Last July I was cleared having had a 48 mm grade 3 lymph node positive (3/14, carcinoma of the right breast treated in 2004 with right mastectomy followed by chemo and radiotherapy. Reconstruction in 2006.
Just over a month ago I had a biopsy and was told I had cancer 3 days before going on holiday. I returned and had bone scan and ct scan. The news I was told 10 days ago recurrence in the chest wall. The tumour is too large to operate and so chemo is starting again on August 1st.
Is anyone going through this and I’m really concerned about work yes I can have 6 months full pay but if the time goes over that financially we are going to have problems. Any advice would be appreciated please.
Also I am a lot more emotional this time, yes there is pain too which didnt have before.
hello, just wanted to say how sorry i am you are going through this . my story is a bit different, i had a recurrence 2 years ago and although it wasn’t focused on my chest wall, the muscle there is implicated and they couldn’t get clean margins.
i hope things work out for you hon
hi, just to say ho sorry i am…its a bummer, innit? i too, have just been diagnosed with recurrence in chest wall, and lymph nodes in neck. surgery is not an option as too widespread. onc tells me he wants me to have chemo followed by tamoxifen. i asked if i could do tamoxifen first, as apparently the original chemo hadnt worked, and (vain i know) i really didnt want to loose my hair again. he said that sounded logical, and agreed to it. the breast care nurse tells me that there are more options also, so its not all doom and gloom…whereabouts in the country are u? thinking of u, and wishing u well xx
Although Chemo made me very sick I did manage to work around it. I had my chemo on an wednesday and had the rest of the week off and most of the following, tried to get back in on the thursday then worked to my chemo, it really helped psychologically to reduce the anxiety around pay, what I would say though is I am not sure how effective I was always but as I have mainly an office based job and they reduced some of my work load it was not always apparent.
Sorry to hear you’re going through a recurrence. Mine was diagnosed June 2010 - 3 tumours in my lymphnodes including apical node and spread in soft tissue.
It’s horrible having it come back. I really had put it behind me, so it took a while to come to terms with it. I sympathise wholeheartedly.
Which chemotherapy did you have before? If you haven’t have a Taxane before, perhaps they’ll start with that? I had 3 rounds of Paclitaxel and it was exhausting but manageable.
May there be surgery after the chemotherapy, if it shrinks?
Best of luck with it. xxx Jane
sorry to hear about your recurrence. I also had spread to chest wall + skin on recon. It was pretty nasty but surgery +intensive rads got it under control for a time. I’ve since had more chemo due to further progression but feel well at present, 12montgs after my recurrence. But there is definately activity again in chest wall spreading round my side to my shoulder…
In terms of finances, due to your recent advanced bc dx, you will be entitled to some benefits which I have personally found really helpful. You will be entitled to Disability Living Allowance which is £125 per week. It’s not means tested + will be granted for 3yrs. You can get a mobility car but you would lose £50 per week of this allowance. You will be entitled to a blue badge + free car tax if you keep your own car. I also get employment support allwance. My hubby earns too much to be entitled to the higher, means tested amount. But I do get the contributions-based amount. Due to getting high rate DLA, I get the higher support amount- around £90 per week. You cannot get ESA if you are in receipt of SSP by tge way…
Hope this helps- speak to your bcn or mac advisor + they can arrange the DLA for you so you won’t have to even fill in a form + the money only takes about 10days to go in the bank. They will need to fill in the DS1500 form for you.
All the best with everything
Hi Jo and all others on here with a chest wall recurrence. It’s all very vague and not a great deal of information around or so I’ve found.
I was diagnosed initially in 2005, Grade3, 3.5cm lump, Her2+ Had Epi/CMF followed by rads and herceptin for 12 months. Now have this recurrence.
Oncologist expressed concerns that they may not be able to operate due to close proximity to pectoral muscle.Therefore having taxotere x 6 to shrink the lump first with a view to surgery. I’ve just had my 3rd cycle. I’ve been quite poorly on The Tax but it is working. I’ve had an ultrasound and after 2 cycles it has shrunk by over 1cm.
I dread the thought of them not being able to operate.It must be very difficult coping in that situation.
Good luck to you all. Will keep in touch to hear how things are going.
Thanks for the financial advice Tina.
Well Im going for my first tax chemo today (different drug to last time) - getting 3 then they will scan to see if shrunk enough to operate.
Every time I talk to someone I cry (I try not to but my eyes just fill with tears). This did not happen last time. It was my mum and dads diamond wedding anniversary on Saturday and I was fine no one mentioned it but yesterday I couldnt say goodbye to my family - I’m a mess.
Things can only get better NOT they are going to get worse.
Well went for tax chemo and was there for nearly 5 hours in total - a bit miffed but didnt happen as they couldnt get the line in so I’ve now got to wait to have a Hickman line fitted.
Think I will have to go and get another sick certificate from the doctors as I am so tired and weepy that I would be useless at work.
Hi Jo, I’m so sorry you are feeling so low at the minute. On top of it all for them not to be able to find a vein must have been devastating, you just want to get on with it don’t you.
Yes go and get another sick note, maybe see if they have someone attached to the Drs you can talk to. Do you have a breast care unit at your hospital? Our BC nurses are excellent. There are the helplines on here or Macmillan you may want to talk to.
I’m not going to preach, you’ve been there before so know how it goes but you will have better days and times ahead.
How big is your lump?
I live alone with 2 adult children who will have to contribute more if necessary. Money is an issue. Will I make it back at work in 6 months? I’ve tried to put it to the back of my mind and just focusing on getting better.
There are so many uncertainties this time. Last time a clear plan of action.
PM me if you wish.
Thinking of you.
Big hugs. x
I am really really sorry to read what is happening to you. I can’t offer you any advice, only solidarity: I am sitting here crying buckets due to a recurrence only three years after a mastectomy and despite the full whack of treatment (chemo, rads, Tamoxifen). It took half a year before the specialists here in Germany correctly identified the “cyst” I felt near my breastbone, during which time the new tumour had grown to 2 cm - larger than the original one. The only thing that kept me going (apart from my husband and young son) was my beautiful reconstruction made from a flap from my back plus silicon implant, at some cost to mobility. This may be so damaged by the whole breast radiation therapy I am now receiving that they have to remove it. I am so angry - and so afraid, as a G3 2 cm tumour recurrence is not a good prognosis. I get (apparently psychosomatic) chest pains at every radiation session, and am wondering whether to stop, as I don’t have any trust in the doctors and treatments any more. Keeping my fingers crossed for you, D.