Hi Gail. 

I was diagnosed with Grade 3 Brest cancer last October.  Invasive ductal and invasive lobular. 
my cancer was estrogen positive and HER2 negative. 
I have had a lumpectomy and then second surgery which was successful in removing cancer 

The waiting can be scary. 

I now have a treatment plan which although harsh will be doing its very best to prevent cancer returning in my body. 

have you been offered surgery 

this chat forum has really helped me gain perspective, just to talk to others who understand 

xxx keep in touch 

Norma 

Hi, I have just been diagnosed with Grade 2 ER+ invasive lobular Her2 negative also. At the moment they are saying it might be possible for a lumpectomy but consultant is concerned as the tumor whilst 3cm does not have defined edges, it looks possible it will need to be a mastectomy. Could I ask why you needed the second surgery if that's not too personal? My husband and grown children are hoping I will opt for the mastectomy as they want best possible option of all the cancer being taken away (they say this without putting pressure on me). I know the consultant promised to look after me but I would like to be as prepared as possible when having my surgery. Thank you so much.

Hi Gaillouise 

my tumor was around 3 cm in the end - initially consultant thought it to be about 1.2 cm so that was a shock     I had a lumpectomy at first but the margins were not clear and the consultant therefore wanted to take more to ensure no rogue cancer cells left behind.  I therefore had re excision. 

initially I was thinking just take the lot.  However what I would say is there are no guarantees with either.  My cousin had identical cancer to me some 30 years ago and she had a mastectomy.  She had chemo   Radiotherapy and letrazole for 10 years 

the cancer returned in her lymph nodes - she is doing amazing though and has managed this with tablet chemo for past 8 years 

I had the oncoxtype test which has determined risk of recurrence hence I’m on  course of chemotherapy with the preventative aim of destroying any potential cancer cells in my body   I will then have radiotherapy at site of cancer in breast and then letrazole for at least 10 years   I’m also having zometa bone therapy 

my second surgery re excision was successful and did return clear margins but it was a rollercoaster emotionally between surgeries 

I hope your consultant can answer all the questions you may have to help!you make informed decision 

xx 

Thank you so much for being so open and honest. I have a meeting after my pre-op tests tomorrow with my Macmillan nurse. Lots of questions bouncing around in my mind so going to write everything down. My husband and sons are not coping very well at the moment, it has only been 1 week since diagnosis, so i am hoping given time their feelings will settle. Whilst I am prepared for either option (lumpectomy or mastectomy) I feel I would rather know before hand what the surgeon will do so it is not a shock after. xx

All of what you are feeling is perfectly normal.  The waiting is the very hardest part.  Writing down all of your questions and thoughts is an excellent idea.  You will be given so much information it can be overwhelming.   Once a decision is made on surgery and then treatment things do become clearer.  You will have a focus then and a pathway.  It is the unknown that caused me equally sleepless nights and frankly to think the very worst. 

macmillan have a fantastic counseling team.  They will talk to you and your husband and your children too if this will help.  It’s natural to be scared but honestly there are so many treatment options nowadays. There is a chat forum on this site for partners as well. 
I have planned small goals which we work towards as a family.  A caravan holiday in September.  My treatment should likely end in august all being well.  A theatre trip next February.  I have been honest with my family.  There will be days when I feel dreadful. And that is ok. 

do you mind me asking how old are your sons ? 

am I right you have had your face to face meeting today    How has that gone ? 
xxx 

Hi my sons are 31 and 25 and so very different in both looks and personality. My oldest is very gentle and quite sensitive whereas my youngest is very factual and methodical in his thinking. My oldest is so scared that the wait for surgery will allow time for the cancer to spread - this is terrifying him. My face to face appointment with nurse is tomorrow so my husband is taking a step back so my son can come with me - our thinking is if he is more involved and can ask questions he might accept it better.

I am just trying to keep everything as normal as possible and will carry on working right up to surgery date. Luckily I work in a school so have 2 weeks off for Easter - I can prepare everything then - pj's, post surgery bra etc.

Xx

Hi. Been thinking of you and your family today.  I hope the appointment has gone well and you have been able to make some clear decisions.  I was also scared about the cancer spreading whilst I waited for surgery but as hard as it is the surgeons do handle this daily and would never put someone at risk by delaying things.  In total it was 3 months between diagnosis for me and my second surgery and my cancer was Grade 3 very aggressive.  The margins were clear second time round.  

wishing you all the very best and do keep in touch on here xxx

Thank you for your message. Pre-ops look good , just waiting on bloods. Appointment went well. We discussed the options of both surgeries. My son asked some questions and although he is still scared for me he kind of understands that we have to wait for surgery to fully discover what the next steps are. So many factors at play regarding lymph nodes, definite grading of cancer etc.

I felt so exhausted after the appointment, I just wanted to sleep. 

Came away with lots of literature which I will plow my way through over weekend.

Thank you. Xx

Hi Gail 

just checking in to see how you are ?  Do you have a date for surgery now 

xxx sending positive thoughts your way 

Hi - yes had appointment with Consultant on Thursday. It will be a mastectomy and a provisional date has been given. 

I feel a bit strange - not relieved but maybe not as anxious. I am sure I will get more anxious closer to surgery. 

Still unsure about treatment after but will cross that bridge when we get there.

I have opted for immediate reconstruction so hopefully that is possible.

Thank you so much for checking in with me. Xx

Hi Gail

just checking in 

have you had surgery or do you have a date ? 
hope you doing well 

xx Norma 

Hi Norma - thank you for checking in. I had surgery 22nd April. Mastectomy with reconstruction.

It has been a bit of a roller coaster physically. I seemed to cope well at first and then nausea kicked in.  I ended up at local hospital out of hours GP service. I felt absolutely dreadful for 2-3 days. No infection - they just couldn't get to the bottom it - possible reaction to anaesthetic, possible reaction to antibiotics. Thankfully they gave me super strong anti- nausea meds which helped.

I finally felt stronger and could lift myself from lying to sitting without help. Then my consultant has concerns over the scar healing. I am currently visiting hospital every 2 days to have it checked. I starve the morning of appointments just in case further surgery is needed. So far it is holding its own - fingers crossed.

So it's a bit of a mixed bag really - still very grateful to the staff for my treatment so far. Awaiting the lab results to see if further treatment needed - hopefully will get them on Friday when I go for check.

I know understand why patients call it a "journey" it is quite an experience. My family have been super supportive - especially my husband who hasn't left my side, cooked, cleaned, shopped. Xx

Hi Norma - thank you for checking in. I had surgery 22nd April. Mastectomy with reconstruction.

It has been a bit of a roller coaster physically. I seemed to cope well at first and then nausea kicked in.  I ended up at local hospital out of hours GP service. I felt absolutely dreadful for 2-3 days. No infection - they just couldn't get to the bottom it - possible reaction to anaesthetic, possible reaction to antibiotics. Thankfully they gave me super strong anti- nausea meds which helped.

I finally felt stronger and could lift myself from lying to sitting without help. Then my consultant has concerns over the scar healing. I am currently visiting hospital every 2 days to have it checked. I starve the morning of appointments just in case further surgery is needed. So far it is holding its own - fingers crossed.

So it's a bit of a mixed bag really - still very grateful to the staff for my treatment so far. Awaiting the lab results to see if further treatment needed - hopefully will get them on Friday when I go for check.

I know understand why patients call it a "journey" it is quite an experience. My family have been super supportive - especially my husband who hasn't left my side, cooked, cleaned, shopped. Xx

Hi Gaillouise,

It sounds as if you have had quite a time of it. Any cancer treatment is a "journey", no matter how straightforward it seems. I am glad to hear that your scar is healing without needing any further intervention and that your hubby is giving you plenty of support.

Kind regards,

Jolamine xx