Thanks Jane. Our timings are very similar too. I'll let you know how I get on. Good to know I'm not the only one!
SooBee, please don't panic. I know that is easier said than done. I had an ultrasound on my breast.. maybe that's what your doctor meant. As i said earlier, my ultrasound found as seroma- pocket of fluid and due to an reaction to radiation my breast got infected and i ended up with mastitis. I'm 13 days from the onset of symptoms.. Red breast, burning hot and extremely high temps. My breast is still slightly pinker than usual and has a warmth to it. I was terrified it was cancer back. Trust me, we all have the same feelings with every lump and bump we feel. I'm only 5 months from diagnosis and 3 months from finishing radiation. We just need to breathe and take one day at a time. Please let us know how you go. Keep on at your doctor until you have the answers you need. xoxo
Cant help you on what the scan could be for if it is needed but I just wanted to acknowledge your post.
You could perhaps post on the ask our hurses section to see if they might be able to advise you.
Let us know how you get on and remember we are always here for you
I saw my oncologist today. WLA & SNB March. Nearly three months post radiotherapy. My breast has been red and hot for a few weeks now and I'm so sore to the touch. He thinks it might be cellulitis and has given me a week of antibiotics. What I'm concerned about is that he said that if the symptoms don't improve I'll need a scan. What else could it be? Could it be cancer again?
That's fantastic Jane! You must be feeling great! Onwards and upwards.....
Just need to sort out the hormone therapy now?
Thankyou all for caring. I saw my surgeon yesturday and he has gone thru all my tests.. blood, urine, ultrasound, biopsy everything that i've had done since i saw him back in april when i had surgery. He is very happy with everything. He's not worried about my liver etc.
I had Mastitis.... which i thought was a breast feeding thing - i was never able to feed my kids.had no milk.
He said i had a seroma where i had surgery. Beast and lymph area and i had a rare side effect from radiation which caused all this. The lump under my armpit is a simple cyst and had nothing to do with any of this - he will remove the cyst next week.
He doesn't need to see me again until April next year. Such a relief !
Well... went to my medical oncology appointment today andyou would not believe it.. he was away sick so he had a fill in. The fill in wouldn't discuss changing meds or anything quite frankly. Just made sure my breast was looking like it was healing from the infection and sent me on my way. I have an appointment in 3 weeks with my regular Onc.. Oh he did give me a scrpit for brufen oh but if i take the brufen then i also need a script to take nexium for the side effects of brufen.. really..
Bright note - Echo, my newly adopted Jack Russell is a gem. She has just slotted into our family beautifully with not problems. Max (our 6 1/2 yr old Jack Russell). Has accepted her into his yard, house bed and food bowl.
Sometimes different brands of tamoxifen can make a difference. I know this is the case for letrozole. Have a look on the threads in the hormone therapy and im sure there are posts on there. Or start a new thread asking about brands.
Did the oncologist discuss trying anything else? You shouldn't have to put up with all this.
I hope your appointment on Wednesday goes OK. Let me know how that goes.
How did it go with the new dog?
Hi Anniej, i am actually in australia. Still just figuring out what to do. Had medical oncologist appoint today but he was away sick.. I have my surgeon appoint in 2 days so just have to sit tight.. Thankyou for caring
I saw a fill in oncologist today and basically he told me i have to go back on the tamoxifen - i explained all the joint pain, bone bain, anxiety - i can't make a decision between ham and cheese without a panic attack.. mental confusion 17 day headaches and the list goes on. He told me i could have a 2 week break and then He wrote me a script for ibuprofen for the pain but i also need a script for Nexium for the side effects of ibuprofen..... i left.. and have an appointment with my oncologist in 3 weeks. So i have to start tamoxifen again in 5 days.
I fall asleep in the chair in the loungroom and i wake up crying hysterically because of the pain.. My 11 yr old daughter is deeply hurt by this. i don't want to sleep because i dont want her to be scared. I am just so flat. I have nothing left, no anger nothing...
Hi Jane, how awful for you. Such a traumatic experience with so many different professionals involved. Can I just check that you are talking about NHS and not another country? There are complaints procedures if you or hubby can't get anywhere. Let's hope it doesn't get to that. X
Don't feel guilty...... what you're going through is just as hard as anyone else's. You're entitled to rant and get upset.....that's what this forum is for!!
The joint pain and stiffness is certainly challenging. One of the worse things is getting my fingers working in the morning, trying to make a fist.
And a new one for me is my hair is starting to fall out. Nothing major, just notice it on my pillow on the morning and in the bath after I've washed my hair. Takes me back to this time last year when I was having chemo. Not happy😣
The stabbing pains in your breast are from radiotherapy. All perfectly normal. Just mention it when you see your oncologist.
Hope you enjoy the pup xx
hi Sue, The joint pain is truelly awful. It takes me anywhere from 20 minutes to 3/4 of a hour just to get out of bed. I have to start getting my joints moving and its the game pick up sticks where you need to remove 1 stick at a time or else they aii tumble down. I have to move one joint at a time. millimeter by millimeter or the pain is so bad i scream. Once i am up and moving it is manageable but if i sit or stand or stay in the say possition for move than about 20-30 mins, i start all over. I have alful stabbing pain in my breast and i don't know if it's from the first surgery, the rads or maybe he infection or the tablets..It's not fair we have to go thru this. I know i am fortunate that i have only been brushed by cancer but it's not fair..i know most of you ladies have been thru far worse than but and i feel guilty complaining
That's good to hear that you have appointments lined up.
I can't comment on tamoxifen as I'm on letrozole. I get stiff and achy joints with that, plus a few other irritating side effects, but I can cope.
My daughter would be so jealous of the pup! Hope that goes well and at least you can think about something else.
Let me know how you get on.
Hi Sue, I know i am thinking the worst and i hope i am over reacting but mentally this is how i have to cope.. Prepare for the worste and hope for the best. I have left messages for both my breast care nurses and my survivorship nurse. I have an oncologist appointment monday morning and a surgeon appointment on wednesday. My breast is still red and swollen from the infection so i really don't want another biopsy just now. It's barely a week since i had the last. I need to speek to my surgeon as i still have another pocket of "volume" where my nodes were removed. I've stopped the tamoxifen because i was having extreme joint pain, i am anxious all the time, i have alot of confusion, headaches that go on for weeks, dizziness and the list goes on. I just looked up the side effect for another drug i've been taking call Lyrica for nerve pain and the side effects are very similar so i am wondering now if it's the lyrica or a combination of both.... I have calmed down a little over the past 24 hours and i have something good to focus on. We are trialling the adoption of a recue dog. She is an 18 month old jack russell called echo and i am really excited. We had a jack and he's 6 yrs old but think he is a pup and i am really hoping that they get along.She comes to visit in the morning to feel the waters so wish us luck
Oh Jane, this is just awful.....I really don't know what to say. I feel really upset just reading this.
OK, so Monday morning, you need to speak to your bcn. Or maybe your husband should. He needs to start banging some tables and not be fobbed off! What other tests can they do? A biopsy? Or an MRI?
You know, you are assuming the worse, but after your treatment, it is unlikely.
And even IF they find something, it can be treated.
Sending you a massive hug from the other side of the world
Thankyou for your kind words.
I am broken and i don't know how to fix myself - have have no diagnosis, i have no answers
I went in to this other doctor and he went thru urine and bloods. i said that i wanted the biopsy results. He told me they were not there and i would have to call on friday. He told me from what i had told him, he thought i have mastitis and it was ok.. really.. he didn't look at my breast, i don't even think he knew i had cancer.. mastitis??hmm, he told me to ring friday and see if the results were in.. another 2 days of waiting.
Anyway, called the clinic on friday and yes the results had come back from the biopsy and i could see my doctor in 20 minutes. Great. Good /Bad whatever, i just need to know. Went in, waited almost an hour. Sat in her office and explained what had happened with being in hospital ect because she had not been notified either. She went thru the results and said "hmm", i held my breath and said ok, tell me. She said some of the results were there but the ones were needed had not come in. She called the lab and told, they told her they would call back. She told me that she would call me as soon as she knew anything and i left. Gutted, more waiting. I went to my car and cried, then called my hubby. When i got off the phone, i had a missed call and a message. It was my doctor asking me to call her. I went back in the clinic and sat in the waiting room for another 45 minutes. She called me in, i barely closed the door, she put her hand on my shoulder and of course the tears started and i thought the worst. She said " It's ok, the tests that we wanted, the ones that should if there were cancer cells present... that test wasn't performed so it's ok... "swear word" are you serious?? I had a collection of "volume" in my tumor site.. and after me asking 5 times whilst having a needle sticking out of my breast if they were checking for cancer cells and was told yes repeatedly.. you're telling me that 1 test..was not performed. Doctor said yes, thats right so you can calm down now, i'm not telling you you have cancer back. I asked her if she really was serious.. and she was telling me nothing. I grabbed the door handle and she grabbed my shoulder to stop me, i pulled away and told her i needed to leave now before i said or did something not very nice...
I cannot believe that the one test they needed to do, they didn't. The pathology company called Dorevich has been striking and doing limited services because they want a pay increase. Is this the reason my tests were not performed properly? So, i cried all afternoon. I called my breast care nurse and they both were away. I called my survivorship nurse she was away and i felt like i was in the middle of the ocean, no life jacket, no life line. Just there waiting to drown. I have no idea what to do now, i have no anger left i am just numb. I have nothing more to give and i just want to curl into a ball and be left alone. I am profoundly sad and i never knew what that meant until now. I am so alone and so broken., This is truelly the worse day i have had. Worse than finding the lump, all the tests and waiting and even worse than being told i had cancer in the first place. At least during those times i had something to grasp onto, now i have nothing and i am broken..
Hi, what an awlful time for you.
I had cellulitus infection after surgery, and loads of fluid which was removed, finsihed radiotherapy end of June and now developed large lump under surgery scar and my breast is getting harder and harder.
I see my onco in couple weeks.
Waiting for results is the worst time ever, and having to keep on at doctors and nurses so frustrating.
You will get the results and infection will go, mine took over a month to clear and I am still suspicious that its inside breast.
Can you get to a support group? I find it helps so much.
Like here other peoples experiences do help us.
hoping results come through soon for you, you have got this far, and whilst we think its the worst it oftens is not.
It's perfectly normal that you are worried. After a BC diagnosis, we all assume the worse. Don't read too much into the fact that the results are already in. I had an MRI scan that came back in a few days and was absolutely fine. It really just depends on staff.
Have you tried asking your bcn? Often they have access to the results.
I called my surgeon and he was un aware of me being in hospital... bloody annoying because i asked them to notify him.. I had an appointment with him scheduled in 4 weeks, i now have it rescheduled for next wednesday. I called the imaging place and requested all results be sent to him as well as medical oncologist. During the call, the lady told me the results are back..... am paralised, are they back because it's good news or bad news.. normally takes 3-5 days.. I rang GP to see if i can go see her and get results and of course she does not owrk today.. asked to see another GP and got appoint for late today BUT the nurse checked and they have no results...Nurse is going to try and follow it thru and get results to GP and call me back. It's the waiting and the not knowing. Everyone is tellin me to stay calm, don't worry. Telling me i am looking too much into it. Far out, i was diagnosed with breast cancer not 6 months ago. Of course my mind is going to assume the worst.. i am human.. and i am scared. Even if these results are ok, i have another issue where my nodes where taken from that needs addressing. Waiting is the killer.. i have no strength left, i just want to wake up from this bad dream and move on.
So sorry to read of your problems. Unfortunately I have no knowledge of what you've experienced, but I didn't want to scoot pass your post without sending you a huge hug. It's a the worse time waiting for results😢 Let us know how you get on.
So, What a few weeks i've had. So very scared- i had 2 pockets of ?? form, one where the tumor was in my breast and the other deep down where i had the SNB.. Really scared that thay are going to find cancer cells in the FNA's they did..4 days in hospital and diagnosis is cellulitis caused from Radiation in the tumor site, that i finished 3 months ago..
Found a lump 2 inches away from Lymph node scar. Freaked out thinking it was another tumor. Rads onc assured me it was under the skin but external and nothing to worry about - that was mid june. 2 weeks ago i went to my GP as lump was bigger and sore, she assured me it was a hair folical that was infected and put me on 1 weeks antibiotics. That didn't help and went back to GP last Thursday as an open sore had appeared and it was swollen. Again i was assured it was ok but if it got worse i needed to present to the ER and have the hair removed. Saturday i felt under the weather.Didn't eat, drank very little. Have been getting awful joint pain from Tamoxifen and put it down to that. 1.30 am Sunday morning i woke, i was so cold i was violently cramping, this went on for a few hours. By 5am i was in agony. It felt like my arms and legs were tired up and i had to carefully untangle them but every movement felt like pain i have b=never felt before. I couldn't move enough to wake my husband and i couldn't utter a sound.It took me 1 1/2 hours to get out of bed. My temp was39.9c ( 104f) and i thought i was dying. My breast was so sore i was to scared to take my bra off. I ran the shower to cool myself down and when i looked at my breast it was fire engine red with red lines running everywhere..i touch my nipple and i screamed. I took myself to the ED and was admitted within 20 mins - normally you sit in the waiting room for 2 hours before seeing a doctor. I was started on IV antibiotics. Sent 2 nights in the hospital with IV antibiotics every 4 hours. I had an ultra sound done today to see what was happening and the second i layed down and the started looking i just cried. It bought back all those feelings back when i was getting diagnosed, i had a nurse and the lady doing the ultrasound. When they said they found a pocket at 3 o'clock i said that that was my tumor site and there was another pocket where my nodes where removed. They gave me a local and drained the one where the tumor was. I asked if it was clear fluid and she just told me that theu had removed "volume" and it need to be sent for testing. The other pocket was really deep so she said she would let my surgon decide what he wants to do. I am really really scared that the "volume" they removed is going to have cancer cells in it. I spoke to breat care burse and she said that she has seen this reaction from radiation before.. it's rare, but can happen.. So now i play the waiting game again....i am so scared i just cry all the time..