What do you wish you'd known at the start?

You are in the right place for support.  So sorry to hear about your father. We have been through dementia twice with my father in law and my Mum so know what a burden it is and how unpredictable its course.

I was given timely and appropriate information throughout my cancer pathway and treatment.

Breast cancer is more well researched than most other cancers and the psychological support available for patient and carers is second to none.  Your Mum's breast care nurse will be there for you and available to explain or re explain the plan of action once the whole team has discussed your Mum's results and a treatment plan is put in place.

Please try not to Google ( other browsers are available!) and stick to this site or Breast Cancer Now as there is ample information.  Where I was treated i ended up with a shedload of information in the form of booklets info sheets and folders a lot of which were from Breast cancer Now)

Both sites have a phone line where you can discauss your concerns and get advice.

I don't think you will be blindsided in this situation and I'm so sorry if you struggled with communication with professionals when your father was ill.  Your Mum is very lucky to have you looking out for her.

Hi

One thing I wish I had done/not done was trying to look ahead too much - your mum hasn’t had a diagnosis yet , and so it may be that she has a benign lump , if cancer she may not need radiotherapy , there are many different types of breast cancer and treatment depends on so many things. I was rushing ahead with my diagnosis and planning on when I would be able to get back to work etc but my treatment plan changed so many times that everything I initially thought went out the window. 

My suggestion for your mum is that if it is cancer , would she want a lumpectomy or a mastectomy ? If the cancer hasn’t spread to the nodes she would be unlikely to need radiotherapy (if she had a mastectomy) This was the situation with my mum (she was 69) so her treatment was pretty quick , diagnosis , operation and then some medication for 5 years. 

How is your mum feeling ? Has she spoken to you about it much ? Being there for her is a fantastic thing to do , and as has been suggested the helplines are really useful. 

Very best wishes

Jo x

Hi I am 67 and was diagnosed with breast cancer in both breasts in May  after biopsies Etc . I had lumpectomies and about 8 weeks later I had 15 days of radiotherapy in the left breast and 20 days on the right .  (I needed an extra 5 days booster on the right breast  as that had the larger and more active lump .) I was fully informed all the way and supported by the breast  care nurse . I discussed chemo with the oncologist before starting radiotherapy and I decided from that discussion that the risks of cancer recurring without chemo were minimal so chose not to have it . I now take Letrozole as my cancers were both hormone receptive and will have 6 monthly injections for 3 years  to help stop my already thinning  bones . ( I have osteopenia ) as well as calcium and vit d prescribed tablets . After the initial shock of cancer diagnosis I realised that so many women have been treated for BC successfully and I feel confident that the treatments available these days give great outcomes for so many women . My take on this experience is that now I’m in the system I will be kept an eye on and that gives me reassurance .  Good luck to your Mum . 

Hi Jo

Thank you for this. I’m afraid worrying about the future and planning ahead (sometime’s unnecessarily) is one of my. Biggest flaws! Thank you for telling me that her treatment plan could change, that is very interesting.

I’m sure you can imagine how much we are hoping it is benign!!! But the way the (very lovely) nurse at the clinic was talking about the next steps, she seemed pretty certain. She did say ‘if’ a couple of times… but I guess I was struggling to take information in at that point haha! I didn’t go in with my Mom for the exam, but from what she said because it’s an irregular shape the doctor said it didn’t look good. So I guess, how does that saying go? If you prepare for the worst the best you’ll be is disappointed! Or something like that.

Can you choose to have a mastectomy? When we spoke to the nurse, my Mom said that a mastectomy wouldn’t bother her that much, and the nurse said the doctors like to preserve as much of the breast tissue for psychological reasons. I can understand that, but if it was me, I’d go for whatever the safest option is! The nurse gave us the impression that you don’t really get to choose how much they remove as it were… but then, like I said, I was having trouble focusing. Thank you for sharing your mum’s experience, my Mom is 67 so that gives me some idea at least.

Mom is doing okay I think, but she’s always been so brave it’s hard to tell when she’s having a hard time! We have spoken at length about it. After my Dad’s dementia we really do realise the importance of communication! Thank you for your kind words, I’m afraid I feel pretty useless right now, but I figure the best thing I can do is just get the research in!

Thank you again for replying, the information has been very useful! x

Hi Morkie

Thank you for sharing and for your kind words!

My mom also has a bone condition so I am very glad you have messaged!!! She has a genetic disorder called x linked hypophosphatemia. Basically her kidneys don’t absorb phosphate and she has very weak bones (and all the side effects that go along wit that, as I’m sure you know!)

Did the treatments affect your osteopenia? Is it common for radiotherapy to affect your bones? Were there any extra precautions or treatments you were given during the treatment?

Sorry to bombarde you with questions! Because my mom’s condition is quite rare, I am always so concerned that her doctors won’t fully understand how any treatments will affect her and her fragile bones. (While medical professionals are so kind and willing to learn, sadly they can’t know about every disorder under the sun! So it’s understandable, but still frustrating).

Vitamin D tablets won’t be suitable for her, because her body just doesn’t absorb it, so I’m very glad that you have made me aware that that is what they have given you. Over the years so many doctors have tried to give her vitamin D because they just don’t understand she doesn’t process it! So this is something I would very much like to make them aware of before they start any treatment… if they start treatment.

Thank you again! I must say, I feel so much better chatting to all of you!

All the best,

UrsaMinor

Hi - if your mum wants a mastectomy I would push for it , I know the process now is to preserve as much breast as possible, and I perfectly understand that , but there is a 20% chance they don’t get all the tumour with clear margins in a lumpectomy - I asked for a mastectomy initially and was told no need etc , and my surgeon did do a fantastic cosmetic  job of removing the tumour - however no clear margins around the cancer (needs to be a 2mm cancer free margin around the cancerous area removed) and two further operations still got no clear margins so I ended up with a mastectomy anyway.....

Jo xx

Hi

when I had my biopsy the doctor was the same , saying the irregular lump on my right breast didn’t look good . I think they do have a good idea to try and prepare you just in case . The lump in my left breast was smaller and different although treated the same .  Radiotherapy didn’t really affect me that much . I kept putting E45 cream on nighty and morning and wore a bra to bed (from after my op and radiotherapy and a few weeks longer !)  It’s tiring going up the hospital everyday although you have weekends off . I drove myself some of the time and I had a rota of people in case I felt I wanted a break from driving . Radiotherapy hasn’t seemed to affect my bones but the hormone tablets can cause bone thinning . I had hormone receptive tumours so the hormone pills are given  to reduce the cancer coming back . I was told that having a mastectomy doesn’t reduce the risk of cancer coming back  but does avoid the need for radiotherapy . Hormone tablets will still be needed though regardless of what op is given . The consultants are very knowledgeable and will give you all the info you need to help you make any decisions . My scars on each breast are hardly noticeable . I could have had breast reduction surgery with uplift but chose not to as it was a bigger and longer operation . When they do a lumpectomy they take out more tissue around the tumour site and test it as well as some lymph nodes . Both the margin around  the tumour site and lymph nodes were clear for me hence why I didn’t go down the chemo route . My radiotherapy finished end of October and I have been fine . I do think that I have been more tired ich is normal they say once it finishes for up to 3 months . I have MS so tiredness affects my weak side more anyway .  One thing I did do In the early days was take a friend or relative to appointmts and write down what had been said to me and I looked back on this info quite a lot . The booklets they give are great as well . The worse thing I did was google but I’m one of these people that h to know the worse and hope for the best . I also spoke to fellow dog walkers and discovered so many ladies who had gone through  BC years before . It seems like it’s an exclusive club with many memrs !  Whatever the result is for your mum I’m sure she will be ok . I didn't take on any commitments during treatment and went  to bed early and kept away from germs from the grandkids so I made eve radiotherapy appointment .  I had a contact number for my breast care nurse and she saw me a few times as well so support is great for women with BC. 

Sorry about the smiley faces creeping in to my reply .

That is so very interesting, thank you so much!

My Mom (who is reading these replies too) found this really useful! She’s said before that her breasts were never her best feature, and she’s totally comfortable with the idea of a mastectomy. She has a lot of tattoos and says that she’ll just get a nice tattoo there instead! I think, for me it would be a bigger deal to have a breast removed, but in all honesty, I’d do it too just increase any chance of being safe! Especially with the possibility of further operations. Mom has had a lot of op’s in her life, so she’s not so very fragile, but she has had terrible reactions to the anaesthetic so I guess there’s more to weigh up here than just a lump!

Thank you so much for your reply! x

Hi & welcome to you and your Mum, you're in a good & supportive place.

Things I wish I had known

- be prepare to challenge your support team (they may not always know what's best for your Mum as they will never really know her like she knows herself) and ask for help when needed - don't assume you need to put up with pain & discomfort

- ask your Mum what she wants from you, don't molly-coddle her (I have a partner who can be a little suffocating at times)

- ask lots of questions of your support team, that's what they're there for, and there's no such thing as a stupid question

- sounds odd but try and have fun, you'll both be meeting lots of new people at treatments and on this forum, make the most of it

- take each step at a time, there may be several stages over a number of months depending on your mother's  cancer & treatment type, better to focus on what's up & coming rather than what may be in X months time

- Don't be too put off by bad experiences on here, we're all different and respond in different ways to different treatments, a lot of people who sail through don't feel the need to post

- one thing I did know and which really helped was getting support from friends & family (attendance at appointments, arranging things to look forward to etc.) and having a positive mental attitude... that last one has been a saviour!

- don't buy too much that you may not need (I still have unused Imodium!) but buy what you need when needed.

Good luck to you both

Sam