It's hard to believe but here I am again blogging as I have had a return of Breast Cancer. Did not see that coming. Thought I had gotten rid of this gremlin but here it is again. Did everything asked of me only two years ago when first diagnosed by having lumpectomy, chemo and radiation and now only 18 months later from completing all of it do I find myself here again. I have asked myself many times over why me but I can't find the answer to that so I guess it is why not me. Just had the all clear in March that everything was good and here I am now in May undergoing chemotherapy again for a nastier form of Breast Cancer which is now in the skin tissue of the same breast the cancer first appeared in. More of an inflammatory breast cancer and is now a complete triple neg I am told. To now we still aren't sure what the outcome will be. Really scared right now. Completed one cycle of Gem/carbo however WBC has been to low to start second cycle which makes me feel rather vulnerable right now. Emotions are all over the place. Just want to get on with treatment so they can do the mastectomy and so I can have a real chance. Have been told with this treatment that hair will thin out however after only one cycle completed it seems like I'm losing so much hair daily that I can't see how it's going to stay at all. Don't know whether to cut it off or not. Uugghh. Some many questions but just don't have the answers yet. Would appreciate any information/advice I can get. Feeling very frustrated. Have to keep writing down questions I have going on in my head for the oncologist to hopefully answer. I intend to and will fight the good fight again as we all do when this gets us. Kimee

Kimee, as mighty sorry to hear of your recurrence , bastard BC , clear March and here you are back again in May , yeah you can't help but ask the ' why me ' question ....... Was your test in March a mammagram ?? I too am really scared just now , I have developed a pretty nasty rash on what is left of my left booby and all over my upper arm , can't help but think it's IBC , am hanging out to see my breast surgeon Monday afternoon. I can't really help with your questions but I know someone on here will be able to ..... Wishing you all the very best of luck with it tho and sending you warm hugs , I like your fighting spirit , and we all have your back hon. ((()))??

Kimee, I can't give you advice as my recurrence was after 7 years in the same breast with no cancer in lymph nodes. A mastectomy followed an d a change in hormone therapy . I am just writing to say I had exactly the same emotions. WTF was used a great deal. I did all the right things, hormone therapy ,regular mammograms. Unfortunately the dreaded bc can sometimes come back no matter what we do. you must have been devastated, but you are on to it and keep asking those questions and all on this site will be sending you positive vibes. I have found my biggest battle is to put the "what if" out of my head but it is so hard. The thing that sticks in my mind was when the recurrence occurred my surgeon just said " I didn't think that would happen? " good luck and hang in there, ask those question and remember all here Are supporting you.????????????

Not everyone gets to walk away and not have a recurrence. Thank your lucky stars they have found it and its still in the breast. Not fun though having to get on the treatment merry-go-round all over again. Hugz XX

Sorry to hear about your new diagnosis Kimee. It must feel that you had only just begun to put it all behind you and breathe easier, and now to have this new mountain to climb must feel overwhelming. Like you, I think many people must ask the "why me" question, but as you say "why not me?" Good on you for writing down all your questions, and trying to get as many answers and information as you can. I don't have any info for you, but just wanted to send you my best wishes for the fight ahead. Yes, keep fighting, and when there is no more fight, just keep on. You don't have to be a superhero or a saint, you just have to get through it, and you will. Good luck, I will be thinking of you. Jane

Hi Scanxious, Yes I did have a mammogram and an ultrasound but everything at that time appeared to be quite normal. Not too long after breast seemed to be going red like inflammation and really hard so thought should get it checked straight away. Worst fear became my new reality. When you see your breast surgeon on Monday do not let them dismiss the symptoms you are experiencing without a thorough check. What I have now could only be properly diagnosed with a biopsy so glad I have a very thorough surgeon. Many times this can be mistaken as a breast infection. Time is really important. Wishing you all the very best for Monday and hope everything goes really well for you. Just as much as you have my back, I've got yours and sending you wonderful thoughts. Please let us know how you go. ??????????

"Again Really. Why" | BCNA Online Network

26 Replies

Autore
Member
10 years ago
Stay strong lovely

i too was triple negative. My tumors were aggressive and growing fast. I felt very helpless and scared. It was a psychological rollercoaster.

i lost all my hair , eyebrows and eyelashes. It was traumatic at first to shave all my hair off, but eventually I got used to it and was really ok with it. Actually felt cooler to have no hair when I got hot flushes .

I had 7 months of chemo and have just had a bilateral mastectomy. The good news about triple negative, is that it's very responsive to chemo. And you're doing your best with surgery to get best results.

You've been through so much. I really feel for you right now and am sending positive energies. You will find the strength to get through this xox
mum2jj
Member
10 years ago
I am so very sorry you are back here again. I too had a second diagnosis so feel your pain. Mine was initially triple neg and had the same as you, lumpectomy/chemo/rads. My recurrence of same cancer was 18 mths after first diagnosia and 6 months after all clear so I know exactly what you are going through.

Second time around I had a mastectomy first and then the chemo. It seems the chemo first is your treatment. Be guided by your Drs as they have your best interest at heart, but don't be afraid to ask questions. I don't have much knowledge of inflammatory breast cancer but I think there is a group on here.

I am just 5 years in the clear from my second diagnosis so hopefully you will be me in 5 years.

sending you a big hug.

paula xxxx
San-Dee
Member
10 years ago
Hi Kimee,

Thanks for that. So sorry ... I was meant to be supporting you!

Anyway, you have prompted me to ask the question, again, of both med and rad oncologists and I'll also run it by my breast nurse. They have been an excellent team, but I am getting a little antsy about it.

Hope your treatment starts ASAP. I'll be thinking of you.

Hugs

San-Dee
Kimee
Member
10 years ago
Hi Christine

i have now joined his private group and look forward to gathering much more information. Since blogging again and getting myself onto this site I feel even more informed and that makes me feel a bit better already.

I will keep posting as treatment goes along and as I get nearer to surgery to undergo my mastectomy. Hoping they will just do both as I don't wish to continuously worry about the other one after all this. Hope I get that choice.

Thanks heaps for responding. xx
Kimee
Member
10 years ago
Dear San-Dee

I guess I would ask the oncologist why it can't be ibc and if your not satisfied with the answer and still feel anxious then you have every right to a second opinion. Remember you're the client. I to was taking antibiotics however we were doing other tests in the meantime and the results were only confirmed in a biopsy. I don't wish to alarm you as this is my experience only however if your are feeling anxious then that's not good for you either so best just be sure.

I will keep posting and let you all know how I'm going. Really hoping that I'll get to have treatment this week and blood counts are back up to a good level.

Lots of hugs coming your way.

Kimee
Kimee
Member
10 years ago
Dear Doll

Thanks for all the links I'll look into them. I need to get a couple of answers first from onc to know I'm looking up the right things for my situation.

I do have a wonderful breast care nurse and will ask a few things of her over the next few months to the remainder of the year I'm sure.

I keep singing the following song to myself over and over as it really helps. "I am woman" particularly where the lyrics go "if I have to I can do anything".

Going to make this my mantra.

Kimee
Kimee
Member
10 years ago
Hi ANDIJ,

I am planning to be positive all over again that we can get rid of this on this occasion. I do understand your worry but as someone once told me "it's not a worry until have to worry" so please don't be anxious just think positive.

My first diagnosis was always close to a triple neg but there were some traces of estrogen positive in the results so I was on Tamoxifen at the time. We are now dealing with a complete triple neg now so maybe that's what it was all along so hormone therapy is not really an option any longer.

One step at a time for now is all I want to think about. I have wonderful support with family, friends and work colleagues that I feel so loved and supported.

Good Luck for your scans tomorrow and I'll be sending positive thoughts your way. xx
San-Dee
Member
10 years ago
Oh Kimee!

What a bitch of a thing to happen. I totally understand how anxious you must be. I too have developed a rash, treated as an infection with heavy duty antibiotics, but nothing is getting rid of it. I'm scared out of my wits it might be IBC but my oncologist keeps saying no. I suppose all I can do for now is continue with treatment and hope for the best.

I'm so sorry you are having to go through this. Let us know how you are getting on.

Wishing you all the best.

Hugs

San-Dee
Doll
Member
10 years ago
Dear Kimee,

I'm so sorry you have to go through this again. The fear of recurrence and how I would cope is something that is on my mind as i get near to the end of my treatment. Draw on the coping skills you learnt first time around; we are often stronger than we give ourselves credit for. I have coped by searching for information, which helps me formulate the questions to ask.

Is there a McGrath Nurse where you are treated? Here is the link to find one in your area: http://www.mcgrathfoundation.com.au/OurNurses/MeetTheMcGrathBreastCareNurses.aspx

A breast care nurse you can contact? The good ones will chase up the oncologist and ask any questions that they can't give you answers for.

Remember that there are lots of resources on this site too. https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

Here are some links to information about carbo/gem chemotherapy and its possible side effects. The first is Australian, the other two UK sites:

https://www.eviq.org.au/Protocol/tabid/66/id/1324/view/Patient/Breast+Metastatic+cARBOplatin+and+Gemcitabine.aspx

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/gemcarbo

http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/gemcarbo.aspx

Take care
iserbrown
Member
10 years ago
Hi Kimee

Can't imagine your anguish particularly with there only being a couple of months from good to not so good. Thank goodness it has been found!

I note mention of a rash. I will post under the private group Breast Reconstruction a photo of my rash. It sent me into a tailspin but the outcome is good.

Wishing you an easier run with treatment. Take care from Christine xx

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