New & apprehensive

Hi to all,
Im new to this site, i was diagnosed after a biopsy 2 weeks ago with high grade DCIS, some starting to become invasive and a suspcious lump under my arem, so have to have a mastectomy, axilla clearance and then whatever follow up treatment is necessary. Its come as complete shock as theres no obvious lump, even my own Dr didnt find anything. Its all because i happended to mention i have on occassion squeezed my boob and a bead of fluid came out.
That was it, no leaking discharge, and not always when pressed so i certainly want expecting anything like cancer. Ive been in a malestrom for the last 2 weeks, not had much info, but am having the op this friday…Totally stressed, live alone with my teenage son although do have a boyfriend who lives about 40 miles away, but no family around.
Started a new job a month ago, so wont get company sick pay, so moneys already a worry…I am hoping to go back asap, can anyone give me their experiences of the sort of thing im facing.
I know everyone here ahs their own worries and concerns, but anything that can help me on the next few weeks, whether expriences, advice, tips or just a fellow wiltshire-ite :slight_smile:
Many thanks
Artemis

Sorry to learn you’ve joined our number. Have you been working previously? I didn’t get sick pay, but did receive SSP for six months (just finished). Everyone will get on your nerves by telling you we’re all different. I could have worked half my chemo, but didn’t because I work in a clean room. Went back for six weeks after my chemo, two months off after mx and now thinking of going back until my reconstruction. Talk to your employer. They may be willing to help (mine weren’t), and shouldn’t sack you just because of your disability. Macmillan should be able to advise you as to which benefits you may or may not be able to claim. And some depend on where you live. There may be help available for things like wigs and parking…

Good luck,
Margaret X

Didn’t want to read and run so I would like to say good luck x

Hi there,

Whether you can work or not depends an awful lot on what your job is as well as what side effects you have during treatment. If your cancer is grade 3, the likelihood is you’ll be offered chemo. If it has in fact spread to the nodes, then chemo for certain, plus probably radiation therapy.

My sister in law just had a lumpectomy for grade 3 carcinoma with micro-mets, followed by 6 cycles of FEC-T, and three weeks of radiation.

Apart from the time needed to recuperate from her surgery, she was able to work through all of her treatment, only taking a few days off each cycle, but then she worked in an office, and could work part time, or disappear home if she got fatigued etc, and her employers were totally accommodating.

In my case, I work in healthcare, visiting folks in their homes, and I was strongly advised just to take the whole period off, and concentrate on regaining my own health. Here in Canada, I am on Long Term Disability pay for up to two years, which is 2/3 my regular pay. So while things are a bit tight, I am in the fortunate situation of being under no financial pressure to return to work before I am good and ready!

There are people on here who do manage to continue their fulltime work virtually without pause, and look after young children.

I take my hat off to them!!!

NB. For some people, the "normality"of the workplace is what gets them through this fun-ride. I know there are days when I feel totally like the guy on Close Encounters, I get so pre-occupied with cancer. It’s a wonder I am not building breasts out of mashed potato!!! :wink:

Hi to all who replied…thank you :slight_smile:
I dont know anything relating to the grade or number of the cancer, all ive been told is what ive written here, i guess i will have a better idea once theyve taken it all away. Ive worked for the last 20 odd years so have the NI contributions to get SSP, my job isnt in danger, its just i havent been there long enough to get the higher rate of company sick pay.
I hope to take as little time off as poss, i love my job & as its admin wont be strenuos although is in a big office…If i have chemo am i more likely to get any bugs going around??.
I have so many questions yet have been given very little info so far. I am now trying to figure out what i wil need in hospital, and how long im likely to be in. is tere a standard, im a bit wary about coming out with drains in as the only way i can have help once i leave hospital is to stay with someone but its 40 miles from my own home…
Anyway, hope that being here will give me some ideas of what lays ahead…
Many thanks again
xx

Ps I meant to say i havent a clue what all the lettes and acroynyms mean…i will have to study up on them…

Sorry, … “high grade” cancer is probably grade 3 (3 being the highest grade, ie most aggressive grade of cancer). FEC-T is one of the common regimes of chemotherapy, the letters standing for the chemicals used. You normally get chemo once every three weeks, ie in three-week “cycles”, for a total of 18-24 weeks. There are other drugs used, and the timing can differ depending on your diagnosis and preference of your oncologist.

Once you have had your surgery they will know for sure what “stage” of cancer you have, ie whether it is spread and how far, or how advanced it is.

This site has many pages of information on your diagnosis and pathology etc, quite aside from input from others on the forum.

Once you have had your surgery and get your results, you will know much more clearly what you are dealing with, and you can work out a plan with your oncologist. The early stages, always waiting for results, are the hardest days/weeks.

Some people find their immune system gets a battering on chemotherapy, and have to be careful around normally innocuous bugs and illnesses, but it is normally just for a few days each cycle, and personally my blood counts have stayed very good all the way through. There are injections they can give to bolster your white cell count if needed. They check your blood before each treatment and keep a close eye on things.

Your hospital should give you an idea of how long you have to stay in hospital for your surgery, and if you’re likely to have drains on discharge. I only stayed in overnight. Some people (not usually) come home same day, and some seem to stay for several days. I didn’t need any help with my drain. Had one for my lumpectomy and again for my mastectomy two weeks later.

Hope that helps. Do you have a number to call and speak with your breast cancer nurse. They are well used to people not taking everything in at visits, especially when you are shocked. That’s why its always a good idea to take a second person to help listen and take notes. I find when you are digesting one phrase or piece of information you can totally miss the next half dozen!! It doesn’t have to be a family member … a friend maybe?

It’s tough that you don’t have much in the way of family support. Perhaps your son will surprise you! Do you have any friends who can support you at all? If nothing else, prepare by stocking up on easy meals that just need heating. If you are house-proud get everything spick and span before your op. Teach your son to use the washing machine!!

Keep asking any questions you have, and we’ll try to help …

Anyway, best of luck with your mastectomy on Friday!! xxx

Good luck Artemis! I’m just starting chemo and I’ve decided to work extra hours these two months to qualify for SSP as I am a very very part time worker (sort of like a bank nurse), better to work longer hours when I know I am going to be relatively well. Saving the 6 month mortgage holiday for after Christmas when I know we’ll have lots of bills!

hi artemis
i would just like to second morwenna, such a very informative post, and say i do work full time as well as having chemo but ive just decided to drop to 4 days a week to get more rest. ive had what youre having done and it is manageable with no complications, if i was ill it would be different.
welcome
angie xx

Hi Artemis,

You have already had lots of really good information from others here. But as you asked about managing after surgery I would like to suggest that you do whatever you feel most comfortable with.

I had two ops and was only kept in for one night on each occasion. Came out with drains following my axilla clearance and managed these myself (by choice) although the District Nurse came to remove them after a few days. I really wanted to be in my own home as I felt I would be more comfortable (particularly in my own bed). I had no family help but made sure I had stocked the freezer, changed bed linen, gone round with the hoover etc. in the days just before surgery. It is all doable with a very small amount of planning. You might be surprised at how quickly you bounce back. Good luck with everying.

Gill

Ah thank you all…especially the reassurances. I suppose as you say until ive had my surgey then i dont know what else is required, its just hard to accept that its serious as there arent symptons etc…It seems to have just “appeared” yet all hells broken loose though i feel and look like i always did. Ive not told many people as i dont want to see that look in their eyes…
Only 2 days to go and im dreading it, i love my body, and being fit, healthy, doing everything for myself. not being able to kick box, cut the grass or even carry out the bins for a while is going to frustrate me which will make me feel bad anad then having to be watchful for the rest of life re lymphodema…I just havent accepted it yet i think so cant see anything positive at the moment…
I just wish it was all a bad dream, its hard staying positive for the kids sakes when im so angry, sad and worried too…
But thank you again to those that have responded…
Artemis