Waiting for chemo!!

dougal

Hi Everyone, I am new to this network. My name is Debbie and I was diagnosed with Invasive ductal carcinoma, grade 2, HER positive amplified, oestrogen and progesterone receptor positive, tumour 23mm, on 5th July, so after a life changing shock, out of the blue as no symptoms, at 51 went for my first ever mammogram. Thank god I did as I'm one of those people that thinks nothing will ever happen to! as I live a healthy life, breast fed both my children, never smoked etc. Anyway,how wrong I was, thinking I was so healthy. 

I have since had a right side masectomy on 13th July, but now feeling very stressed, as am still waiting for an appointment with the oncologist. There seems to be an issue after having surgery at Royal Perth hospital I am now being told I'm suddenly out of catchment area for treatment, although not told this when I saw surgeon. I cant believe how stressful this has become waiting for chemo to start and not knowing when. I would just like to ask everyone out there who has had chemo, how long after surgery they commenced it as I'm worried the longer I wait the less effective treatment will be. Any other advise also would be greatly appreciated. Love to hear from anyone out there.

kezmusc

Hi @dougal,

Welcome to the forum.  You are about to meet some amazing people here. Loads of warmth and wisdom.  The rollercoaster that is breast cancer.  The shock is just indescribable isn't it? An there is nothing worse than last minute changes of plan.

I was 45 at diagnosis feeling great just getting on with life then I found a weird kind of lump under my arm and the rest is history so to speak. Blows you out of the water to say the least.

  One month to surgery from Dday chasing around the elusive breast tumour that was playing hard to find.  Then about 6 weeks to chemo starting.  They like you to be a bit recovered before you get going. 

Keep asking questions lovely.  We are all here for you.

xoxoxox

dougal

It really is an emotional rollercoaster, I am still trying to process it all. I thought 6 weeks seemed about right to start chemo, but as I'm nearly into 4th week post surgery and still not got an appointment for a oncologist its stressing me out I will be waiting forever. Just want to get on with it and get it over with. Will also need a year of Herceptin injections then anti hormone tablets for 5 years.

Sister

I had my second surgery on 8 January and was scheduled for chemo on 5 February after follow up appointment with the surgeon to check healing.  But my cancer did have node involvement.  Have you been back to see your surgeon?  Do you have a breast care nurse?  One of the things that many here have found is that sometimes you need to make a noise.  If the surgeon won't help and you don't have access to a nurse, maybe admin can help with a suggestion ( @Giovanna_BCNA ?). Take care.

Giovanna_BCNA

Hello @dougal sorry to hear of your  recent diagnosis.  It certainly is a roller coaster of ups and downs and understandably you are feeling worried about your follow up treatment.  Dont hesitate to call our helpline on 1800 500 258 to speak with one of the cancer nurses as we can link you in with some local services including breast care nurses.  You may also like to contact your local Cancer Council helpline on 13 11 20 as they can provide information and referral to local services.  There is also Breast Cancer Care WA https://www.breastcancer.org.au  All the best with your treatment, kind regards

dougal

Yay, never thought I would be happy to see an Oncologist!!! After 3 days of many phone calls to hospital, breast nurses at clinic, doctors and even the central referral centre!! so stressful and not bloody fair I'm having to deal with trying to get an appointment sorted out so I can start chemo and get on with my life! Anyway eventually got a phone call to go in on Monday 6 August to see Oncologist. I must have sounded like I'd won lotto! so happy to just know when the next step is happening. I f anyone can give me any tips what to ask the oncologist that would be awesome. I've read some articles on chemo and it's freaking me out, the unknown. Also, has anyone experienced any side effects from the Herceptin injections that I will also need. Another thing, I'm finding pretty annoying is along with all the support out there from friends why do some people try and tell you to drink some special herbal tea or try all these alternative natural so called cures. I don't want chemo, anymore than anyone else out there but surely you have to trust the conventional medicine over alternative that, frankly, have never been proven to work. I'm feeling like I caused this cancer with comments also on how my toothpaste, chemicals in the home etc caused this to happen to me. Honestly, Arn't we all exposed to chemicals, car fumes etc etc etc even these wonderful people that think they are so good using all these expensive natural remedies for everything, that it would never happen to them!! Sorry, on a bit of a rant, great to talk to all you guys out there.

Emim

I'm having my first appointment with my oncologist on Tuesday 7 August. I guess I will find out more at that appointment, but my surgeon tells me I will need about six months of chemo based on type of cancer and because I am premenopausal.

 I have avoided talking to people about wellness and natural remedies- as you say, why did we get cancer when we are in the same environment as everyone else. I don't think it is helpful for people to suggest that what toothpaste you use or what vegetables you eat (or didn't eat)caused it. It happened and I think it is best to focus on getting better, not finding blame for why it happened. In my case, I am childless in my early 40's and my aunt was the same, and it is probably genetic (I am getting that tested). In any event, regardless of whether it is genetic or not, my aunt is still here today after conventional treatment and so is a good role model for me. The treatment I am getting is a lot more advanced than what she had 25 years ago - the medical profession is constantly searching for improvements.

I know someone who is not here today due to spending time on natural remedies before finally trying mainstream medical treatment - by which time it was too late. 

dougal

Thanks Emim, that's made me feel better already, especially hearing your aunt is still here 25 years later, that's great news, yes you are so right we all live in the same environment and breathe the same air. I just think some of us are lucky and some not so lucky, that's life! Good luck with your oncologist appointment, think I'm having 6 months of chemo to. A long roller coaster ride, but sure we will both come out the other side ok and appreciate life so much more. For a pessimist, think I am being really optimistic, for me, to the challenge ahead. It really does help knowing you are not alone going through this as well.

kmakm

Hoo-bloody-ray Dougal! About time. Excellent news. 

I was warned early on about this problem. So the first person who tried it on me - "I have a friend of a friend who was given six months to live who went vegan and is still alive three years later" - I literally walked away from, saying my doctors have told me not to listen to stories like that.

I've had a few others try but this gentle 'stop please, I can't hear stories like that' has done the trick. You are the most important person at this time, and if you don't find this kind of info helpful, no matter how kindly meant, you have to say so and your friends and family have to respect it.

The fact is apart from a few genes that affect a tiny proportion of the population, we don't know why most cancers happen. We know risk factors that can increase your chances of developing cancer, but why some people with the same risk factors don't get it when others do, is as yet unknown. It's a waste of time worrying about why. If you can stop smoking, drink less alcohol and lose weight if you need to, then by all means do so, but your main job at this time is to get through treatment as best you can. So that is exercise through chemo (shown to reduce severity of side effects), stay very well hydrated, keep your bowels steady, rest when you need to, neither gain or lose too much weight, eat healthily to keep your nutrition going and tell nosey parkers to eff right off with their 'opinions'! If they're not helping they get the boot!

I find it hard to know what to advise you to ask your oncologist. We all react differently, and there are several different types of chemo regimes prescribed to people with BC. Ask what yours is known as and you'll be able to search the threads on it here. You could ask for the EVIQ sheet on your chemo. That's an info sheet. My onc gave it to me and I found it helpful. Always remember though that no one gets all the side effects!

Do you want to have a go at keeping your hair? If so, ask your oncologist if the cold cap is available.

The fear of the unknown sucks, and you just have to slog through. Soon enough chemo will be routine. It's bizarre, but you'll know how you react and how to handle it (never be afraid to ask for more drugs, don't suffer in silence). Try not to Dr Google, and if you do, stay away from the US forums. Stick to the BCNA and Macmillan (UK). Take it one day at a time and know that you can do it. Breathe, and hang in there. K xox

Giovanna_BCNA

Hello @dougal and @Emim
Great to hear that you both have appointments to see a medical oncologist.  Good idea to write down questions and to take someone with you to the appointment.  The discussion should include information regarding your specific treatment plan which will be explained to you.  It will be a huge relief to start your follow up treatment @dougal

Annie C

@dougal
Hop onto the thread and read the comments on "Is That Right, Did You Really Say That" in Day to Day . You will find that you are not an orphan in the advice department.

I always say -"I will stick to the medically proven and when you join the BC club you can follow your own advice"

So pleased to hear that appointments are progressing.
Warmest thoughts
Annie

Afraser

Good advice from @Giovanna_BCNA about taking someone with you to take notes. There can be a lot of information and it’s often hard to take it all in. My oncologist gave me information on my chemo in writing. I had a year of herceptin infusions (pre the injection option) with no side effects. Remember that, regarding side effects, people react differently to the same substance and that a list of side effects may mean you will get some of them, but not all! Best wishes.

Fletch

Hi dougal and emim, so I have my first oncologist appt August 8th ! 
By Thursday all 3 of us will finally have our regime. I too have found it soooo hard waiting! My surgery was July 3rd. I went back to work 2 weeks later and am now feeling very "over" this waiting game.
Best wishes to you both.xx

Fletch

Hi again, I am soooo over this waiting!  Just needed to get that out!

Have a great day everyone.

Let me know how you go @dougal and @Emim .

kmakm

As my husband's grandmother used to say, better out than your elbow! K xox

dougal

Hi everyone. I saw a lovely lady oncologist at Royal Perth yesterday who made everything a lot easier to understand than talking with the surgeons. So. I am starting TCH (Docetaxel, Carboplatin, Trastuzumab) Treatment cycle is repeated every 21 days. I will have 6 cycles. After 6 cycles, will just receive trastuzumab every 21 days for a further 11 cycles. Chemo starting on 23 August. I did ask if I could start next week, but they want to wait for surgery to heal a bit more as I still have some swelling around where lymph nodes were taken out.

I had to have two injections into arm for them to look how well heart is pumping, as a side effect of trastuzumab means the heart could be affected! great! so much to look forward to!!!. There are pages and pages of side effects for this chemo. If anyone out there has any good news, as in its not that bad! would love to hear some good positive stories from anyone on this same treatment plan. I am scared about some of the side effects, mainly the nerve damage one. 

Good luck to Fletch with your oncologist appointment tomorrow, let me know how you get on. Hope your appointment Emim, went well today. Will you be on same treatment plan as me?