Why wait?

Jennvo · March 2018

Hi All!

First off I have to thank the discussion board and all the women who have posted. It's like a warm blanket when I really need comfort. All of us know how it feels; not knowing what is going on trying to keep it cool and moving along with life.

My story at the moment is, and I hoping others can relate, I'm experiencing a combination of pins and needles in my left arm and fingers, and dull pain in my armpit that occasionally radiates to my shoulder and left side of chest (no longer a breast :-/). It's been going on for the past few weeks. I visited my MO about a week in and she said she did not feel anything amiss in the exam. I was due for my annual MRI, but it had to be postponed due to a mistaken diagnosis of shingles that turned out to be dermatitis, and has cleared up since. Now I'm waiting for the right point in my menstrual cycle to get the MRI, and it's being fussy this month (peri-menopause, of course).

My original dx and treatment was for DCIS, hormone negative, comedo, yada yada, that pretty much took up my entire left breast. Big 'ol bad boy!

I'm sort of assuming that this is some sort of regional recurrence based on the Komen web site description. There it explains that the doc will order a CT or PET scan. But, perhaps the MRI is the first choice because my right breast needs a look see as well?

Anyhow, does anyone have a similar story to relate? I'm hoping for company, and advice as to how to advocate for myself.

Thanks so much for your help :-)

Jennvo

bevin · March 2018

HI there Jennvo, pins and needles and pain in your arm like that can be from cervical issues such as a pinched nerve at simplest up to a mildly herniated disc. It is very possible this is nothing to do with cancer. Have you tried doing some neck stretches and things like that?

Jennvo · March 2018

Hi Bevin, As a matter of fact I do have degenerative disc in my cervical area. Gee I hope that's what is causing this. Thanks for the feedback!

KBeee · March 2018

Yoir doctor can order EMG which will pinpoint if it is cervical, carpal tunnel, cubitsl tunnel, etc

Jennvo · March 2018

Hi KBee, I looked up EMG test. I'd never heard of it before. Thanks for the tip. I like having a lot of information and this is really really helpful.

I sort of waffle between wanting tests and not wanting to go there at all. I'm an expert at detaching it seems, although it can really come in handy sometimes when my mind goes to places it shouldn't.

BTW: is the beee in your alias for honeybee (yellow shirt in picture too). I'm a beekeeper and I'm really getting excited to see the busy girls in the spring.

dtad · March 2018

EMG is like an EKG but of the brain

KBeee · March 2018

My maiden name began with a B, and in college, they always called me KBee! I'm not a beekeeper, but am so appreciative to you, and all the others out there; so important! My oncologist is actually a beekeeper; we spent half of my last appointment talking about that!

I've had EMG done 3 times now. It does give helpful information about where hte numbness is coming from, and if it is affecting the firing timing of muscles.

Falconer · March 2018

Hi Everyone,

I just had an EMG this past Tuesday and follow up w pain management Dr on Wednesday. KBee, I'm so interested that you had three of them! I was so confused by the test. What the heck actually happened? All the neurologist said was that I don't have carpal tunnel. The test was ordered bc of neck and shoulder pain and tingling numbness on bc side. I had a cervical spine MRI which was "clean" (doctor's words) so this was the next test ordered

Jennvo · March 2018

My MO called this morning to tell me I am scheduled for an MRI on Friday. U know the feeling...relief to be moving ahead, then anticipating the results... I'm going to bring up the EMG after since the MRI is due for the year anyway. I'll let you know how it goes...Thanks so much for answering my call for help and advice! You're the best!

KBeee · March 2018

Falconer,

I had my first one in 2013 due to sudden onset of numbness that was consistent with carpal tunnel in my left hand. That was surgically corrected a few months later, after other treatments failed to improve the symptoms. In 2014, I developed similar symptoms on the right side, so they did one then. It was both carpal tunnel and cubital tunnel. Both were surgically corrected. I now have persistent numbness on the outer side of my right hand. I went back to the ortho that operated on that side to see if perhaps scar tissue had formed in the cubital tunnel area. She ordered EMG, which showed that was not the area of origin. It was more likely radiation damage. NO one seems to know how to address it though, which really irritates me, and is #1 on my list to discuss at my next appointment!

Jennyvo, hoping your MRI is clear! Do keep us posted. I do understand scanxiety. I really do!

justamy · March 2018

I thought I was the only one who experiences this.Im going to see my GP about the hand/shoulder/arm pain. My MO just says it's nerve damage from chemo, but no tests have been done and the pain is almost unbearable at times. I wake up screaming many nights. I think my GP will be better. My MO seems to not know what's going on at all with me and when I bring stuff up, she just dismisses it. So frustrating!

Falconer · March 2018

KBee, always, thanks for responding so thoughtfully

KBeee · March 2018

justamy, definitely see your PCP. Sometimes MOs are so focused on cancer, they assume symptoms are due to something else. I still deal with numbness, and since it is likely due to radiation, MO doesn't think there's anything "he" can do. Of course, I don't see RO anymore. I am finally addressing it with another doc. If I could change one thing about oncology care, it would be for every office to have an internal medicine doctor to deal with issues such as this because nearly EVERYONE who's had cancer has either numbness, brain fog, pain, lymphedema, hearing loss (chemo for other cancers), bone loss, etc. It would be nice to have someone knowledgeable in cancer treatment's side effects to lead the charge on dealing with these issues.

justamy · March 2018

Speaking of bone loss. They have a new shot they can give to help prevent further loss. I don't know the name of it offhand, but I will find out and post if anyone is interested. The downside is that it is not FDA approved for this use (It is for other things) but it should be anytime. Indurance doesn't cover it until it is approved.Alsoyou are married and make less than $75,000 you can get it free through the manufacturer. I'm not sure what the cutoff is for singles. I get my first shot Friday. If you want it, ask your MO.

Jennvo · March 2018

Justamy, Unbearable pain? That is truly unacceptable. It's probably worth it to explore every avenue to help make pain at least bearable. I'm hoping your GP will help with this very soon. -Jennvo

KBeee · March 2018

Shot might be Prolia.

justamy · March 2018

It's Zometa. Ask your MO and they can request it if you qualify. My MO says that they are being advised to give it to all patients that have osteopenia or osteoporosis. Insurance doesn't cover it yet which frustrates her to no end. It is about $1000 a shot if you pay for it.

bevin · March 2018

I have osteopenia, is the zometa specifically for low bone mass? My fracture risk in 10 years was over 20%. Surprising. I'd consider paying for it if its that effective

Jennvo · March 2018

Just got back from the MRI so now I wait. I didn't eat anything before hand this time, which it turns out is a good idea because I usually get nauseaus when they start the contrast. This time I actually got high instead!

justamy · March 2018

Yes the Zometa is for low bone mass. It's supposed to make your bones stronger by taking the calcium in your blood that you would normally eliminate and use it to make your bones stronger. It is a 30 minute infusion-not just a shot like I thought. I'm taking it once every ,6 months. My MO says it will be approved for this use probably sometime this year.

justamy · March 2018

Also it is supposed to reduce the chance of bone Mets because it makes your bones less porous. Hope that helps.

Jennvo · March 2018

Hey All,

I got this in my email this morning:
"There is no suspicious enhancement on MRI to suggest malignancy.

:-)

I'm going to ask for the EMG next since this pain is progressing in my arm. Wondering if anyone has any advice about advocating for this test. Also, do you think an ultra-sound seems appropriate to follow up the MRI, just in case?

Thanks for your support!!

KBeee · March 2018

MRI is more sensitive than ultrasound, so I would not push for it, but for sure, do what your gut says. Your family doctor should be able to order an EMG.

smc123 · March 2018

I don't want to come across stupid but does anyone have a good suggestion as to the best scans to detect metastasized cancer? I ask because a friend of mine was in remission for six years and was having shoulder pain. She is very into working out and thought it was an exercise injury. She had an MRI but nothing was detected...after several months of pain and feeling dismissed by her doctor she pushed for a PET Scan and this revealed metastasized breast cancer to her bones. What is crazy too.. all of her blood work was normal...even though she was now stage 4 breast cancer. I had been doing really well, mentally, with my own cancer battle behind me but since my friend's cancer technically never left but was only dormant I have been so scared. My MO does not believe in yearly scans...she says the scans do not necessarily detect cancer any more quickly than just us knowing our own bodies. But, I am thinking I want some kind of yearly scan...I just don't know which one would be the best to ask or insist on. Any advice?

KBeee · March 2018

Unfortunately, most MOs do not do yearly scans without symptoms. For other cancers it is different, which is frustrating and stressful, but with breast cancer they don't. When scans are needed, they denerally either do a PET scan, or a bone scan and/or CT scan.

Hopeful82014 · March 2018

BEVIN, if you already have osteopenia there shouldn't be any problem getting insurance approval for Zometa (other than the fact that insurance companies like to create hassles). I've had not issues with approval. Nor have I had any side effects - some women on this site make it sound like it's awful but, at least for me, it's a total non-event. I'd say definitely ask you MO for it. I like it both for its effects on bone and the decreased risk of metastasis.

pajim · March 2018

Jennvo, I'd put my money down on something impinging on a nerve in your cervical spine. In theory the MRI should have found that. Did the report say anything about your spine?

Hoping the pain gets better. . .

bevin · March 2018

Hopeful, thank you, I will asl about it. I appreciate the information

Jennvo · March 2018

Pajim, I had asked my PCP for an MRI of my neck along with breast MRI and she said no, they can only do the breast. Oh well.

bevin · March 2018

what was reason they stated for not ordering neck? There isnt any rule that a orimary doctor cant order an mri of your neck. Id ask him to explain why and state you are fearful of camcer and if he cant or will not order one you should see somone who will.

justamy · March 2018

Hopeful, I was told by my MO that the FDA has not approved using Zometa for osteopenia unless there is another reason like Mets. This means that insurance will not approve it. I just got my first infusion and insurance would not pay so I got the drug free from the manufacturer. They expect the FDA To catch up any minute, but it hasn't yet.

Why wait?

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