah Member Posts: 352
    edited October 2011
    There's a good article of Graves Disease on PubMed Health on NIH.gov. You can find it here. Good luck!
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  • SAOIsenberg
    SAOIsenberg Member Posts: 429
    edited October 2011

    So glad to hear your update - I'd persue those other avenues, and then if you get no relief, try pushing your onc. to do more bloodwork . . . endocrine seems like a big possibility - do you have a lead on a good one? Hang in there - like WinterStorm said, at least those two markers were negative.

    Sarah 

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  • jdeking
    jdeking Member Posts: 408
    edited October 2011

    When I read your original post, I immediately thought "Grave's". Don't settle for just the TSH - insist on free t3, free t4, TSI, and the antibodies TPO and TGAb. Sometimes the binding and blocking actions of the antibodies to the thyroid can cause your TSH to remain 'normal' but you still feel terrible and your other levels can be way off. I'd insist on an ultrasound of your thyroid too, just to rule out nodules or cancer.

     I went through similar symptoms, minus the hunger, and turned out I had developed Hashimoto's and now am on synthroid and feeling much better. I was also so worn out, dizzy, bowel problems, etc and felt my quality of life was just dwindling away. Thank goodness my new onc recognized the symptoms and sent me to a good Endo.  Good luck to you!

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  • apple
    apple Member Posts: 7,799
    edited October 2011

    if it makes you feel any better.. JFK had Grave's disease.

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