Painful lump between shoulder and neck and tingly arm now

wallan

So... new symptoms.

I have a sore left shoulder area - in between my neck and shoulder is a painful lump. My arm feels heavier and weaker and I get pins and needles in my pinkie and ring finger on that side from time to time.

I am assuming its a muscle knot, or damage from my mastectomy/reconstruction. Its just weird that it shows up now. Of course I am obsessing about it.

On top of this, Arimidex is kicking my butt I think. I don't have joint pain, or hot flashes, but my GI is a mess. Heartburn, bloating, a bit of nausea from time to time and the poops from time to time. I have a great appetite. I am not fatigued. But the GI thing is a real drag. I am taking PPIs for excess acid and it helps but not with the bloating that comes and goes.

So, I guess I need TLC from you guys. Has anyone else had the sore shoulder thing with the tingly arm thing?

wallan

Lexica

Hi, wallan - sorry you're going through this. I have had a lot of neck and shoulder pain and tingling in my arm on my cancer side that my PT has deemed to be side effects of radiation and the tissues pulling on my ribs causing havoc really, but mostly increased tightness in my neck and shoulder muscles and some pinching of nerves. Occasionally, I'll get a tight muscle 'lump' but I can tell from the location that it is just muscle. Can you see a physical therapist? I still see the lymphadema/PT at my BC center.

wallycat

There's a nasty bug going around that causes the exact GI stuff you describe. Seems to last forever. Not sure there's anything to do for it but time. You can try DGL and it soothes and coats the GI; may help with the gas/bloat.

I notice that how I sleep affects my tingly arms/hands. The arimidex could be causing some joint issues in your spine and you're getting a pinched nerve. At least that is what it sounds like.

I'm so sorry you are going through this. I've had the GI stuff (so has DH) and it is no fun. PPIs have a ton of side effects; if you can get yourself on pepcid, it would be better for your overall health. It is also a type of antihistamine, which I know you were having allergy issues so may also help there.

(((((((((((Wallan))))))))

wallan

Thanks Wallycat.

Pepcid is an antihistamine? That may be useful. The hives have calmed down but are not gone altogether. I take Reactine or Claritin every two days or so when they flare up. So the antihistamine helps. And the GP has me on wait list to see allergist now.

I wonder if my GI is due to allergies too. GP says no. Maybe it is a virus my GI issues.

Maybe I do have pinched nerve in neck from the Arimidex.

HUGS back.

wallan

wallycat

Yes, the pepcid is a type of antihistamine. It also doesn't (typically) cause the rebound heartburn when you try to come off of it and it also doesn't thin bones nor contribute to dementia risk (oh joy!). It is also more immediate and probably cheaper to take.

The DGL can be ordered on line; I've yet to find it at any drugstore on the vitamin shelf.

And yes, depending on what you're allergic to, it could easily contribute to GI distress. And you could also be developing new-to-you allergies...gluten? soy? milk? seafood? Isn't this fun?!! NOT! Just from what I'm reading on line, I'm leaning towards a bug. Still, even the antihistamines you've been put on might cause a delay in allergic response. Never ends, does it. I also know that some people on Zyertec (so why not claritin) get a horrible itch/withdrawl response when they stop the meds, so if you are alternating, that may be just enough to contribute to some unidentified crap.

Try sleeping on a different pillow for a few nights and see if that helps or does something different for you.

Falconer

Hey, Wallan, so sorry you're feeling lousy. I too have similar symptoms in my neck and shoulder. I was finally recommended by my BS to see a cancer rehab specialist after trying everything else. Is there someone like that in your area? I'm in NY and will travel toNJ to see him at the end of this month. ❤️

bevin

I have similar issue though my lump is more near shoulder blade area anout 3 inches down from neck. I get trigger point injections in my shoulder and down the blade every 3 months. This is done by neurologist office. Helps immensely. I believe they use a combo of steroids and pain medication.you might want to check out options like that. Good luck to you.

KBeee

I have a lot of numbness in my hand which drives me crazy! I have seen a shoulder specialist too. They seem to think the shoulder pain and numbness are unrelated to each other...they suspect numbness is radiation damage and shoulder pain is an "old" injury. I am guessing all of mine is related to radiation, but hoping you get answers for yours.

wallan

Hey Kbeee:

Funny thing is, I didn't have radiation on this side.

I see GP next week so I will ask. If I but a compression sleeve on it goes away.

Maybe its lymphedema.... I have no swelling though.

wallan

KBeee

Symptoms like that are so annoying!!!

wallan

I can't believe I am having more symptoms... I think and hope its from the Arimidex side effects.

I have had dry lady parts.. no biggie really, I just treat with Replens. But lately, a turn for a worsening condition has developed.

Not only do I have constant burning pain deep inside, that even Replens irritates, I have bleeding. The thing is, I had a complete hysterectomy and oophorectomy first bout of BC so its not coming from my uterus or cervix. I have no urinary issues.

The bleeding is bright red with a few clots but its not alot. Just enough to worry me now. I will go see my GP tomorrow since this started Friday. It also hurts more if I walk for too long.

As for the tingly arm and lump - the tingly arm is really helped if I put on a compression sleeve. In fact, it clears up. If I wear a compression sleeve for a few days, then take it off, all symptoms gone. The lump has gone down too. Yeah!!

Sigh.... I really really am hoping the symptoms are SE. I can deal with that.

Anyone else experience this?

wallan

KBeee

The good news on that compression sleeve symptoms is that they are likely caused by lymphedema and not cancer; my MO always stresses that cancer symptoms do not come and go; they come and stay. I have to repeat that to myself often.

The bleeding is obviously something that needs to be assessed and addressed. Hopefully there's an explanation and easy answer to it. How frustrating to have symptoms like that. Always is so scary! Let us know what the doc says. (((HUGS)))

wallycat

The vagina without hormones becomes very friable and can easily bleed. At some point, moisturizers, no matter how good, may be ineffective and you may need to try vagifem or e-string therapy. Since you have no uterus, I'm assuming they took the cervix too....pain plus the bleeding convinces me it is atrophy that is worsening. I'm so sorry you are dealing with this.

wallan

Hi ladies:

Thank you for your responses.

Wallycat - I have looked up vaginal atrophy as I suspected this. How bad can it get? Do you know?

wallan

wallycat

My sister had a friend who (just natural childbirth hormone changes) had it so badly that if she walked, she would bleed.

wallan

Wow. I just called my MO office and my GP office.

The MO office said it is NOT from the Arimidex and to go see my GP. I asked the nurse practititioner if the bleeding could be due to low estrogen and vaginal atrophy and she said "maybe". But highly unlikely. Huh.

The GPs office said I could get in to see my family doctor next week.

The bleeding has stopped now, but I am sore deep inside. I am incredulous that that my MOs nurse dismissed the whole thing as not an Arimidex issue. I am stunned about it.

wallan

KBeee

The "it could not be from my treatment" syndrome is pervasive in so many aspects of our care! Frustrating. We aren't blaming them; we're just asking that the symptom be evaluated. Ask your GYN. He/she would be the expert on that.

wallycat

Wallan, I think you are a younger gal and the radical hysterectomy put you in instant menopause; add to that the arimidex...your providers must not have pulled up your chart to see that you'd gone through the surgery?? that is my only "forgiveness" on their ineptness.

https://www.webmd.com/menopause/qa/how-can-vaginal...

https://my.clevelandclinic.org/health/diseases/155...

https://dailyjournalonline.com/news/opinion/advice...

perhaps you can print some of these and leave them on their desks. Good grief. No wonder patients hate medical "professionals."

Kbee, I am blaming them! To dismiss it out of hand is unforgivable, especially to a patient who has had cancer and is doubting everything they trusted their body to do.

wallan

Thanks ladies. I did get in to see my GP after I called and pleaded with the triage nurse to get me an appt today.

My GP said yes, it is atrophic vaginitis and took a swab to see if there is an infection. He said it looks very red. He will call me if there is an infection. He said the vagina is very sensitive to estrogen and being on the Arimidex is triggering this he feels.

Then he said the treatment is estrogen but I cant have that so there is nothing he can do. I asked him what I can do to relieve the burning pain (started to hurt when I walk or lie down) and he handed me samples of Festiva vaginal moisturer to try (which I have already) and told me to keep using Replens if Festiva doesn't help. Which I do anyways.

So, I have a feeling this atrophic vaginitis is progressive. I hope the moisturizers keep it from getting worse.

I see my MO nurse practitioner Dec 21 for my check in.

Maybe I can try a naturopath approach.

wallan

wallycat

Some docs (mine included) believe that vagifem or estring is a limited amount of estrogen that doesn't get full body absorption. She won't "let" me use the premarin cream; says that is too much but that the doses and delivery of the other 2 are perfectly fine for breast cancer patients. I know many gals here have gone that route because of quality of life. My sis had a radical hysterectomy and immediate UTIs from it; had to use the cream otherwise she would get clots of blood from the UTI and they would come 1 or 2x month...she had ALH (found incidentally on a breast reduction). Putting it out there since uro-genital is often how things begin to present.

Good luck.

bevin

my Gyn and blessee ny Oncologist allow me tonuse Vagifem. It is estrogen and staus kocal to the tissues. Its been a god send.

wallan

Had MO visit yesterday.

My issues are:

1. lymphedema in both arms - I am having an ultrasound though to check for blood clots or tumors but mostly likely my arm pain on left side and neck swelling and pain and swelling on right side are lymphedema. I need to wear compression sleeves and go to a lymphedema specialist. Merry Christmas to me....

2. Abdominal pain, gas, heartburn: Arimidex. I was advised to continue to take PPIs.

3. Insomnia: I was advised to take Arimidex before bed and eat pumpkin seeds before bed or take melatonin. For some reason, doctors will not prescribe me sleeping pills. I get 4 to 5 hours of broken sleep a night.

4. Vaginal atrophy: lack of Estrogen. I am to try Replens every three days and K-Y jelly on top of that every day. Because I have vaginal bleeding at times, MO may send me to a gynecologist. No estrogen rings allowed. I don't have a uterus, cervix or ovaries so.....

5. Dry, itchy, sometimes hives skin: Arimidex and estrogen loss. Creams, antihistamines.

At least I am still NED. It will be 2 years Jan 24th since last dx. It is amazing to me how I am still fatigued and lack of stamina after all this time. I don't think its all Arimidex. Getting BC second time really screwed with my mind. And of course, my checkup visit yesterday triggered massive fear of recurrance. I HATE BC.

MO said I will keep seeing her for at least 5 years and then we shall see what to do... in other words, continue on Arimidex. I have a friend who was dx with BC at same time as me and has same MO. She was stage 2 with micromets in one lymph node and had rads and on Arimidex. The MO released her to her family doctor now. I thought for sure that would be my fate too... but no. I guess they are keeping me at clinic because this is my second bout of BC. I feel more secure in that.

Happy Holidays everyone

Wallan

wallycat

Wallan, NED is still a good thing to write, despite the aggravation of the other stuff.

Interestingly, one of my neighbors now has the horrible reflux/GI issues that have been going around. I still think it is viral and possibly more sensitive with meds.

Did you ask if you could take over the counter sleep aids, like benadryl? It is also an antihistamine.

Interesting that your friend's onco "discharged" her. I have been seeing an oncologist annually as "routine" lo these 11+ years. I've never asked if I could see just a "regular" doctor and since I adore my onco, just keep going there.

Not to argue with your onco, but many gals here use vagifem or estring and many oncologists consider it quality of life. I can only imagine how painful that is. I use olive oil and coconut oil as needed but my gyn-nurse said at some point, that will simply not be enough, so I will be prepared to face a similar issue.

Merry December.

KBeee

People on Tamoxifen are more likely to be prescribed vaginal estrogen because it blocks the estrogen rather than making sure you do not produce any. I know my MO has told me absolutely no about vaginal estrogen too...for the same reasons...recurrence and cannot switch to Tamoxifen. It sucks. I have horrible sleep issues too. I asked for a weighted blanked for Christmas. I doubt it'll work, but I'll try anything!!! For my heartburn/reflux, I take Zantac. It reduces, but does not eliminate it. I seriously could have written your post; I have so many of the same symptoms. Hoping you get some relief.

BCat34

Replens never worked for me and honestly made a horrible mess and increased dryness and bleeding after which affected my entire well-being as a survivor in my early 30s. Vagisil Prohydrate is the only thing that worked for me and it is estrogen free.

wallan

Hey Ladies:

Thanks for all your input.

BCat34: I am going to try Vagisil Prohydrate. Thanks for that. I find Replens really stings and it is a mess.

KBeee; Sounds like we are on a similar path symptom wise. I too have asked for a weighted blanket. I would LOVE one. They are supposed to help with anxiety too. I have started taking Zantac these last few days and it does help somewhat. As for sleeping, I am constantly tired and can't sleep well. My sister-in-law was dx with BC last year. Stage one, triple positive. No nodes. She is on Letrozole and she just finished herceptin treatment. She also had rads and lumpectomy. Her MO prescribed her sleeping pills and told her just to keep taking them because women with BC do suffer from insomnia. So she says she gets wonderful sleep. I don't really understand why my two MOs, the nurse practitioner and my family doctor say sleeping pills are not good and they will not prescribe for me. Yet, my sister in law is advised to take them. I also have a friend who is a doctor and she doesn't understand why my medical team will not prescribe sleeping pills for me either. I am conflicted about it myself. I don't want to be dependent on sleeping pills, but at the same time, little sleep affects so much like my mood, motivation, stamina. Maybe you need to take more of the sleeping pill as time goes by to sleep if you take them all the time?? I may try Bendryl - thanks wallycat.

Happy Holidays to you all! We are all kicking at least.

wallan