Calling all TNs

cc4npg

Just popping in for a moment. I know there are many who have been diagnosed over the last year and have made this their home among friends for support. It's a great place with wonderful people and they truly will help you along the way with encouragement, suggestions, positive thoughts and prayers.

It has now been 6 years since my diagnosis. I am happy to report I am still NED.

I did have a scare a month ago, and the radiologist was certain cancer had returned to my lymph nodes. Over the course of a week, the nodes under my arm (cancer side) and along just under my collar bone became enlarged and painful. It was fairly sudden, and the nodes felt (to me) soft, but huge and very ouchy. The only other possible symptom I had was a small tiny poke from a kitten nail on my finger, which I had gotten several weeks prior. It had not healed and was actually very tender. It was about the size of a pimple, slightly red around it, and I had put antibiotic on it every once in a while and then promptly forgotten it was there. Well, after 7 weeks and now the lymph nodes swollen on the same side, I began combing the internet for anything other than the big "C". I came up with: Cat Scratch Disease or Fever. Of course, the doctors dismissed this as the culprit, so I had a biopsy of the nodes. 24 hours later, they said it was a Reactive Process - NOT Cancer. I was put on stronger antibiotics. The small spot seemed to go away, but two weeks later, when I noticed it was slightly sore again, I went to a dermatologist. After hearing my story, she "almost" did a biopsy on the sore. I was prepped and numbed for it, but then she came in and said she was going to do a Blood Titer test instead. Three weeks later, it came back high - Cat Scratch Disease.

I wanted to post this so that others who might be searching would come across my post, because I came here and searched and found only a couple of referenced to cat scratch. Cat Scratch Fever or Disease CAN mimic cancer. It can be very serious, and it can stay dormant in the system and come back later on, kind of like chicken pox. You contract it when a cat (almost always a small kitten who has fleas) scratches you. It is carried by fleas, but not all fleas. A carrier bites the kitten and then the kitten scratches the person and voila, you "may" have it. Most often it affects children more because they may play with and get scratched by kittens more often. I happen to have an extensive background in rescue and help those who find animals.

Lymph nodes have a job - to filter the blood of disease and infection. Please keep in mind that when they are swollen, they're simply doing their job and it doesn't mean cancer has absolutely returned or that it is everywhere.

Please also keep in mind, for those just coming in, that the vast majority of us who have gone through cancer and come out on the other side, go on to live our lives to the fullest extent. Most of us eventually step away from the boards here. So, when you don't see a lot of Triple Negative people who are years out, remember we are always present in thoughts. Instead of posting often, I walk among you in person. I have nothing but good things to say about the ladies here, both those I know and those I do not. You are like family.

VLH

Congratulations on the continued NED news! How clever of you to think of cat scratch fever.

Lyn

Meadow

Hello all, I have read thru the thread to catch up...whew!

Another, were you able to get an earlier appointment? I am sure you have been concerned, so sorry for your worry. I am thinking scar tissue....let us know as soon as you know. Thinking of you.

I have been busier than ever lately, and not on the boards, but always thinking of you all, you are in my heart and mind.

jenjenl

I am so mad at myself for not getting CaolinaAmys email or contact info. She hasn't been on since her DIEP surgery. I've left her so many PMs. Im worried and miss her. I've even gone to the DIEP 2016 thread to ask and no news.

Valstim52

jenjenl, same here. I've not seen her on the boards and I'm in NC too. Same with Kicks, have not seen her either. HOpe all is well.

anotherNYCGirl

Cat scratch fever! I have heard about it, but never thought how it might appear to us after bc!

Meadow, good to 'see' you. Yes, I did see the onc, - she sent me for a sono, which was ok, but wants me to see breast surgeon for another opinion. Seems odd, but ok, I'll call for that next week, As for back and hip pain, - xrays were inconclusive. If pain persists for another week or 2, she will arrange for an mri . She wasnt scaring me, so I am a bit calmer. THANKS for thinking of me. Are you back to subbing now that school is back in session?

Hoping all here are feeling well!

Meadow

Another, so glad you are calmer. No need to stress out. Yes, I am subbing, always fun. I was in a Preschool class the other day, we were having our snack, and the most adorable little guy said, so casually, " When I was a little kid...." I said, "Are you four, or five years old?" He said, "Four". I had to bite my lip to keep from laughing! So cute!

anotherNYCGirl

Meadow, - how sweet!

(I sent PM to you.)

blamoms

I am officially returning to work Nov 1. I am a full time cashier in an outdoor store. I'm looking forward to going back and getting my routine back but I am nervous also. The doctor wrote me off work til Jan if needed but she said see how you feel if you want to go back earlier. My hubby got packaged off at his company last sept and it took him a year to find a job and he is making less money. Christmas is coming soon. I am surprised how well I am feeling since finishing radiation the end of August. I hope I am not treated like glass when I go back. I'm still me just a little cancer. Hmm wonder if I can make a tshirt that says that lol

PeggySull

I just need to rant--after taxol three years ago I have suffered from the most extreme symptom of peripheral neuropathy--total numbness in my feet and numbness on the tips of my fingers. After all this time the balance problems due to dose-dense taxol are getting worse instead of better. I fall about twice a month and today I fell twice trying to do easy yoga standing poses.. I've tried all the different supplements described on these boards, suggested by my oncs and the literature.

I did get some feeling back when I did acupuncture weekly with electrical nerve stimulation but only when I had the treatments regularly. So now we've retired and moved and I can't afford the acupuncture.

I am so f----ing angry at my onc whom I learned never changes protocols until big NCI studies come out. Now from the literature it appears that weekly lower doses of taxol rather than biweekly dose dense chemo can help prevent neuropathy.

I'll need to try physical therapy for the balance problems if my insurance covers most of it.

But I 'm so damn mad that BC treatment caused me to lose sensations in my reconstructed breasts and my feet. I'm angry at what BC has taken from me!!!

Thanks for listening.

Hugs,

Pegg

angelfaith456

Hi All!

I haven't posted in a while. But I read this forum daily.

So sorry to hear peggysull about your continuing difficulties..I am two years out from my surgery and I am having the same symptoms. I thought it was just me. My oncologist doesn't know what to do. I've been through physical therapy twice, exercise twice a week(because of the pain, I can't do more than that right now. Plus I've developed lymphedema in my arm.) Cancer, the gift that keeps giving! LOL! I laugh to not cry. I sometimes think I'm losing my mind. And now I think my doctors are thinking I'm making this up.. I, too have tried supplements, etc. It does nothing but make the pain dull, it doesn't go away. All the doctors say is that it may take me longer for the pain to subside. It does take a toll on your mind..

All I can say is that I survived and I am grateful for that. But I want to be better. So, I get up each day trying again.

Thanks for letting me get this off my chest..

Angela

Teka

Cocker_Spaniel,

I hope your left leg has healed? *Hugs*

cc4npg,

I remember Gram and Mom talking about a little girl getting Cat Scratch Fever.

I chat with Stupidboob in private posts! ;o)

Fighter_34

Not very active, but I am checking in. Life is moving forward and everyday is a new challenge. I mostly deal with just being tired. Oh how it sucks to have so much you need and want to do, but exhaustion keeps you from doing it.

Hang in there everyone and thanks for letting an old timer that doesn't post frequently rant

jenjenl

Hey fighter! Love it when you pop on to check in. Hoping you get some energy, see what areas you can stop/change that are draining you. Saying no can be hard but rewarding!

Keep checking in. xo

Batesburg

Hello All,

Here I am scared......you know being TN pain seems so much bigger than pre BC. I have had a BMX- Feb. 2016, ALND- 21 lymph nodes, 30 rounds of radiation (ended in May) due to spread to two lymph nodes and I am experiencing pain in my ribs on same side as BC....I had similar pain (not exact location) during radiation but I guess I am more paranoid than usual about it this time.

Per usual, looking for anyone who has had rib cage pain and how they dealt with it!!

Thanks my dear TN friends!!!

Janet

LoveMyVizsla

Janet, are they ribs that got radiated? I know five of my ribs are in the field.

Batesburg

Some of them were in the field, I bet, and I believe it is also a bit further down along my side!

Cathytoo

LoveMyVizsla....I find it so interesting when you write about the radiation field. This was never discussed with me at all. What makes it even more unusual to me is that my RO is considered tops in the field

Seraphima

Funny, I was just trying to decide if I should ask about pain I am having (undergoing rads now). My RO seems to brush EVERYTHING off, seeming to think if he gives it no importance it won't be a problem?

But my ribs seem to hurt and sometimes something else inside. I hadn't heard of others reporting such pains, so I had no idea if it could be the rads. I want to ask for more info on the field and dose at my next appt with the RO. He said it was a defined rectangle in the front, but the machine goes behind me and turns on. I'm just curious what's going on with that. I had been keeping my eyes closed during treatment, but my side/back is starting to hurt, so I watched the machine the last two days and it is going around slightly to my back.

I don't have an answer though. I don't know what to do about any of this pain. I just wondered if it could even be the rads. I just hope it gets better when it's over.

I do hope you find reassuring answers for your questions.

simplelife4real

Hi All,

I haven't posted lately, but I pop in every few weeks to keep up on the posts.

Janet, if you are still on this thread, I wanted to let you know that I also did not have a pCR. I was stage 2b at original diagnosis. At surgery, there was no BC found in my breast, but there were two nodes that had small amounts of BC. I'm three years and two months out from diagnosis and still NED. Not getting a pCR is disappointing, but it is not a death sentence.

Wishing everyone a good day!

Meadow

hello Simple, myfriend!

LoveMyVizsla

Did anyone who had radiation NOT have boosts to the tumor bed? My RO is talking about cutting my treatment short, or cutting out the boosts. Makes me a little nervous.

Shopgal2

hey batesburg I am 6 mo post rads and am having a lot of pain on my radiated side. Never had that since tx ended but it kinda popped up this week. I was wondering what it was maybe even thinking it is nerve endings regenerating, thus the delayed pain? I go to my ro this tues for a checkup and will def be asking her. I did get pretty badly burned during the last 2 weeks of rads.

Luv I did have boosts and they were actually easier than the whole breast.

Batesburg

Thanks Shopgal,

I am wondering the same thing and had similar pain in the middle of radiation treatment in a different area of my rib cage that eventually went away. My skin took some major hits and ended up with some cellulitis from it all that required me to take antibiotics (oral).

The pain in my ribs is all along my side when I lean to my right side and a sore to touch rib at the bottom of my rib cage. I think most probably the major reason for it not going away is I keep aggravating it- poking, prodding, leaning to the right to see if it is getting better throughout the day!!

Let me know what you RO says. I am not due to see her but will see my MO if this continues into another week or two.

Janet

Batesburg

HI Simplelife...thanks so much for words of encouragement on pCR!!! The latest I have heard is Stage II statistically has a cure rate of 75-85%. Anyone else heard the stats...not that we are a statistic, but, sometimes helps to know the "averages".

Cathytoo

What does your MO discuss at follow up visits?...Just had my first 3 month visit with my MO. I had expected some guidelines regarding diet, exercise...just general info on how to proceed. Nothing! He asked how I was feeling, checked my breathing, felt for any sore spots...and that was that until next time in three months. I did have blood drawn and will know results tomorrow. Is this what happens at the follow up visits? I sort of feel that I'm on my own unless something happens.

Meadow

Cathy, Welcome to survivorship! My MO, who I adored, died recently, and I meet my new one next week. He would do the same as yours, feel around, look at blood work, ask "How are you doing?" If I had concerns, of course I would go from there. It feels a bit odd and scary at first to be out of active treatment and in the next phase, where we go several weeks without being monitored closely. Just know that this is the new normal, and watch for changes but also enjoy post treatment, post cancer.....enjoy life.

Cathytoo

Thanks, Meadow...you are always the voice of comfort and reason. I'm definitely living life (made dinner for 30 family members last night ). But, breast cancer is on my mind every minute. I feel like I'm waiting for the other shoe to drop

LoveMyVizsla

I just read two articles on the main site last night about survivorship. It said to ask your doctor for a plan, which doctor to see for what, and how often. Let me see if I can find one of them and link it here.

Had my boost CT this morning. RO thinks my seroma has shrunken, so we should be able to go ahead with the boosts. Will know for sure tomorrow or Wednesday.

LoveMyVizsla

New guidelines for survivors long term needs (2015)

Survivors Need Better Follow Up Care (2014)