Calgon take me away.....test or not to test.

[linn65]

I have a couple issues and the first one I was working on stay calm it will go away....about a month ago a bump appeared about an inch below my clavicle bome and slightly to the left of my sternum. Well, having diep flap August 28th I thought maybe I did a little too much and this is inflammation, so I did nothing.

7 days ago today my right ankle and the top of my foot started hurting. It swelled on the top just a tadbit, but I can't see anything visually. Each day got worse, and I started walking with a limp because it hurts. Randomly, out of. No where a quick, sharp pain will go thru my foot, and I feel like a person with Tourette's and I grimace for a brief second (embarrassing, but only happened last night a few times while visiting with my Dad in hospital).

Those are my two dilemmas.....my sisters and niece said you need to get that bump checked. The bump feels like a hard knot any I would say the size of a quarter. The final decision in calling my ONC was I couldn't forget about the pain in my ankle, so I figured the right doctor to call was my ONC.

Nurse Ratchet the ONC's nurse...and I haven't cared for her from the very beginning because she just isn't really nice but in the grand scheme of things this year she wasn't that important to me, so I chose to to tolerate/ignore her.

I wanted to talk to my ONC doctor but never got a call back. Nurse ratchet called for him and I told her the above and she said I will call doctor and call you back.

She called back and two tests next Wednesday: on my ankle they want to do electrocardogram (sp) I said and why is that of course.....she said to check your arteries in your ankle because of edema. I told her it wasn't Edema because I had that the left two weeks when I was pregnant and it didn't hurt just fluid. She said oh I had edema and i could barely walk. I said idk what to think maybe its neuropathy from herceptin she said oh no that is out if your system. My last herceptin's was on August 20th, and I just keep thinking what the heck is it. Then she said it could he tendinitis, and I said really ? In my head I was thinking I have only know athletes to get that from repetitive motion over a long period of time. So, I Am. Thinking this test is worthless.

Next , text is a super sonic ultrasound on my lump. I asked no questions about that and she scheduled them.

Next day, my sister said why don't you ask her to do a petscan. I thought about it over night, and I thought that is one test and assumed (big mistake)it would cover me head to toe, peace of mind, I would never ask for another test about cancer unless I was lying on the floor convulsing. But I am sure nurse ratchet would say its epilepsy....I called her explained all my rationale for it and she said NO. Then proceeded too tell me insurance won't pay for it with no symptoms. I was trying to be really nice and convincing her to find away to do the petscan. After,20 minutes on the phone I gave up and I said okay for the two other tests.

Now, today I thought maybe that lump is smaller and it's inflammation, so I should wait. Then I thought is my ankle better....maybe it is. I got up took a shower and was hobbling after I got out. But I just feel this test won't give me an answer...however, back to I can't ignore the pain oh and nurse R did say I am sure it isn't bone cancer because it rarely comes there... I jokingly said well it seems I have been rare this year.

I want to switch ONC's now because the few times I have dealt with her she doesn't hear me, does not seem to care, and I just think she doesn't like me. I don't want to feel vulnerable with her and I have no power over my own self. But I can't switch now because I think I need immediate attention.

Randomly too I went to get my port flushed and drove 40 minutes, and because the chemo nurse punched out already it would now be overtime and they don't allow it. I understood, and I said is it okay if I just have it done in January when I see ONC and she said that's fine. Then said some people wAit a year...I was going to tell her about the bump/ankle thing, but I left. And all I could think was if I could have waited until January why did I have to come today. I have no idea what standard or care is for my port.

So all this week I went back to work on Monday and everything seems to be a mess and working on getting it done. But at times hard to concentrate. My Dad had a stroke after just going thro open heart 4 months ago and he has been in hospital since last Saturday. However, he is sound really good. And then all this trying to get a petscan but nope.

I sit and stare today but haven't done anything. But take a shower and wonder should I do these tests....I don't want to make one more decision.....

Whew....

[Becky]

The ankle thing is probably a bug bite that you can't even see - think its one of those random non-cancer things but you may have to look into it at some point if it doesn't get better.

The lump thing is probably nothing too but does need to get looked at right now so it is good you are getting an ultrasound. My recommendation is DON'T touch it at all anymore. When we get a lumpy/bumpy, all you want to do is touch it and that just irritates it more so it can't heal/drain whatever. You know how big it was so don't touch. Not at all. NADA. The day you go for the test, when you are showering - give a feel. Your fingers will remember and you will be able to tell if it has changed. It will probably be smaller. No rubbing and touching. No, no, no

I agree with you that you are right about not changing doctors this moment but you just might need to because he uses this nasty nurse as his defensive end. I have a doctor who will call me directly and has when I was in treatment and the first year out when you think about everything. Remember, these people are folks you hired to make you well and save your life. They are your life saving employees and you can certainly fire them and hire another at any point. But get through this ultrasound (and get a copy of it) and see what's up. Certainly if you don't like what they say, a second opinion is in order.

Get that hand away from that lump girl!

[CoolBreeze]

Sorry about your Dad.

Cancer almost never shows up as a recurrence in the feet, ankle or under the knee. So you likely don't have to worry about that. It definitely sounds like a skin invasion of some sort, maybe bug bite (my son just got bit by one that swelled his eye shut and he needed antibotics to control, cellulitis)

Herceptin isn't know to cause neuropathy but even if it did, that isn't the way it presents so I think the nurse, rude as she is, is right.

Why is the nurse deciding? Isn't a doctor going to look at it first? It could be something to do with tendons or inflammation - I've had a chronic problems with my shoulders because of that. That doesn't mean that is your issue but it isn't something to completely dismiss.

Why not call your PCP? An oncologist is going to look for cancer and its side effects but your PCP will look for anything that could cause this - he won't be so focused.

We have to remember that just because we are cancer patients, we can have other issues too! Maybe has nothing to do with cancer.

And yes, if you can't get through to your Onc and have to always deal with a nurse you don't like, you should switch oncologists. It's a relationship that can span years and unfortunately, I see mine monthly or more often. While I hope for you it doesn't end up that way, it's one where you really must feel trust.

Oh, and a PET is not the solution you think it will be. First, it only shows cancer that has grown to a certain size and it also has a lot of false positives. LIke all these tests we take, it is not perfect and can sometimes leave us with more questions than answers. So I would probably not go there if I didn't have to - take your bumps and pains and see what happens locally first.

Becky is right - NO TOUCHING!!!!

Let us know what happens!

[linn65]

I think I just figured it out.DVT....deep vein thrombosis.

[Becky]

Then you need to go to an emergency room immediately. Really! Please go.

[linn65]

I can move my toes up and down and put my hand on top of foot, and I feel a vein in there squeaking. Menopause, chemo, tamox and cholesterol can cause poor circulation in veins in ankles and it causes pain. I think it does have something to do with circulation, because two days ago my. Knees looked weird and swelled, red, and then it went away. I will put a pic up.

['lizbeth]

I was told to get my port flushed once a month.

The ultrasound is a great idea, and I still am betting on necrosis from the DIEP. Your body can absorb some of the dead fat cells (necrosis).

Call the PCM and discuss your foot. If they think you need to go to ER, then go. Stop procrastinating or I'm going to call your sister!

[linn65]

My foot feels kind of better....however my hands just like my feet our Ice cold. I took a hot bath to warm them up. I have wrote all day in my journal, and I wanted to write more but my hands start hurting. Today, was an awesome day. My Dad is doing much better.

I know when all of this started I wondered at times if I could make it to the other side of this. And today I found hope, happiness, returning purpose. Today, mentally and emotionally the tides have started to change. Now, if my body would, get there too that would be utterly awesome!

The lessons I have learned as I am sure everyone on this board have as well are priceless, and I don't know if I have figured it out before. Cancer forced me to understand what happiness is....and self compassion isn't self indulgence! So many things and today I am feel blessed.

[Jackie07]

Glad your Dad is doing better.

The 'ice cold' issue could be neuropathy or simply being anemic - especially both your hands and feet feel the same way. I'm sure you have routine blood panel done and will be treated for anemia if the number is low. Try to walk 30 minutes everyday. The nerve cells are being connected by electric impulses. The more we exercise, the more jumping over. And little by little, all the nerve tissues will get back to normal.

The reason why your oncology nurse / doctor had scheduled you for an electrocardiogram is because reduced heart function could cause fluid not being pumped back to the heart properly, thus leads to swelling. I had experienced that after my 4th TCH and the doctor ordered an EKG. No, they don't like to explain it to us, I had to look it up and figure it out. My heart continued to be affected by the infusion, and so the Herceptin part was given 'weekly' (so the dose would be smaller) and I stopped after just 4 weekly treatment.

Hope everything gets back to normal soon (if there's such thing called 'normal' . Sending you good vibes.

[linn65]

Does neuropathy come and go like that ? I sure hope it's anemia that would be an easier fix. I have lost quite a bit of weight after the diep flap surgery so anemia might be it.

So maybe I should just make an appt with my family doctor for it all. And not go to ONC's office Wednesday.

What is necrosis and where does it appear, and how does it feel.

[Jackie07]

Always keep your oncology appointment. These are treatment-related issues. Your team will know best what to do and do it much faster ...

There are some previous discussions about neuropathy. You can find them by putting 'neuropathy' into the 'Search' window (click 'Search' on the maroon bar on the top panel) Here's a recent one: http://her2support.org/vbulletin/sho...ght=neuropathy

My experience is that 'Exercise' is the best medicine besides what the doctor prescribes. Daily 30 minutes walk does wonders!