Newly diagnosed
Wed, 11/03/2009 - 12:02
Hi everyone. This is all very new to me and feel like I have been caught up in a whirlwind. I am 34 years old and was diagnosed with breast cancer Oct 10 of this year. On the 22nd of Oct I had a bilateral mastectomy and sentinel node biopsy. I had a grade 3 cancer in the right breast and DCIS in my left. The enormity of it all is slowly sinking. I will be meeting with an oncologist this week to discuss my treatment program, which my surgeon tells me will include chemo, radiotherapy and hormone therapy. I have a positive outlook 98% of the time, the times that I do get very upset is when I feel my partner, family and friends don't understand what it's like to not be able to do the simplest task, to loose the independence that was second nature and when people assume I have now become a frail and delicate person. I am very nervous leading up to my treatment program. If anyone has any advice I would really appreciate it. Take careMissReena
Wed, 11/03/2009 - 12:05
#2
Newly diagnosed
Hi everyone,Firstly, it is perfectly normal for you to be angry and upset. Your livelihood has been affected. What seems to happen is the time between surgery and chemo, your friends and family look at you and think you look ok. So it doesn't sink in. You are the one absorbing the impact of how the treatment is going to change your life (whereas others do not understand - YET!). Its not until the chemo nurse tells you to cut your hair very short because you will lose it on day 12 of chemo that it really starts to sink in. The best advice I can offer is to make life as comfortable for yourself as possible. I'm 5 months out from treatment and I just now starting to feel a bit of a new normal with my hair coming back to a curly pixie style. Mine was grade 3 IDC - lumpectomy/chemo 6 cycles of FAC/ radiation (ER positive). On tamoxifen for 2-3 years. Was offered IVF treatment but declined in the hope to conceive naturally (chances are 80% positive). Stay strong
Wed, 11/03/2009 - 12:06
#3
Newly diagnosed
Hi all - I was diagnosed with invasive ductal carcinoma on October 22nd this year. I have had the lumpectomy and am now waiting to be told what sort of chemo and radiation therapy I am to undertake. I am 42 and have three teenage children and a wonderful husband. I would love to hear from others who have been through this.
Wed, 11/03/2009 - 12:07
#4
Newly diagnosed
Hello Cmarti15 I also am newly diagnosed Ive had lumpectomy and sentinal biopsy and a second op to clear the margins. still waiting for results. im have 3 daughters and am still getting used to the idea of having breast cancer (I may not have it anymore). I like you are now going through the process of what treatment to have. what grade etc was your cancer. hope you had a good xmas lyn
Tue, 17/03/2009 - 13:32
#5
Re: Newly diagnosed
Hi Lyn Sorry took so long to reply - I was starting to think that all conversations occurred on general discussion. I had a 2.3cm Grade 3 lump cut out. Only had 3 nodes removed and they were all clear - thank goodness. I have already had two rounds of chemo (AC) and am having 2 more of this type and then 4 lots of Taxotere with Herceptin thrown in for good measure and then Tamoxifen. So much to look forward to!! I am also in contact with another girl who had same grade and size cancer, who is one week behind me in chemo stuff. She only has to have 6 chemo sessions (which I think is unfair!!!) We have been swapping notes etc and it really helps. Some of the side effects I had, she also got - so comparing and talking about things really helped. Now I know there is someone interested in chatting I will check in more often. Let me know where you are up to with treatment etc. Regards Chris :-}
Mon, 23/03/2009 - 07:15
#6
Re: Newly diagnosed
Hi Girls, Miss Reena, Lyn, Lyndena1, Cmarti15, Misti, Ouartasc
I have read all your posts. I find it wonderful that you are all supporting one another through your treatment. It's not an easy road to travel. The big picture is, your all getting the best help and you will survive.
Merkel
Sun, 29/03/2009 - 13:18
#7
Re: Newly diagnosed
Hi Girls!
I found wonderful support at www.bcaus.org.au
You will get lots of replies from the very active members who promptly reply to your queries. They have all been through breast cancer or are going through treatment.
This site is great too...but very slow. I'm sure it will pick up as well if we all keep posting!
I agree cmarti...it does help if you can chat to someone who knows exactly how you feel.
Keep posting and check out the other forum.
AP
Tue, 31/03/2009 - 19:42
#8
Re: Newly diagnosed
Hi everyone,
First of all a BIG thanks to MissReena for staring this topic. You are most definitely experiencing what i think are very 'normal' thoughts. I hope this site allows you to see this and get some comfort and strength from the many others here who have had or are going through cancer. This site is only in its second week, and the Young Adults section will grow enormously over the next few months, helping you to connect with more people 
I can see that many of us posting our thoughts here are 'young' in terms of getting cancer and I think that this adds weight to the scariness of having cancer. Our younger age means we are a lot more isolated because there are less of us diagnosed compared to older adults. Add to this that there a few to no clinical trails for young adults and therefore the doctors don't really know how to treat and speak to us younger patients (well this is what i personally experienced both during and quite a few years after my treatment), life as a young person with cancer is hard, that's for sure!
I hope a website like this one will help bring us young people together so we can share and offload some of our worries and begin to smile again.
nikki
Wed, 01/04/2009 - 17:49
#9
Re: Newly diagnosed
Hi Everyone. Thanks for replying and your advice. Since writing the original POST last year I have turned 35 (Nikki, i too forget my age all the time), completed 5 weeks of radiation and today started my 4th chemo. 2 more to go, Woo! I'd lost my hair, funnily i found loosing the last eyelash to be distressing. I'm happy to say eyelashes, eyebrows and hair grew back when i was going through radiation. I may loose a little bit during the chemo I've got left but it doesn't bother me this time.
One bit of knowledege that I want to impart is to learn as much as you can about the cancer you have, plan and do whatever you kind yourself and lastly be kind to yourself.
For example, I was doing a jojoba oilation after my showers everyday before the surgery so that my wounds could heal better and continued afterwards. I booked in to cut my hair short and then 4 weeks later booked in for a super pixie cut and a few weeks later shaved it all off. Treat yourself to extravagant things and not feel guilty about it. It could be anything from persian ferry floss to a pair of dynamite books. ( i treated myself to both on saturday and I still have no regrets) I found this to be so empowering.
I define this journey, the cancer doesn't define my journey.
It is wonderful to have the opportunity to connect with young adults. Thank you for sharing your experience
Mon, 03/08/2009 - 21:01
#10
Re: Newly diagnosed
Hi! I hope everyone is well. I am pleased to say that I have finished chemo and radiation and am now onto hormone therapy. I'm getting closer to the end!
My hair has started to grow back and I'm hoping that I'll have a cute pixie do by the end of september when I will be a bridesmaid for a friend. I too find that friends and family see me and think I look "normal" because I wear makeup and go for a walk everyday or to the local shops. I've had a couple of people tell me that I'm being lazy because I've said that I felt tired. I got very angry the first time that I heard this and very quickly told the person that the tiredness I felt had nothing to do with going out till the wee hours of the morning, that it was because my body had been through hell.
I'm booked in for reconstructive surgery oct 23rd, which is 1 year and 1 day since I had a mastectomy. I feel like I've come full circle.
Has anyone else had reconstructive surgery? What was your experience?
Mon, 03/08/2009 - 23:04
#11
Re: Newly diagnosed
Reena,
How fantastic treatment is officially finished! I hate the expectation others put on us just because we smile and are brave doesn't mean we are not having a rough time not to mention what the chemo and radiation alone do to us.
I hope your hair does grow back in time for your friends wedding, i like th idea of a pixie do
Stay well
Tue, 04/08/2009 - 08:31
#12
Re: Newly diagnosed
Hi all
I feel like I am trespassing in the newly dx section ....lol as my dx and treatment were a long time ago.
I had a bilateral mast. with recon. (expanders replaced by saline implants) I love the result....perkier than the originals!
I'm sure it will go well. Its a huge step towards putting cancer behind you.
Thu, 20/08/2009 - 23:08
#13
Re: Newly diagnosed
Hi all, its interesting to find always find a thread call "newly diagnosed" on this site because its that very first moment when we find out what we have that all the questions suddenly arise and we embark on what is an incredible journey. Only us cancer people can know what that is like.
I write today after a very long absence and just back from seeing my doctor for the first year checkup after remission. The news is all good and I very much wanted to share it with you, because again, only you can truly appreciate what this is like.
For the record, i am a 47yo husband and father to two teens, diagnosed originally with NHL stage 4 and have undergone CHOP-R chemo.
A tough journey indeed, both physically and mentally, but life has fortunately kicked on and now I value each and every day.
My prayers, love and best wishes to all of you. You are a very special group.
Fri, 21/08/2009 - 16:59
#14
Re: Newly diagnosed
Hi,
I only found this post today - don't know why.
I remember the time of my diagnosis. I had undergone an emergency hemicolectomy after my bowel had completely shut down. Needless to say I was pretty ill. When I came to, I remember my surgeon and gastoenterologist sitting at the end of my bed looking very serious. However, next to me was the morphine pump which was having a significant effect on my reactions to things.
They talked to me about the size and extent of my tumour and what the possible repercussions were of it. I remember the conversation but no tears or fears at that stage. The morphine was doing its job.
4 weeks later I saw my oncologist and we decided to go forward with treatment. I began to be scared as I had already lost one good friend and had another who was going through chemo. Still, I hadn't realised the extent of what I was about to embark on.
A week later, all by myself I went to the hospital to have a picc line put in and then I started to think that this was ,maybe, really serious as I hadn't relased that the line would be so big. This was going to be attached to me for 6 months.
I then walked around to the oncology ward - all by myself- and as I saw the sign "oncology" and the Lazy Boy chairs, I realised that I was no longer someone who had had an operation and would recover in about 6 weeks, that I was now a cancer patient and that all the people I had known who had cancer at my age (50) had died or were dieing.Then I got really scared but have never told anybody how scared until now. I put on the brave face that we all do and just got on with beating this thing.
That was 2 years ago next week. I am still here and fighting fit, but I will never forget how my perspective changed from being someone who had a tumour removed to a cancer patient. That was when life changed I think.
I agree with Quijote that only us cancer people understand. My "chemo buddy" who was undergioing treatment at the same time as me used to say that as well. We lived very far apart but chatted often on the phone. He helped me so much when we'd talk and he said just that, "nobody can ever really understand unless you've been there". He didn't make it, though.
Let's keep up the good fight!!
Samex
Thu, 05/11/2009 - 23:15
#15
Re: Newly diagnosed
Hi Reena,
I was diagnosed in Nov 2006 at the age of 31yrs old. I had invasive DCIS, stage/1, grade/1, 0 node involvement, ER+ and PR+. I had a lumpectomy, 4 cycles of chemo, 6wks of radio, 2years of zoladex and still on tamoxifen for over 2 years now. Its been a hard and long journey but i still have hope, you will have good happy days and really sad miserable down days which is quite normal to feel. Its been 3 years for me since i was diagnosed and i still feel a sense of loss and grief in my life. I am blessed to have a daughter and a wonderful husband too in my life. At the time i was diagnosed we were trying for our second child which was very hard to accept that i might not be able to have kids when i wanted it and maybe in the near future. I feel at times this opportunity has been taken away from me and my daughter is missing out on growing up with siblings too. Don't get me wrong my health is important to me but its really hard watching everyone around you being pregnant, newborns and kids with siblings this is the hardest for me personally but everyone is different with what they want and feel in there lives. All my life i just wanted to get married and have kids - just the simple life nothing grand and spectacular...!
I found treatment chemo the hardest to deal with especially the hair loss, mouth ulcers, weight gain, joint pain and etc.... the first week is the hardest, than it gets better until you need to go for the next round, its always the way once you feel full of energy you need to got for the next round which really sucked!!!
Radiation was much better for me personally, the only thing i hated it was you had to go in 5 days a week for 6 weeks and that was painful in itself besides the extreme red sunburn on my poor left breast.
Tamoxifen is pretty much popping a tablet everyday for 5 years which isn't too bad compared to zoladex which i had to get injected each month for 2years so my ovaries are put to sleep so i don't get a menstruation which was awful because of my menopause symptoms which i still have hot flushes on and off today. i just finished my last injection last month - hooray!!!!!!
You will get through this, you just have to beleive it and trust in yourself. You will look back and say OMG how did i survive all of this but you do with the strength and support of family and friends and in God...
Good luck with everything you will be ok....don't give up!
Missy Moo
Mon, 09/11/2009 - 09:22
#16
Re: Newly diagnosed
Hi everyone. I hope you are all doing well. It recently dawned on me that I feel more comfortable on a hospital ward than anywhere else...what the?? It's unbelievable how the words " you have cancer" can change your life.
2.5 weeks ago I had breast reconstruction surgery where the surgeons cut my lats to create pockets for expanders to go in. I had the last drain removed on friday and the stitches are coming out this friday. I am very happy with the results, even with the swelling.
When i was in the hospital I was frustrated that some of the nursing staff didn't understand why I wanted to know how much fluid was in the drains, what my blood count was, etc etc. For me these were milestones, it meant I was recovering. I had a lot of anxiety and was very distressed when it came time for the drains to be removed as the memories of the drains from last year were fresh in my mind, the feel of it and the sound it made. 2 nurses said to me that they couldn't understand why i was so worked up about it. I couldn't believe it! I even made the sound effect of the drain being removed for them. There were other nurses who were an immense help and talked me through it, breathed with me and made me feel at ease. Interestingly when these nurses removed the drains it didn't hurt. When i was coaching I would say to sales consultants, the day you wake up and dread the thought of going in to work is the day you should think about a doing something different as the dread turns into hate and the hate comes out in the quality of work you do and will have an impact on your dealings with other people. Some people really shouldn't be in the jobs they have.
On a lighter note the best thing about everything thats happened in the last year is that I've spent most of it in my pyjamas. What a great feeling. A bit like hugh hefner without the playboy mansion, bunnies and smoking jacket.
Have a great day ( :
Mon, 09/11/2009 - 14:52
#17
Re: Newly diagnosed
Hey Miss Reena,
You must have a great collection of pj's!
Maybe when you're feeling up to it you can have a huge pyjama party!
Sun, 22/11/2009 - 18:05
#18
Re: Newly diagnosed
Hi Ms Reena
Your diagnosis is identical to mine (ICD right, DCIS left, grade 3 HER positive too) however I am 47 and I was diagnosed almost a year later and had my double masectomy on 15 October 2009 and have just started AC chemo last week with taxol and herception to follow. It's good to read that you have now come through the chemo and radiation treatment sections and are recovering from your reconstruction surgery.
I have to agree with the collection of PJ's, I didn't really have any so knowing hospital was coming up I went out and brought the nicest ones in the colours that suited me.
Take care DJ
Tue, 24/11/2009 - 17:26
#19
Re: Newly diagnosed
Yes I do have a lot of pyjamas! A year ago I would go to the shops looking for a pretty frock now I go looking for pj's, how things change ( :
I finished chemo in June and it seems like such a long time ago. Sometimes it is hard to see what the end will look like when all you want to do is hide under the doona but it does get better. I think cancer has made me a more better person as I think about what I'm being asked, told or instructed to do. I think about it's level of importance and impact to my life and decided if I want to play a part in whatever is going on. I don't let little things bother me. I don't think I'll ever complain about having a bad hair cut since having a bad hair year. I have newborn eyes and see things differently.
Sun, 14/02/2010 - 17:38
#20
Re: Newly diagnosed
Hi Miss Reena, cancer certainly does change one's perspective on things, one isn't as petty but also I get annoyed by others being petty too. Anyhow it's great that more time is marching on for you since your last chemo session and thus more time to be recovering and hopefully starting to feel healthy and energetic again.
I'm enjoying my newly acquired PJ's!!!
Take care Deejay
Sun, 14/03/2010 - 17:02
#21
Re: Newly diagnosed
hi there Im carolyn and Im 35 on jan 11 which is my birthday i was diagnosed with suspected breast cancer I am in the aus cap territory i have had the mammogrAm and the ultrasound and i am seeing a surgeon but my doc is quite biased and told me that there was nothing wrong with me
and yet my symtoms started because i was bleeding from both breasts
and swelling is there and the weight loss .i have written a diary called my journey and I am seeing a psychologist but
any way that is my story
i had the biopsy done too they couldnt find it
mean while im getting worse
but im coping with my psychologists help its hard because i have an intellectuall disability and i have a mum who is ill too
Thu, 22/04/2010 - 16:59
#22
Re: Newly diagnosed
Hi carolyn2,
just checking in to see how you are going. I am sorry to hear of your difficulties with your diagnosis and ill mum.
are things looking up for you now?
Nikki
Hi MissReena,I am 31 years old and I was diagnosed with invasive ductal carcinoma and DCIS on the 28th of October. I can certainly understand what you are feeling and especially about how fast things happen. I had a partial masectomy last wednesday and at the moment I am waiting on the pathology results to see the full picture and get a treatment plan. I feel anxious and at times very afraid. Most times I cope well but there are times I just cry. I hope your treatment goes well, I would love to keep in contact with you and share the events that happen in our lives. If I get to meet good people through this ordeal then it will be easier to accept. I hope you keep in touch.Cass