If you are not Stage IV but have questions, you may post here

stephincanada

Denna and Pajim,

Thanks for your input. I actually have never spoken to a doctor this issue. I booked physiotherapy on my own. My physiotherapist thinks that I did something to my lower back (he never gave me a diagnosis) which is causing pain in both of my glutes. I happen to be seeing my radiation oncologist next week for a regular check up and will mention this to her.

Pajim, my issue also feels very muscular, which is why I never mentioned it to a doctor.

Hope you are both doing well and thanks again.

Stephanie

stephincanada

Denna and Pajim,

Thanks for your input. I actually have never spoken to a doctor about this issue. I booked physiotherapy on my own. My physiotherapist thinks that I did something to my lower back (he never gave me a diagnosis) which is causing pain in both of my glutes. I happen to be seeing my radiation oncologist next week for a regular check up and will mention this to her.

Pajim, my issue also feels very muscular, which is why I never mentioned it to a doctor.

Hope you are both doing well and thanks again.

Stephanie

Artista964

just curious. How much do you pay for stage 4 pills like ibrance and such. I have medicare b and d. Or is it under b like iv chemo is? What's the average out of pocket for stage 4 pills with medicare b and d? Oh, i have aarp supp f too.

Thanks!

dlb823

Rosabella, it's going to vary quite a bit depending on the meds a patient is on. Ibrance, as you may know, is notoriously expensive -- around $11,500 (retail) per month, depending on what state you're in and pharmacy used, and the problem some patients run into is that Medicare "donut hole," or the gap in coverage. Other than the donut hole, with an "F" plan, you should be pretty well covered.

If you haven't already, you may want to also ask your question in the forum that deals with insurance issues, as well as using the "Search" feature to see if anyone else has asked the same thing recently. I'm suggesting this because I think your question will get more attention if it's a new one about Medicare coverage, rather than kind of buried in this particular thread.

Hope this helps some, and here's a link to that other forum. https://community.breastcancer.org/forum/113

Artista964

thanks dlb

HelenWNZ

Hello - just popping in with a wee question.  Am I keeping my head in the sand by not contacting my specialist just because I feel dreadful.  I have no persistant pains - things that just come and go as you would expect given the nature of the beast. I am on Letrozole and Blood pressure meds both of which when I look up their side effects - I pretty much have them covered. Or have I just hit a road block after 2 and a half years of fighting and am a bit weary.

dlb823

Hi, Helen! I don't think you have your head in the sand, and chances are whatever has you feeling so dreadful isn't related to bc, but it certainly can worsen everything when you start thinking that way. What I would suggest is maybe a complete workup by your PCP (or whatever you call your primary doc in NZ), to see if anything else is amiss -- thyroid, blood sugar issues, adrenal fatigue, etc. If he/she can't find anything to fix, then maybe check in with your oncologist -- if only for complete peace of mind. But from the little bit you've shared here, I don't get a sense that you're dealing with an undx'd metastatic recurrence, but possibly something else out of whack, and possibly a touch of depression or PTSD, both of which are very common after bc tx. So I'd definitely start with (1) Making sure you don't have something else physically going on and fixing anything you do; and then (2) Looking at lifestyle changes to get your mind out of the bc rut, like spending more time doing things you love doing, maybe taking up a new hobby, planning some getaways to change the scene and ge around people who don't know and relate to you as someone with a bc history, spending more time in nature, etc.

Just my take on what you've shared, but don't continue to suffer. Make those appointments and get back to feeling good! Hugs, Deanna

WC3

Did anyone have bone mets that a PET/CT missed but a bone scan found?

I had an 18F-FDG PET/CT in May that came back negative for bone mets (I hear 18F NaF PET/CTs are more specific for bone mets but we werw looking for metastasis in general), but a recent MRI shows increased vascularity in my sternum and the radiologist recommended a bone scan. I understand doing an 18F NaF PET/CT is probably off the table because it would be too soon after the previous one on terms of radiation exposure but would a bone scan really see something that a PET/CT didn't?

I'm slated for a BMX and reconstruction soon but if it's stage IV then I would probably choose a different surgical option.

chrissyb

I recently had a PET/CT which showed a possibility of a met and was recommended that I have a nuclear bone scan. This was done and picked up a whole lot of mets that did not show up on the PET/CT.

If possible, have the bone scan done as that is best for picking up bone mets where as PET/CT is best for soft tissue tumors.

Good luck and please let us know how you get on..

Love n hugs. Chrissy

4love

Hi everyone! I felt a lump under my armpit (same side as I had breast cancer 5 years ago) last week and called my Dr. and had a CT scan done yesterday and have a ultrasound scheduled for coming monday. My Dr. said that she is very concerned about the lump and infact she could feel 2 additional small lumps. I'm very nervous and having a very hard time waiting for all the reports to come in. Has anyone else gone through this? Are these lumps symptoms for recurrence or of lung cancer?

dlb823

4love, my first thought would be swollen lymph nodes, which could be caused by a non-bc related infection somewhere in that general area. Did your doc mention that possibility?

helenlouise

4love, very scary time for you. Hopefully you will get test results ASAP so you know. When I felt my lump second time round I knew it was going to be bad but mine was in the breast. Lymph nodes come up with all sorts of infections so don't assume the worst.

Best wishes for negative test results soon.

SheliaMarie

Both times I was dx, I just KNEW it was cancer. First time was a lump in my breast, no risk factors, 31 years old. Second time was lump near my clavicle, age 40, no other symptoms.Did anyone else feel that way?

Sara536

Amica, the following paragraph was copied from parathyroid.com

High Blood Calcium

High calcium in the blood is called hypercalcemia, and is almost always due to parathyroid disease. It is almost never due to cancer. All causes of high calcium are discussed on this page, including what tests will determine the cause of the high calcium.

.........

I can’t tell you how many doctors poo - pood my high calcium before I had the one offending overactive parathyroid removed. (Most people have 4, so no big loss) The high level was noted several times but always accompanied by, “Oh, it’s just a little bit out of range.”

I think the only reason it was finally taken care of was because it was right next to my thyroid which was removed because of thyroid cancer, (I had finally found a good endocrinologist, no thanks to my PCP who didn’t want to refer even though I had a 1.5 cm thyroid tumor.) Still, I’m told, the parathyroid problem had nothing to do with the cancer. Parathyroid.com will tell you everything you ever wanted to know about the parathyroid. I always get a copy of my bloodwork and ask about out-of range numbers if they are consistantly out-of range.

I have discovered that it sometimes pays to become a pest in the process of advocating for yourself if that what it takes.

tangandchris

I have growth on my forehead that came out of nowhere in the last couple of months.

My pcp says it needs to come off.

Now I'm wondering how likely could this actually be a skin mets thing.

Anyone deak with something like this?

I know it could be nothing. But it could also be something.

MinusTwo

Tang&Chris - I would definitely see a dermatologist. Nothing against PCPs, but it sounds like you need a specialist. If they're going to remove, I would recommend Mohs surgery, where they remove the 'growth' and send it to the path lab while you are there to make sure they got it all before they stitch you up. Especially since it's on your face. It' local anesthesia but does require special training to do this surgery. I have gone to a derm plastic surgeon for 5 basal cell surgeries at the recommendation of my regular derm doc.

Below is an article about Mohs surgery from Cancer Connect.

https://mavendoctors.io/cancerconnect/treatment-ca...

tangandchris

I hadn't even considered it, but you make sense. I was honestly surprised the PCP didn't refer me to a dermatologist.

I'm going to read the link. Thank you❤

Artista964

maybe it's a lipoma? I had one show up in 3 mo. Just got it removed on tues by my bs who is a general surgeon. It was almost 3 inches long which in the lipoma world is big. Read up on lipoma, which is a fat pad.

tangandchris

It feels rough, its not smooth like a lipoma seems to be. I wish i could take a pic.

dlb823

tangandchris, I could be wrong, but I think skin mets from bc tends to show up where the original lesion was -- usually on the breast. But I agree with MinusTwo that this is something for a dermatologist to evaluate. I'm guessing it might be a basal cell or squamous cell skin cancer -- both fairly harmless as long as you catch and have them removed quickly.

Peregrinelady

I had a growth suddenly appear on my stomach. The dermatologist said either squamous cell or sebarrhea (sp?) keratosis. Had to wait a week for results. Fortunately it was benign. I almost lost it while waiting just from hearing the words biopsy and cancer again. Skin mets is very rare and “shiny” according to dermatologist.

Mama2BC

Hey friends! In 05/2016, I was diagnosed with stage II, grade B (I know my profile says A), triple positive breast cancer. I had a lumpectomy, followed by chemo, bilateral mastectomy (in 01/2017), radiation and completed Herceptin in 08/2017. I did have cancer in 2 of my lymph nodes, which were removed but have not had any issues with lymphadema. In 01/2018 I had my expanders switched out for implants and in 05/2018 I had fat grafting surgery. About 2 weeks ago, I noticed slight pain on my rib. It feels like maybe I pulled something. Or maybe bruised it. It is located on the side on my original right breast, breast cancer. It is to the right of my right breast. The pain area begins begins just below my breast, but slightly to the right of the breast. It's my 2 inches of "pain." I don't even know if pain is the right word. It's not a constant feeling. It's when I reach certain ways, or sleep on my side or when I press on it. Which, of course, I do often now because I am paranoid. I contacted my oncologist and he recommended I put a heating pad on the spot for a week. I am on day 5. Still having the sensation. Side, note, the heating pad caused me to get a little burn on breast. Oops. Skin sensitivity after radiation. This is all I can think about this week. I am not having any other symptoms or pain anywhere else. I would say I over the summer I started a new heart burn medication and noticed some dizziness and irritability and maybe feeling anxious. I stopped that about a month or so ago and the dizziness is much better. Still anxious. I've never really been an anxious person. Maybe that just comes with going through something like this. I'm sure being anxious and irritable has nothing to do with this "pain," I'm describing. Anyway, just trying to give all of you the full picture. Has anyone else experienced this? Thanks!!

dlb823

Mama2BC, most aches and pains -- which we all had prior to a bc dx, and will continue to get post-bc tx -- are not mbc. But what helped me the most was the 3 week rule. Almost without exception, most benign aches and pains will go away on their own within two to three weeks. When a pain doesn't -- or if it requires something more than an OTC pain reliever -- that's the time to report it to your onc and let them decide if it needs to be checked out.

As far as the dizziness, it sounds like that new med was to blame, especially if it's improved. But you may also want to have your onc or PCP do a complete blood panel, to be sure your counts are all okay. If they're not, it's not a sign of mets -- just could be an explanation for the dizziness. And hopefully you've addressed the heartburn by eliminating whatever was causing it, rather than needing a med.

AllyBee

Hi mama2bc. I had a similar pain, kind of right under my breast and into my ribs. At my last check up they told me it was from the radiation, kind of like scarring I guess. I've had recent scans and there's no disease there. It has improved with time. If it doesn't improve in a couple of weeks though, I would ask them to check it out. It is worth while even just for your own emotional well being.

I know every time I have an odd ache or pain I keep poking and prodding it. Then I'm not sure if I'm causing the pain by constantly touching it.

I hope you get some answers soon to put your mind at ease.

Ally

Legomaster225

I had the same pain. I went through X-rays, ct scan and they found nothing. At my annual follow up with the radiologist he said that that is a common place for discomfort after radiation. I would still get it checked out but I just wanted to pass that along.

TNMTNGAL

I have, what sounds like, the same pain. I’ve had it a few months now. They’ve done xrays and ct w/wo contrast and say they don’t see anything and that it might be just bruised cartilage around my ribs. I see my onco next month and I will definitely be asking for an mri/pet. I already have a bone scan scheduled the first week of January. I have also developed knots under my arm on the side the bc was. I saw a surgeon this week and they’re sending me to the women’s specialty center where I was first dx for an ultrasound guided wire insertion for the surgeon to take biopsies. Here’s hoping you get answers also!🤞🏻Hugs..

funthing42

Hi

Just wondering what to expect next.

I need hope. They are ready to give chemo again. Abraxane?

No Biopsy of the liver just juice me.

I want to survive. I feel like they are looking in a book and throwing their hands up figuring it might work with no analysis.

Please make sure to get regular imaging they did no imaging for 2 yrs.

Markers just went up.

Hx below I don'thave time to figure out whats going to work.

Liver 3 large 1 small

4cm largest

x 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2-

Hormonal Therapy 6/5/2009 Arimidex (anastrozole)

Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast: BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)

Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+

Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left

Targeted Therapy 2/1/2014 Herceptin (trastuzumab)

Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)

Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane)

Skin mets Sept 2015

3/2016, IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation was finished . Pet scan then revealed left lymph node involvement. Her2- estrogen + progesterone-

Ibrance and fasoldex 2yrs

It shrunk to nothing markers normal no Ca.

But now on

10.10.18 markers up

Liver mets

Lisa

KBeee

Lisa, I am so sorry you are dealing with this. It must be horribly scary. Hoping you can seek multiple opinions. Are they not biopsying the liver site? They need to know if it is ER+. and/or HER2+ so they can make sure that your treatments are appropriate. Ask to be seen at a large academic medical center. If you already are, then ask to see someone at another center. Thinking of you.

funthing42

Thank you.....I know everyone is looking for hope or the right combo with out the experimentation. I hope one day we get it.

No they are not doing a Biopsy . It seems they have it all figured out without speaking to me with direct precise analysis. Unless they know I have no options. I'm in the field and am taken back by it.

Just A quick answer more chemo.

It struck me as odd. I have cancer in the left axilla and now the liver.

I never in a million years thought It would grow to this.

So onwards I go. Philly this week for a second opion. If I don't like what I here I'm on a plane to MD anderson in Tx.

I have always have had second opinions and second reads on pathology.

Dana Farber

Sloan Kettering

Md Anderson in Camden

Fox Chase

I wish I could avoid more iv chemo been there done that it came back slightly over a month. All it did was piss my cancer off.

buttonsmachine

funthing42, I'm sorry you're in this situation. I have often felt that I might not want to do the IV chemos again either. They made me too sick, and they weren't even very effective on my cancer.

You may be able to do Xeloda, which is a pill chemo, and easier to tolerate for most people. My MO said it's the mildest chemo as far as side effects go. I'm on Xeloda now, and I can live a fairly normal life on it. My hair is even growing back! It also doesn't affect your counts as much either, which is great.

If you are still HR+ you may be also be able to do Ibrance, or something similar.

Hugs and best wishes to you. Please keep us posted on how you're doing.