What a story I have to tell…
A routine mamogram resulted in diagnosis of Breast Cancer yet again in November 2014. In March 2011 I had DCIS of 750 grams, I had mastectomy and reconstruction. The lastest diagnosis of breast cancer of the other breast was a total shock.
In January this year I went into hospital and had another mastectomy and reconstruction.
Yesterday I was given the news that there were in fact two tumours. One grade 2 and one dcis is which is the beginning stages and what I had last time. I had my sentinel lymph node removed and four others and cancer was found in the sentinel node so it had spread. the good news is that hopefully the node has done its job and stopped it spreading.
I have to go back into hospital on the 24th of February for removal of all my lymph nodes in left arm for them to be fully tested to see if its spread. If it has then I have to have radiotherapy under arm. If not that’s one less thing!!! However. I need to have chemo ;-( one session every three weeks to ensure that the cancer doesn’t return then go on a cancer drug called tamoxifen for five years. The outlook however is good. Its just going to be very hard for the rest of the year… I am currently battling a very painful infection in my hip donor site and have two loads of high dose anti biotics because I need that clear before I can start the next phase. I am also waiting for genetic results to see if I have a brac gene which can also cause ovarian cancer. Hoping no but if yes surgery to have them removed.
I am looking for advice from any ladies who are going through similar things. I have heard that removal of all the lymph nodes can result in frozen shoulder and then you have to be exceptionally careful with your arm and the risk of infection.
The chemo I am due to have is FEC I think or something like that. What are your experiences.
I am a mumy to a four and five year old and will do ANYTHING to be there for my family. Grateful to connect with anyone to give support and get advice, knowledge.
Helene
xx
I have HER2+ and had a right mastectomy in Aug 14, I’m on FEC 75 and have really bad nausea and sickness, I’m on the 5th cycle on Monday 9th Feb and are dreading it but I have found that the steroids foe anti sickness are making me feel sick. I will only have emend an hour before chemo so hopefully this will make it better.
I had 5 lymph nodes removed and was numb after and had tingling when the nerves started to repair, you can’t have your bllod pressure taken on that side and just be careful with knives and gardening. I have found it ok and are back at work with the exception of next week which I go off sick for the whole week, my son is 17 so he has been a power of strength to me. It won’t be easy with young ones but it’s surprising how well you cope in these circumstances, I hope you manage ok but everyone is different so just remember this.
To get through what you have been through already means you are a strong person, good luck on the 24th and do everything thay ask of you.
You’ll be fine, best wishes Lynne
Hi Helene
I am Her2+, stage 3, diagnosed in November last year. I had a lumpectomy on 5th December and was lucky enough to have OSNA (where they actually carry out the pathology on your sentinel node during the operation). Unfortunately, one of the two they took initially was positive, so by the time I woke up, all my nodes from my armpit had gone. I had a drain in, which was not nice, purely from a visual point of view. It was awkward in the bath but it is not for long. Mine came out on day 6. My arm was numb but it is gradually coming back. A nurse told me that it would come back a mm a day, moving up towards the shoulder. I had a weekend away with my old flat mate from university and we measured, worked out the number of days and give or take, we decided it was almost accurate! My armpit is still quite numb and the only downside is I keep think I am missing with the anti perspirant! I started chemo on 30th January but not FEC, TC. First week was not easy but will return to work on Monday as almost normal now. Take all the sickness meds as directed, even if you feel ok. It worked for me - no sickness. It is easier for them to prevent sickness than to fix it once it has started. Take all the help that is offered, particularly with your wee ones. My family are quite grown up and able to fend for themselves but my advice to you would be, if you can get away with just one week out of three, be prepared and you will manage.
Hi Helene,
I’ve had a roller coaster start to 2015 - found a lump on 2nd Jan, had tests and saw consultant on 6th who told to expect the worst, had lumpectomy and full nodes removal on right on 16th Jan.
When I woke up my whole shoulder was frozen and arm + armpit numb. The drain didn’t help matters and the day after the op I was trying to do the exercises with physio but almost fainted so had to stay in hospital another night.
I was lucky and they took the drain out on day 2 so I got home without it but it’s been tough with the kids (4yr + 1yr olds) - I can’t carry or even lift the younger one so hubby has had to do all childcaring. It also took me 3 weeks before I could drive again.
The exercises have definitely helped although the 2nd set is very hard to start with. I also started seeing a physio last week so that should hopefully speed things out.
Numbness wise I haven’t seen any improvement yet but do get weird sensations and electric shocks going through the upper arm and I’ve also developed cording. I have found blue active gel to provide relief so much that I now put some on even before I do my exercises.
I’m now taken a step backwards as had a portacath inserted on Friday (in preparation for chemo (EC) starting on Tuesday) which has restricted what I can do again with my right arm due to the dressing pulling.
Feel free to ask anything specific xx
So how long do you have to wait from surgery and then beginning chem? It’s just so daunting I thought my operations were over :-(. X
I think the norm is 4-6 weeks but I’m starting at 3 weeks and 4 days as oncologist said no reason to wait and it fits nicely to the cycle timings (we planned a trip to see relatives over Easter and bought plane tickets before all this, doc says no reason fly I can’t fly given it’ll the last week of second cycle).
I know the waiting is the worst although it gets slightly better when you get a treatment plan xx
I had all nodes removed in june. Still a bit numb but kept up exercises so no frozen shoulder although problem in chemo arm. Careful of arm to avoid lymphodeama so far so good.
I had steroids reduced as they made me sick first round and was much better after that. I also reacted to the dompersomething…drug had emend hour before and 2 days after plus cyclozine so no sickness.
I worked with children as a childminder right through just treatment days and relief for a daily nap. Hooe this helps.
Hi. Thanks. Janine13 everyone reacts differently. Feel my body already been through too much. Your experience sounds quite positive I know it was hard but we’ll done you xx