Just diagnosed

Hi Nicola You are so correct - cancer is a game changer. In three weeks time today I will have reached six years since my diagnosis. So much has happened, so many changes, friends lost along the way, new friends made. Makes me wonder what I might have missed if IBC had never knocked on my door. Not all is doom and gloom - in many ways cancer helped me make changes that I needed to make. Take care everyone. Reeniebabe Xox

Glad you are not having too many side effects Lorraine. I actually found the mastectomy the easiest part - would you believe mine was on my wedding anniversary which is also April fool's day!! Lol! I am also diabetic - make sure you speak to a doctor who knows about this (I saw an endocrinologist before the surgery to have a good management plan in place. Long anaesthetics (which often a mastectomy is) can play havoc with your blood sugars. High blood sugars create a lovely environment for nasty bugs. Better to make sure you and your doctors have a plan. I know it may be crazy but I did not even remember the drugs I was on at the time. Kept a list in my handbag. It becomes a little easier as time goes on. Do look after yourself. Reenie

Hello Ladies,

Well today I have chemo treatment 3 and no effects so far again, made myself a lovely dinner of salmon and vegetablesl  My 2 drugs seem to be different, I am having Doxorubicin and Cyclophosphamide every 3 weeks and am having my 4th and last 23/12. Then next year I go onto Paclitaxel once a week for 12 weeks and somewhere down the track I am having Herceptin added. I seem to be the only one at the cancer clinic I attend at Nepean Hospital that is having no side effects I guess I do need a litle luck after losing my partner so close to me being diagnosed. I am staying positive but admit the thought of mastectomy does frighten me mainly being diabetic and my age, but still I going to keep fighting. You must all stay positive and help each other as much as we can, but living in different states, the only way we can help each other is throught this wonderful website.

Love Lorraine S

Hi Nicola

So pleased that I can provide a positive story about IBC for you.  I know how hard it is to find those positive stories and my doctors were very quick to tell me that leave Dr Google and those terrible tales alone.

I feel your Dosetaxal pain.   I had a massive reaction to the first cycle of Dosetaxal and on review my doctors reduced the dose by 10% or 20ml, which seems such a small change, but it made a huge difference, although much of the damage was done.  My greatest fear throughout the treatment was that they would decide to complete further rounds of Dosetaxal and was so pleased to be told that very rarely happens.

You're absolutely right that cancer is a game changer.  Whilst a little bit older than you, we sound a little alike.  2013 was definitely supposed to be the year of Stephanie - I received a redundancy payment in January, ticked off some bucket list items on a trip to the US, sent my parents on a trip and started trying to break into a new type of role.  Then I started to notice a few strange things happening in my body and June brought the IBC diagnosis.

I agree with you approach to focus on the phase you're in and worry about the next one when it comes.  In fact my doctors didn't tell me much about the next phases.  Under great duress when I pressed, my surgeon confirmed at the first appointment that surgery meant mastectomy, but we didn't talk about actual surgery until my last cycle of chemo when the surgery was scheduled.

I'm a planner as well, so the lack of control I had over this time, particularly in the early days, was my greatest issue.  I worked through treatment and in fact found a new job and started during chemo.  I was extremely fortunate to find a supportive and understanding employer who to this day continues to accommodate my needs and allows me to split my days between working in the office and working from home.

I believe that cancer really shows you what and who is important.  I didn't end up working in the new role I hoped for, but I found a job that suited my skills, experience and knowledge and was exactly the right place for me. 

Take care and I hope everything goes well in your treatment.

Stephanie

Hi ladies,

Firstly congrats Stephanie on your prognosis. I can't tell you how good it is to hear about people who have come through the other side of treatment and are okay with IBC. Truly inspirational. 

I am on docetaxel too and I know what you mean, I have only had one treatment so far but it was wicked and I am only just coming through the other side 12 days later. 

Even though I am early on in the process I would reiterate to Lorraine and others that the trick I think is the one day at a time approach. I went from being a real planner career girl vibrant 41 year old to being completely stopped in my tracks. So that's meant that I now have to let that stress and worry about "what's next" go and manage what I can manage. Which means I let my partner and others help me with the household stuff or cooking. Which means I will plan for the next couple of days, or next week but I won't stress about the next phase of treatment as my phase of treatment I'm in now is chemo. So that's what I focus on: chemo. 

Cancer is definitely a game changer.

x Nicola

HI Lorraine

Thank you for saying I'm so young, post-cancer treatment I definitely don't feel young any more - with treatment causing early menopause and drugs causing a range of other hormonal changes.  Mine was the right breast  and (ultimately) one lymph node (although my surgeon did an auxillary clearance and removed 27 nodes).  

You've definitely had a tough few years.  My thoughts are with you as you progress through chemo.  You look to be on a slightly different drug regime to me.  I had 3 cycles of FEC and 3 cycles of Dosetaxol.  Dosetaxol was tougher than FEC but it did its job and therefore the raft of side effects I had to deal with then and the few that are still hanging about now were definitely the pain.

From my perspective, the mastectomy was the easiest part of the process.  I woke up from the surgery feeling like I could go for a 5km run.  Lots of people have told me it was just that I was on the good drugs, but I know that isn't the case and I'm convinced that it was my subconscious telling me that everything was OK.  Chemo was over and the breast was gone, therefore the cancer must be gone.  Fortunately that proved to be correct with the post-surgery pathology showing that chemo had dealt with 90+% of the tumour (my surgeon later admitted she would have been happy to see this result at 50-60%).  Radiotherapy was then used as an insurance policy to make sure the cancerous cells were gone.

I as/am HER2 negative so didn't need to have the Herceptin treatment, but have another 9 years of Tamoxifen medication.

Please stay hopeful and positive.  Despite how horrible chemo and the later surgery is, IBC is treatable and you're doing all the right things.

I'm based in Melbourne, but if you have any questions or concerns, please post them here and I'm sure I and many others can answer from our own experiences.

Stephanie

Hi Lorraine An awful way to meet us all I know, but one day sooner than you think, the shoe will be on the other foot & you'll be reassuring someone else who has been newly diagnosed that it will all be ok. I think Stephanie & Corrine say it all beautifully. It's a huge shock when you're first diagnosed but have faith in your medical team. Even in though it's just over 4yrs since I was diagnosed at 46yo, treatment has changed & is constantly evolving with new research. Next September is 5yrs for me & I will be having one huge celebration. Like most of us, I only heard the words aggressive, advanced & in your lymph nodes. Had chemo, double mastectomy with every single lymph node that could be reached removed, radiotherapy & now on Femara for 5yrs. Things change yes, but the horrible thoughts I had of not surviving have left my head. You will learn lots on here. Feel comfortable enough to ask anything as most likely one of us has had to find out the answer to the same question you have. Take care of yourself. Terri x

Hello Stephanie,

Gosh you are so young, I am 73, my cancer is in my left breast. My daughter who is a dermatologist discovered it in me, I saw the look on her face and I knew straight away she found something. She was able to get me to see a Professor at the cancer clinic, my husband attended. I lost him 21 months ago with eosophageal cancer when he was 72. I miss him terribly, but I also tell him I am not ready to go back to him yet.

I have 3 daughters living in sydney. I live in NSW at St Clair,near Penrith.

I also have a son living in Caboolture Q'ld.

I am so happy hearing all the ladies who have contacted me and how they are all going so well with their treatments. The thing I am most worried about is a Mastectomy, but I will do it if I have too. I have 8 wonderful grandchildren. I want to be here for a few more years yet.

I am being treated at Nepean Hospital, they are wonderful up there. I have no complaints whatsoever, and the cancer clinic nurses are the best. Of course the ones who treated Keith my husband were so shocked to see me back being treated for Breast cancer so close to losing him.

I have had 2 chemo treatments so far and 2 more of these before christmas and then I go on Paxlitaxel some name like that for 12 weeks 1 per week and I also will be having Herceptin as I am HER2 Positive.My daughter says this is a wonderful drug and will help me lots.

Thank you for contacting me, I am very positive though and hope to have at least 5 more years. I will do whatever is required to stay alive.

Love Lorraine S.

Hello Kathryn,

Thank you for contacting me, it is good to hear so many with this IBC are having success with the treatments, and giving me hope for the future. I am 73, but I will go through anything to stay alive.

I live alone after losing my husband to eosophageal cancer 21 months ago. I am attending the same cancer clinic and hospital as he did. They are all shocked I am back now with cancer so soon after losing the love of my life. I am coping OK though and am staying very positive as I want to be here in 5 years at least. I have lots of chemo ahead of me and a mastecomy which does frighten me lots.

The 2 chemo I have had have had no effect as far as nausea etc., but it is working on my breast. The Professor I am seeing is very pleased and has said to me "Lorraine, I think we are going to be having some success with this treatment for you".

This site is wonderful for support as we all do need to be in contact with fellow suffers. I know I am getting so positive reading all the comments and how the treatments are working for people.

Love Lorraine S

Hello Corinne,

Thank you for contacting me, you have given me some hope of being here for a while anyway, but I am 73. I am HER2 positive and will have the herceptin drug as well. My youngest daughter is a senior dermatologist at RPA a big Sydney hospital and she was able to get a Professor to see me.

I lost my husband 21 months ago with eosophageal cancer, and I am attending the same hospital and cancer clinic as he went to. I live on my own, but I am coping OK, have wonderful neighbours. I had a UTI and had 4 nights in hospital this week, my temp went up, so I had to get an ambulance, as it could have been the chemo upset my blood. luckily it wasn't,

I live in NSW at St Clair, very near Penrith. I have a son in Caboolture in q'ld.

I am so glad to read your message as it gives us all hope when we have just started our long journey. I guess the most frightening thing for me is the mastectomy. How did you cope with that?

Thank you once again for writing to me, you have given me lots of hope.

Love Lorraine S