Waiting for oncologist ??

Jazz26

Hi there,

I was diagnosed with breast cancer 5 weeks ago. I am now 4 weeks post surgery after a lumpectomy. I had a grade 2 invasive ductal carcinoma. 
My specialist informed me last Thursday that I will definitely require radiation and hormone therapy, however chemo is still undecided as I am borderline but it is likely to happen. He said he was going to do a referral straight away for the Oncologist, I have heard nothing yet. Is it normally to take a while ? I have a lot of questions about the chemo and I am frustrated with not being able to get some answers. 
I do not normally go out much but I have quite a few events booked for Jan to March 2018 and am wondering how chemo may affect these events. Am I going to be able to attend ? Will I be too sick ? How bad are the side effects ? And so on. Not to mention being able to get back to work, how long ? I am a FIFO worker which makes the work situation even harder.
Any help with answers or advice would be greatly appreciated as I know very little about breast cancer thank you.

Kind Regards
Jazz
 

primek

I'd be on the phone Monday and ask the specialist who he referred you to and a contact number and get on to them...pointing out it's 5 weeks since surgery. 

As to how you will be...well it's not something you can know in advance. It depends on what chemo they offer and how you are affected. I was really unwell and unable to work. I had good weeks though snd hood days.  Many women though are able to continue to work throughout and continue most activities.

I was able to travel away for short trips when timing right and drugs sorted. I went out for meals for many family events. I just got tired easily and ready to be home by 9. 

I hope this helps. Does your hospital have a Cancer Care Coordinator or do you have a breast care nurse. Either can also assist in hurrying along your oncology appointment. Kath x

Molly001

Hi Jazz, all the waiting and all the unknowns do your head in, that's for sure. It will get easier once you have some idea of what you're dealing with. As Kath said, get onto your breast specialist and see what's going on with your referral. Having no plan in place 5 weeks post surgery must be frustrating. When it comes to chemo, we're all extremely different. Some work comfortably all the way through with minimal side effects and others are literally bed-ridden for weeks at a time. I think we all have good and bad weeks too. It's impossible to speculate. It's a bit of a case of try it and see. Wouldn't it be nice if the oncologist tells you don't need chemo?!! Here's hoping xxxooo

Rachwllms

Hi Jazz, I have just been through what you are. The timeline is very similar to mine, i had to wait 5 weeks post lumpectomy and a week for the oncologist appointment. I have to have 4 rounds of chemo, herceptin and hormone treatment, although my margins and lymph nodes were clear i had micro calcification's around the initial tumor. I had my first round of chemo on the 3rd of November and i was pretty crook from it. The day after treatment i slept all day, i can only describe it as the worse hangover you have ever had and it lasts a week.I only had two days off work but i think i could have done it if i had of pushed myself. Day six was yesterday and i felt fantastic and i have felt the same today. My head is getting really itchy and has developed little sores all over my scalp so i'm guessing i will lose my hair pretty soon. Next dose of chemo is on the 24th of November so fingers crossed it's not too bad. Good luck with your journey, Rach xx

melclarity

@Jazz26 I agree, I'd get on the phone and find out what's happening, it shouldnt have taken that long for your Oncologist appointment especially as you already have your results/pathology. It is hard trying to get ahead of everything especially if you have alot coming up. I had 4.5 months of chemo 4 FEC every 4 weeks and 8 weekly Taxol. There are alot of women who work through no problems, I managed for about a month and was forced to stop completely due to being too ill and was off work about 3 months in the end. Ummm no I couldnt afford to not work as was a single parent, luckily I had income protection that helped a little. I made heaps of plans to manage it and how I was going to work but unfortunately I was drug sensitive and my body just didnt cope. So just remember you may not need it, and if you do, everyone is different and you can't possibly gauge how you will be, its more a wait and see in terms of your plans. My diagnosis was Grade 2 Stage 3 IDC ER+, so lots of factors in determining chemo or not. Hang tight. Hugs Melinda xo

Jazz26

Thank you ladies for your comments it is greatly appreciated. The more posts I read the more I realise I may just have to try it and see how I go, hopefully I won't be too sensitive to it. I do have a breast care nurse whom I emailed last week with my concerns but I have not heard back from her as yet. I will get onto my specialist on Monday and find out what is going on as waiting is no good when I want to get back to work ! It doesn't help that it is almost Christmas too which I'm gathering will delay my treatment too ?
 Rach I would be very interested to see how your journey goes as it is very similar to mine and at a similar stage also. I'm still trying to understand the lingo everyone is using and figure out how to read the pathology report properly to understand more details of the findings. This is the first time I have even talked about my diagnose in detail as I guess I just didn't think it was real. I just though the lump is gone now I'm all good lets move on. It was the discussion of my treatment that made reality hit me like a freight train. :-(   Anyway talking to those that have experienced the same makes me feel a lot better so thank you all. :-)

Unicornkisses

Hi @Jazz26, there is an excellent booklet you can read and download called Your Guide to the Breast Cancer Pathology Report on www.breastcancer.org the main breast cancer website in US. It has places you can fill in your own details and refer to the description. This will help a lot with understanding the pathology.
There is also a fact sheet on pathology that is helpful on the main BCNA website here under resources.

One thing I have realised through all this is that you have to take control of the process if you want peace of mind. 
You will learn what questions to ask such as - when should I hear back from the ....... Insert specialist here ...... With my appointment?
That way if the call doesn't come when you expect it, you can ring straight away.
I would want to know who the referral was to and their contact number before leaving the specialists rooms. You will find the receptionists are usually very helpful with that information.

Jazz26

Hi @Unicornkisses thank you for your comments. I will certainly will chase up that information cheers :-) 
Unfortunately I did not see my specialist in person about the oncologist, he rang me after they had their meeting about me hence the lack of information I was given in this instant. I will certainly be looking for answers Monday morning though.

Rachwllms

Jazz i would really like to keep in touch too. I can give you me email address if you like or we can communicate via this post ?

Jazz26

Hi Rachwllms that would be great smile: 
I sent you a message did you get it ? Just message me back with your details and I will give you mine too cheers.

Jazz26

Hi everyone,

I have an update, I got onto my specialist yesterday and told the receptionist I was still waiting to hear about the referrals after just over a week. I was told leave it with me and I will get back to you by the end of the day... just when I was thinking here's another day with nothing ! 4.30pm the phone rings and it's the receptionist for the chemo specialist.. yay an appointment now ! Then this morning I got a call for the radiation specialist yay another appointment ! Hopefully this means I will finally get answers to my questions and a date for the start of treatment. Nerves are starting again now, guess it's the fear of the unknown...

primek

Great news. So when are your appointments? 

Jazz26

Hi primek

I have the chemo appointment on Friday and the radiation appointment next Tuesday. Can't believe how full my diary is this week ! I guess it will only fill up more in the oncoming months now.

primek

Yes it will. Now don't feel silly if after the appointment you start with the tears. Even though from the very begininng I knew I was having chemo
 I was still in tears after the appointment  (waiting for a special heart scan pre chemo).  It was the realisation it was real. Yes I'd had surgery and breasts removed. But the chemo really is the bit that makes you really think "I have cancer". Bloody scary.  But I now think of it as a bit of damp dusting after a thorough clean.  Just making sure all removed. X

Jazz26

Yes I can understand the tears, I walked out from the biopsy and started crying because it suddenly hit me that it was real. I had nobody with me that day too which made it even harder, I felt like a sook and that I should be stronger. Luckily my partner has been able to come to all appointments since, so far anyway. It makes a huge difference especially when most of it doesn't sink in for me, I'm a reader when it comes to information intake. Unfortunately my partner has done this before with her dad so kind of knows what to expect, however this time round it's seen on a daily basis, closer to home you could say.  

Jual

Hi Jazz,

I have had 2 rounds of chemotherapy so far (3 weeks apart) and so far so good with 4 more sessions to go. The second round was better than the first as I knew what to look for in terms of side effects and had a range of strategies to deal with it so didn't have the same problems at number two. Found it helpful to record day by day each side effect and then emailed that to the oncologist and he was able to guide me on prevention the next time. After the first week I felt pretty reasonable and by the third week I felt back to normal. I found by about 7 -8 pm I am ready to rest and not as resilient as usual. Exercise helps according to the oncologist with side effects and have walked most days and gone to yoga. If you need chemo, I would suggest you look closely at the side effects and ask the nurses and oncologist for advice on how to manage them if they occur eg. Mouth washes for preventing sores, types of painkillers you can take, early use of Imodium for diarrhoea, prevention of constipation etc. and make a record and gather a kit of useful medications in case you need them. Obviously the type of side effects would depend on what chemo you have. Also with hair loss, I opted out of cold capping (decided against an extra 2 hours at a session) but found it helpful to cut my hair short and then when it started falling out, I had enough when my daughter told me she found it in her muesli! Got it down to a number one that day and haven't looked back. Also found the Look Good Feel Better workshop to be really good too. With regards work, I opted to stop work but so far could have done some work in the week 2 and 3 if I needed. 

All the best, Jual