Hi Guys,
I am 24, had a bi lateral mastectomy and sentinel node biopsy on 2th July, then auxiliary clearance 23 July on right side. I had grade 3, 17mm lump on right.
I have just been to see me BCN, she told me my recent auxiliary clearance found only 1 out of 34 with cancer cells, Not including the sentinel node which came back positive previously and led to the clearance.
She also said my Oncologist appointment is not until 5th September. This seems a long time away, as it will be 6 weeks from my operation. I was originally told i would need Chemo 3/4 weeks post Op, now I cant get an appointment until September. My Surgeon is away on holiday, so can not speak to him. How long have others waited after surgery to start Chemo or to see the Oncologist? I am also having my eggs harvested, which has to happen 1st but this will be in the next couple of weeks, so not a reason to wait.
Feel like i am sitting on a ticking time bomb again, after being told how aggressive it is and how urgent. Now it seems fine to wait 6 weeks!
Anyone else’s experiences would be great.
al xx
I felt the same and I had a five week wait…
hugs to you xxx
I am pretty sure that you have to wait 6 weeks post operation ( I did and everyone else I know did as well) . It’s to let your body recover from the lymph clearance which is quite an invasive operation.
If you are really worried you could ask about starting to take tamoxifen straight away - I did . You have to come off it for the chemo but at least it will make you feel better in the meantime!
Good Luck!
Alise
Hi Al
Firstly, I am so sorry you are going throught this at such a young age. I know how you feel about sitting on a ticking bomb and you want things to progress quickly, thats only natural. But taking your age into account, it is essential you harvest your eggs before any further invasive treatment is carried out. I would push to get this done asap.
My surgeon said it was safe to leave my surgery for a mth or 2 after initial diagnosis, before we started anything as I had said I wanted time with my husband on holiday. As it turned out I had a wk away and my op the following wk. I suppose what i am saying is that though you want things to move fast, its ok to delay for short times spans.
I had my 1st op late oct 06, then 2nd op (ax clearance) in nov 06 and saw onc in early Jan 07, chemo followed on 9th Jan. The onc needed time to colate all results and had had to wait for some to come back from a diff health authority.From 1st op to onc appoint was 9wks, with the delay in results, but chemo was started less than a wk after this app.
Also, don’t under estimate how much your ops have taken out of you, and it is good to give your body some time to heal before the onslaught of a chemo regime. I believe 6 wks is the norm for this, and I must admit, my 9 wk wait was rather stressful so I think I know how you are feeling.
Hope this helps, good luck
Irene
Hi Al
Have an idea how you feel on this one. I was daignosed on 5th June , mas, axilliary clearnance and reconstruction on 11th June and counting the days until chemo started .I have quite a lot of lymph involvement so wanted to start zapping the little sods .Started on 20th July with first chemo and felt it was a long wait. I know they had to allow the wounds to heal.
I am 37 so i didn’t harvest eggs - perhaps that delays things a little but the waiting is really hard. Hang in there.
Good luck with the egg harvest.
MuddyXX
Hi Al
i just had a conversation with an oncologist about this. i’m having chemo before node clearance and one of the junior doctors implied that chemo had to start v.v. quickly. the onocolgist i saw today said that isn’t true. they have studies to show that recovering after surgery before chemo is a good thing. holidays are good she said. so, that is what i’m doing…taking a deep breath and going on holiday.
all the best Al
xxx
I had my operation on 1st May. Saw my oncologist for the first time two weeks later and then saw her again when I started chemo on 31st May. I needed that four weeks to recover from the operation before starting chemo, however it was nice to meet the oncologist before chemo started so I knew what to expect. She also pushed through my scan dates so i had them before chemo (if I hadnt seen her these would not have got the appointments in time as my surgeon had forgotten to do the referrals) I also had a one hour chemo chat with the nurses on the chemo ward before chemo therapy which was really helpful
Jools
Thanks Guys,
That’s such a relief to get all your reassurance, sounds like 6 weeks is normal. It just seems a long time when they tell you you are urgent, guess their time scales are different to mine!! I get what you are staying about recovering from operation. I am feeling fine but do have quiet a lot of fluid build up.
Think i just need to make the most of the summer, maybe a holiday is a good plan.
Thanks guys for all your support.
al xxxx
Hi Al,
Just to add my ten pence worth! I was diagnosed in March, age 34, and had my mastectomy and total axillary clearance on 29th March. I didn’t see my oncologist until 30th April and actually started my chemo on May 14th. To be honest, I don’t think I would’ve been healed properly had it been any sooner. I had a couple of rogue stitches that refused to dislove and ended up having to have then taken out with a little scalpel. Anyway, this meant my wound took longer to heal and it was touch and go whether they were gonna let me have my first chemo as it still wasn’t totally healed.
I think that although it does seem like a long wait it is perfectly ‘normal’ to wait about 6 weeks to see the onc. Good luck with the eggs harvesting, I was hoping to have mine frozen as we don’t yet have children but unfortunately as my tumour was hormone receptive it wasn’t possible.
Take care and be sure to let us know how you get on,
Kelly
-x-
Thanks Kelly,
It does really help to know other peoples experiences. Think I just have to look at it in a positive way that i get the summer off! well off appointments anyway. Going back to work on Monday and cant wait. The IVF stuff should start next week, fingers crossed. Really sorry you could not have yours harvested, I was told as i am young its quiet likely that my overies will withstand the Chemo, so fingers crossed for you to. I am just doing IVF as an insurance as i have time. The down side to my BC not being hormone receptive is it is more than likely it is genetic. Which is a pain, but least i know about it now.
I am making the most of the extra few weeks of feeling fine. I have been back on my horse today and feel great. He is very young and i bought him 3 days before i got my diagnoses. Its been the best thing as he is a project for me to concentrate on.
Thanks again everyone.
al xxx
Hi Al
Lovely to hear you in such a positive mood today. You are right, an outlet is essential and your horse will keep you fit too. If you get away, enjoy it and TRY to put BC behind you for now.
Irene