Nightmare...Will it ever end?

Charz
Charz Member Posts: 48

I have posted about my issues this week on another post, but posting again because I am having a hard time dealing with all of this... I am wondering how you all deal with this fear of breast cancer. I feel it is eating me alive and taking away from my quality of life. I am so scared I am going to die leaving my child. This past week I have been drawn back into the terror that is breast cancer following a six month visit. I'm finding it difficult to deal with at the moment and don't know how I'm going to get through the next few days or week.

Before this thurs. I was happy and honestly hadn't really thought about breast cancer for a long time. I could honestly say I had moved past it and was loving life again. I felt cured with a small tumor and a low oncotype. I am almost 2 years out now (in 3 months). 2 years is the magical time frame in which most bad things happen if they are to happen apparently, and I haven't made it yet. However, I still had such hope. Now, after abnormal blood test results, its time to wait to find out the causes, and I'm thrown back into this terror-filled nightmare.

Looking up the causes online led me to discover that sometimes blood result issues like mine can be caused by bc spreading to bones/bone marrow. Can this be? i ask myself... and I am so frightened. I am also so angry because i had a low oncotype and was told not to do chemo. Is it possible for such a low risk cancer to be so aggressive? How do i survive these next few days? it feels like unbearable stress.

another more medical question: as far as the blood results, they have fluctuated over the course of the year since last september 2013. I had one normal result in between on march 2014. A really low result in january and now a higher but still below normal result in july. does anyone know if malignancy is the cause, would these values fluctuate. over the course of the year, wouldn't it have progressed and gotten worse?

THANK YOU.

Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2014

    I'm not sure it will end for Us. I remember a saying a fellow bc sister told me. We worry about things that might happen and most of the time they never do. You can't make yourself forget or stop worrying,  your brain has to decide the problem can be put on the back burner. Time will help.

  • Sparkle2014
    Sparkle2014 Member Posts: 139
    edited August 2014

    Hi Charz, it could be maybe that the news of the abnormal blood test recently just really caught you off guard when you had been in a very up - life is good mood, and maybe you just seriously need some support from these boards and people who are in the same boat as you are letting you know WE ARE HERE to help you...

    If I could suggest anything right now - it would be to say - try not to project anything, try not to especially project negative what if's - attempt really dig deep to find that inner core strength that we all have that tends to take a back seat when we hear shocking/worrisome news - (it is a natural fight or flight response) breathe in calm and breathe out worry - do this for about 3 to 5 minutes sitting peacefully and comfortably and chant too "I will be fine, Everything will be fine" 

    be KIND to yourself, it is normal to be worried, but try to think positively

    if you don't mind me probing, since I haven't started having blood tests - what is it in blood that they tested you for that appeared abnormal?

    I get really emotional and tearful and worried more so about 8/9 before getting my period - it has been like that for over 10 yrs - (I think it is called PmDd - just severe PMS with lots tearfulness and mood swings and very irritable and not able to feel like I should be)..  wondering maybe you are PMSing??

    I can relate to the constant WORRY and can't turn it off - that has been me for 2 months.. since my diagnosis - I was good for my initial diagnosis and before surgery - actually was better then - vs now - now I have had the RT MX and the expander pocket is in and left side is my natural breast (thankful I have one of my own!) but the RT side is still very sore and I have a bad rt shoulder so I get very worried that the surgery may have caused some permanent pain issues - not sure yet - so I was TRYING TO NOT TAKE ANY PAIN MEDS just to see how I do and had only been taking one vicodin 5 per night when the use of all day life would finally make my right side throb - and it helps but when I stopped then I was feeling the pain all day and that was giving me more anxiety knowing this really is very painful,,,  so I just decided to try XANAX for past 2 nights - tiny tiny dose (half of a .25 mg tablet - that is really very low - many people take .5mg every night at least) but I have bad tolerance to pills so usually taking half what DR prescribes is enough for me - I have small bones and 120 lbs so I feel some doses are meant for someone maybe 20 to 40 lbs more,,,

     

    my point is that I have had extreme worry that has developed into major insomnia for 6 wks since surgery - I had been given Valium to help relax the chest muscles so I could sleep however I never had that pill ever so I chose never to test the waters and try it  - I did have tried Xanax last year so I knew ok I took that pill before and I did wake up next day (LOL)  and so this week feeling utterly exhausted and so worried about this future and PMSING BAD and feeling inflammed and soar and I decided TRY the Xanax and sleep - and it did really conk me out - but I felt off the next day - so tonight no pills - maybe TRY it again and see if was the pill or was it that I ate a bunch of peanut butter pretzels and chips and was that a bad combo wth the Xanax - so back to my point

     

    you can ask for Xanax for worry and to help calm you down - that is a common RX for many women on here or you can practice some of the breathing and chanting and mind over matter - - or you can go outside and do something to get mind occupied - or go walk around a TJ Maxx or Marshall's or Walmart and IMAGINE all the things you want to do around the house to spruce it up or brouse and get mind off the situation - retail therapy works for me - even if I don't or can't buy anything.. 

    my old boss was into spiritual healing and she said write down all your worries on pieces of small paper and put them in basket and then have a bonfire and burn them - to destroy the energy in that thought - be careful though - I don't wish you to burn your house or apartment down.. (an alternative would be to write them down on something biodegradeable - or write fear on rocks at the beach and make a pile of them and then chant that I will not be consumed by negative thoughts like these and toss each into ocean or something along those lines - throw the thoughts like that OUT to sea and walk barefoot and connect with the earth and say positive things to yourself over and over or say nothing and listen to the world,,,  I also can't even stand TV, radio or noise right now - too much chatter and so maybe having quiet or more quiet around you will soothe and calm your mind,

     

    please REST and breathe and love your self and treat yourself with extra care as you wait for your news - I hope it is just a false alarm and wish you extra support and blessings,,

     

    Mary beth

  • Charz
    Charz Member Posts: 48
    edited August 2014

    dear Mary Beth,

    Thank you so much for you kind post and wisdom. The support here is incredible and your post was very comforting. I believe I am in menopause so that definitely has my emotions going, but the stuff they found in my blood work is what is really worrying me. 

    My platelet count has been below normal 3 times now (with one normal result in between). The hospital posts all results online. After seeing this abnormality, I contacted my doctor and then received message back he was recommending seeing a hematologist. Then I researched [low platelets, breast cancer] and got info on breast cancer spreading to bone marrow. Obviously this is rare, but it says online in all of these studies that cytopenias (abnormal blood counts) are often signs of mets. 

    Now I am terrified and just plain confused. I don't know if there are other reasons that could be just as likely for the platelets to suddenly be low over the past year or if this is pretty clear that it has spread. But how can it spread this aggressively if i had such an unaggressive tumor according to oncotype, grade, hormone receptivity. And I am am just really sad and scared because it sounds like this is why I am going to a hematologist b/c doctor thinks i have bone mets or mets to bone marrow. I am a single mom and am just so scared. 

  • HomeMom
    HomeMom Member Posts: 1,198
    edited August 2014

    Remember that Dr. Goggle is not your friend.  Some articles etc are out dated. We are not doctors so we do not know all the reasons why our platelets might drop. The good news is that you are being watched very carefully and if, and this is a BIG IF, your worse fears are confirmed, you have caught it early so that treatment could help. 

    What is your next step? You said he recommended a hematologist, did you schedule an appt? Did you talk to him about what this possibly could be besides the dreaded C word.

  • juneping
    juneping Member Posts: 1,594
    edited August 2014

    my MO told me blood test is not reliable at all and it often causes patients to go into panic mode. she refused to do blood work for me. my MO is from Sloan just for reference. 

    she said BC spread to bone was the most common ones, and to brain...everytime she sees me she tells me to pay attention to any bone pains.

    just remember cancer is a slow growing decease (most of the time)....getting panic will make the situation worse if there's any and make you lose your happy time if there's nothing....

  • Charz
    Charz Member Posts: 48
    edited August 2014

    hello everyone... i haven't heard from the hospital about when to schedule with the hematologist.. they were supposed to call me to schedule... haven't heard all week... I'm thinking i just may let it wait... i was the one who inquired in the first place and then doctor told me via email that i can see a hematologist to do a work up... however, i feel fine... i have always bruised easily and so maybe it has always been a problem with lower platelets. i figure if i am alive in 6 months and have no problems then I can rest assured it is not due to bc... and if i do have bc issue again, at least i will have bought a little more happy time of not knowing...

    also, i'm not sure how platelets could rise after they were low... if it were really caused by cancer i think it would be dropping and dropping and not rising... i also found out that the range for platelets is 140-400 in some places. So two of my supposed low values would be normal if this range was used. for some reason the hospital where i am being treated has a range of 150-400. Not sure why this would be and not sure which range is more accurate.

    I also read that sometimes low platelets could be caused by tamoxifen....

    @juneping, i am  being treated there and have heard from other places that they don't conduct blood work probably for that reason.... i feel as though i could do without the 6 month visits... they don't really do anything for me when i go except stress me out... i need a refill on tamoxifen, but until i have symptoms, i feel i don't want to see the onco anymore (but i guess i need to in order to get a prescription)...

  • Charz
    Charz Member Posts: 48
    edited August 2014

    btw... these have been all my totals (in case someone is able to interpret them better than i am)... i was diagnosed in Nov. 2012... 

    sry, made a mistake above... they use the range 160-400 K/mcL at my hospital... some places use 140-400 K/mcL or 150-400 K/mcL according to the internet... not sure what the accurate range is...

    i should also mention i had a massive surgery unrelated to breast cancer on 11/2013... not sure if this was why my platelets were so low on 1/23/2014...

    11/07/2012: 192 K/mcL [160-400 K/mcL]

    1/21/2013: 161 K/mcL [160-400 K/mcL]

    4/01/2013: 197 K/mcL [160-400 K/mcL]

    7/25/2013: 169 K/mcL [160-400 K/mcL]

    9/16/2013: 154 K/mcL [160-400 K/mcL]

    1/23/2014: 122 K/mcL [160-400 K/mcL]

    **03/05/2014: 152 x 10 (3)/uL [150-450 x 10(3)/uL (different units but it is within normal on this test done by different hospital)

    08/05/2015: 144 K/mcL [160-400 K/mcL]

  • wallan
    wallan Member Posts: 1,275
    edited September 2014

    Hi there:

      Just a word of encouragment i offer. I was dx 10 1/2 years ago with stage 3 BC, aggressive, 2 positive nodes, huge frigging tumor (7.5 cm) and ER/PR+ and HER-

    Doctors at time said to me "its bad".  They assumed recurrance within the first 2 years, then they said 5 years. NOw they say nothing. Or course, I don't see an oncologist anymore. Its great. 

    I have never had a recurrance and am fine. Feel great. I was 41 when dx. 

    I had all the major treatments - mastectomy, chemo, rads, aromasin and a hysterectomy. It took me a year and a bit to get back to energy levels to do somethng productive and not be so despondent after treatment. And then with faith and one step at a time, I rebuilt my life, got over the depression and anxiety, and I rarely think I am going to die from BC anymore.  So it can happen to move on and thrive!

    Hugs to you and thinking of you.  

      

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