Newly dx

Hello,

I am newly diagnosed. They accidentally found it on routine mammogram. I had skipped  mammograms for 3 years due to my high copay, mammals free with my insurance but after 4-5 follow up ultrasounds yearly to be told I was fine, I changed jobs. Here in America premiums and our copays are outrageous for the past 3 years. 

I don't have breast cancer, until the pet scan they will have no idea where it is, just metastatic carcinoma spread to axillary sentinel node. 

I am having a port placed today, oncologist booked out for 2 weeks except for established pts. We only have 2 here unless I travel 3 hours. I am frustrated about this. We have Dr A or Dr B, they've been vacationing and are behind.....

Well I have been on a 2 years journey with much PCP anyway trying to find what causes my itching, pain in my right side front to my back. I even tried ER  and demanded CT  X-Ray and complete blood work up. Sorry mama, we can t see anything that could be causing your pain, as a consolation prize her are 12 hydrocodone tablets and a $1200 bill. The doctor there literally never touched me. I am quite registered nurse, I was livid.

Last trip to my PCP I complained in these terms, my quality of life sucks, I work 8 hours, go to sleep 1-2 hours after arriving home and my hubby wakes me for dinner. I said  I have been sleeping for a year, he said "Have you ever been dx with fibromyalgia?"..........I said diarrhea, itching, hives daily, pain in my right side and now 4 times my spleen has been so sore I cannot lay on that side, I do not have fibromyalgia. I can see he is not taking me serious no matter how much I do. I was going through menopause 2 years earlier and was back to drenching sweats so I ask for my estradiol back. He says NOT unless you have the mammogram. Got the mammogram and then her refused anyway.

Well without the mammogram they would not have found the Mets so I am okay with that. Meanwhile I switched doctors the week of the mammogram cause I was fed up with not being heard. But since he ordered the mammogram the results are sent to him. I refused all phone calls and finally got a call directly to my work to explain in 2 days I had to be at a surgical consult? 

That's it in nutshell, told for years I had IBS hence diarrhea, idiopathic Pruritis i.e. hives daily, basically hypochondriac for complaining about pain and a know it all for telling them my spleen was swelling and painful....and a normal 53 year old nurse who is obese and not lost a pound could not be seriously ill anyway.

I worked a hospice inpatient unit for 8 years before going to public health. As you can tell I am in the anger phase of grieving.

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    Hi Debbiem,

    I am so sorry to hear about your recent diagnosis, but glad to hear that it was a mammogram that found your metatastic carcinoma.  I kept all my appointments for the routine mammogram, but they never picked up on either of my cancers – I’ve had two within a year of one another, but I found both lumps myself.

    I am not surprised that you felt livid with the way that you were treated. I only had 11 months of not being believed and hence ignored and I found that so frustrating and terrifying.

    At one stage my oncologist wanted to section me because I told her that life wasn’t worth living as I had that week. She then told my husband that she had heard me threaten suicide and said that she was duty bound to get the in house psychiatrist to section me.

    We both denied this strongly. I pointed out that life wasn’t worth living because I had buried my best friend with bowel cancer on the Monday and on Tuesday, Wednesday, Thursday and Friday I had spent most of my days in hospital for various appointments. Basically all I was doing was complaining about the quality of my life.

    That was a very scary threat and it took us some time to talk her down. I then changed hospital to see another surgeon and a new medical team. What a difference that made! The new surgeon immediately found the lump in my other breast that I had been telling my original surgeon about. Where I was told that there was nothing to worry about in the first hospital, he found the lump that had been worrying me straight away.

    There was a lot more about what happened at that time. I am a strong person, but I began to wonder if my oncologist was right and if I was going insane. The treatment I had was abominable from the cancer nurses as well as the surgeon, so I was quite relieved to move on to another care team in another hospital.

    I have worked in one of the professions allied to medicine for over 50 years, so do have some knowledge of what should have been happening but like you I was unimpressed!

    I hope that you get on better with your new doctor – It must be very difficult for you when you only have 2 doctors to choose from. I have to travel a lot further to my new hospital, but I am happy to do so, as I have been treated like a person there  instead of a lump of meat, like I was at the last hospital.

    I do hope that all goes well at your next appointment

    Remember we are always here to listen and support you as needed.

    Kind regards,

    Jolamine xx

     

     

     

  • I just got my port put in today . My surgeon said the pathologist ran more test on the cells and they responded to estrogens and progestin. She did a manual breast exam. She is hopeful it my indeed be breast cancer not detected by mammography as that would give my a much better prognosis if the metastases were not too wide spread. Good news but until pet scan really only a hopeful theory. I am on pain meds now so might not be making sense. Thanks for replies, you know how difficult this roller coaster can be to discuss with your love ones . It is easier to discuss with someone isn't so emotionally involved to understand emotions that go with a cancer diagnosis . Thank you , I will now go look at your profile and see what you're dealing with. Sincerely, Debbie

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    Hi Debbie,

    That's you a step further forward then. I'm quite used to the side-effects of medication - I've had them for 6 years. Here's hoping that it is breast cancer, even if it is the lesser of two evils.

    Being able to discuss your worries with a stranger who ihas gone through what you are going through, is so much better than discussing things with loved ones and distressing them further.

    Will be hoping for more good news (hopefully), when you get your results back.

    Take care,

    Jolamine xx