Breast cancer diagnosis

Hi everyone

My name is Sam. I posted a couple of weeks ago as I was struggling with the wait for a diagnosis from the breast clinic after finding a crease in one breast particularly because my mum died just 3 years ago of metastatic breast cancer aged 64 and my gran died in 2002 of the same at 78. I am 42.

I got my diagnosis last Tuesday. I have grade 2 breast cancer in both breasts. The plan is for a double mastectomy in 2 weeks. Further treatment will depend on the lymph removal they will do during surgery and the tests on the tumours they will remove.

They gave me options for breast reconstruction but I am not comfortable with either and I am considering going flat.

My Macmillan nurse was supportive and my consultant was clear and understanding but this has hit me hard. I am struggling a bit to sleep and eat with the worry and stress. They can't tell me if it has spread until they have done the lymph and tumour tests. I won't get these results until the end of August.

I have two girls 8 and 4 years old and I am trying to be 'normal' for them. My husband is being great as are my two youngers sisters. My employer is very supportive. I have joined a support group and found out about some more I can join. I am trying to be positive but it is hard.

Thanks for reading.

  • Hi Sam, 

    Sorry you are going through this, it is so much to take in. I was diagnosed with breast cancer on the 28th June, had a lumpectomy on Thursday just gone and also sentinel node bisopy. I am waiting for more results now to see whether it has spread and what the next step of treatment is. I also have a 20 month, trying to carry on as normal. It is exhausting! Good for a distraction but by the end of the day I am emotionally drained and then can’t sleep. I think that’s normal for most people in the early days. 

    It must be very worrying for you based on your family history. All I can say is, you will get through it. Just take each step as it comes, I tend to go into a panic at bedtime worrying about the future.. but I try and break it down to each stage. It’s great you have an op booked for 2 weeks, super quick, before you know it you will have your results and plan of action and will feel much better and in control of plan.

    Whatever the results are, we can get through it. There are lots of people on here who offer amazing support and confidence. Just pop on here when you need to have a lift. 

    Sending lots of love x

  • Hi there ..

    So so sorry you've had to join our little club .. but only coz none of us really hoped we'd need it ..

    There's not much I can add to that lovely reply you've allready had .. and she's so right, there's lots of us breast lasses on here .. all different stages and treatments... all joined at different times ..

    I had a total right masectomy ... I was worried how id feel seeing it the first time .. but for me, I just felt o.k ... releaved really .. I had a grade 3 and masectomy in July 2017 ... l now look at my scar with pride .. it tells me of the journey I've been on.... and I think a small price to pay for the gift of time ..  

    Your doing all the right things .. join as many things as you can .. keep busy ... and try not to do the "what ifs" coz then it's overwhelming... go with feelings .. they are better out then in .. just in balance ... you can do this .. it's a scary rollercoaster ride... ups and downs .. but the more you look it in the eye .. and take it on .. coz cancer doesn't want us to do that ... it wants us to give up .. well look around ... wer all on that rollercoaster right by you .. hold on tight ... 

    There's another lass who helped me .. [@Jolamine]‍  .. she was my angel and helped me through .. she's had two bouts and a double masectomy... hope she pops by ...  

    Wer all here to support you ... Chrissie... here's to kicking cancers butt... 

  •  

    Hi Sam,

    I am so sorry to hear about your diagnosis. When you get a diagnosis like this it hits you like a sledge hammer. There are so many unknowns that it is overwhelming, so it's no wonder that you are struggling.

    Having a family history of breast cancer doesn't help, particularly when the outcome wasn't good. I have a family history too and have grade 1 Mucosal breast cancer. Do you know what type of breast cancer you have?

    I have had 2 bouts. The first was 10 years ago, when I had a lumpectomy followed by Tamoxifen. I had 6 lymph nodes removed at this time, but they were all clear. I had a new primary the following year and, had a double mastectomy followed by Letrozole for 6 years. Due to scarring from previous non-cancer related surgery, I was unable to have reconstruction.

    I am 70 and quite happy with that. I use an assortment of prostheses for different purposes, but still swim regularly and go to the gym. I'm not saying that I haven't had a few embarrassing moments in the early days, until I worked out what prostheses were best for a particular purpose, but we've got them sorted now.

    Waiting for your post-surgical results is always a worrying time, as our minds tend to run away with us and we tend to think the worst. With 2 young children, I'm sure that you are worrying about them, as much as you are worrying about yourself. I am glad to hear that you have good support in your husband, 2 younger sisters and even your employer. It is so much easier to deal with your diagnosis and treatment when you can talk about it openly to someone.

    It is always a good idea to write down a list of questions for your consultant before each appointment. It is also wise to take someone with you to as many of your appointments as you can, but particularly when you expect to get test results.

    It sounds as if you are doing all the right things. You are right to try to stay positive, but I know that this is not always easy. Joining a support group is a good idea, although you may find some better than others. There are a number of cancer related courses available too. Your breast care nurse should be able to point you in the right direction.

    I hope that all goes well with your surgery and that you don't find anything in your lymph nodes. Having said all this, I have no regrets about having my mastectomy. I felt more confident in that I had removed all that I could. I hope that you will feel the same.

    If I can help you with anything , you only have to ask.

    Don't forget to keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

     

  • Hi there, it's rubbish what this thing does to us mentally and physically, we're all here to help and support and share information and I hope my info helps.

    I had a grade 3 ductal invasive lump removed in December with a Lumpectomy, and as with you had family history, which after a gene test, confirmed BRCA1 variant.  I felt lucky to have kept most of my boob from the great work done by my surgeon in December, but then with the need for a risk reducing bilateral mastectomy, I had to rethink what I wanted to do about reconstruction. 

    After research and meeting some amazing ladies at a Show and Tell session from the Restore charity at the hospital I decided on a double mastectomy and reconstruction at the same time.  I am currently recovering from the op a month ago and have to say I'm really pleased I opted for this surgery. I had a DIEP reconstruction which is in effect your belly fat (I invested heavily in increasing mine before the op to get the most out of it ;o) ) which is then used to reconstruct your breast tissue. I won't lie, I was nervous but these surgeons really know what they're doing.  I would try and attend a session with Restore if it's available to you in your NHS trust, and I believe this would be an introduction via the MacMillian Breast Reconstruction nurses, it may help your final decision on reconstruction.   However, you can op for reconstruction at any time later should you decide on it, don't feel pressured to do it if you are not sure. 

    Hope my info helps.  Good luck and a big hug. 

    Julie 

  • Hi [@Millie123_]‍ 

    Thanks for your reply. It's good to hear from others going through this. I've had a hard couple of weekends first having to tell my dad who is still grieving the loss of mum and also explaining to my two girls what is happening to mummy this week as I will be having surgery on Wednesday. They broke into tears and it broke my heart. I also had my last day of work for who know how long on Friday as I go on long term sick leave which was also sad as I love my job and my colleagues are great. But I've had a lot of support from them as well as family and friends.

    Thanks for sharing your story. It helps to know I am not alone in this. I hope you are doing ok. I know what a handful having a toddler is and with all this going on with you too I'm sure that's tough most days.

    Sending you love x

  • Hi @Chriss

    Thanks for your reply and good advice. Trying to hang in there. It is a mad rollercoaster ride indeed. My surgery is on Wednesday so I am just getting ready for that. Thanks again for posting. It has helped me through dome tough moments these last few days telling family and friends that I am not alone in this as hard as it is.

    Lots of love x

     

     

  • Hi [@Jolamine]‍ 

    Thanks for your reply. I really appreciate you sharing your story. It has helped me talking to others about their experiences. I have a grade 2 ductal cancer oestrogen postive her2 negative in both breasts. One 3cm tumour on the left side and the right has several small tumours over a 7cm area.

    I have had a tough few days telling my dad, who is still missing mum, and my daughters what will happen this week as I will have surgery on Wednesday. It upset them and although I think we couldn't have told them in any better way (we used the guides the bcn gave us) it broke my heart to see them cry. My friends and family have been very supportive almost overwhelmingly so at times. I am used to being very independent so opening up to accepting help is going to be a big thing for me. I also had my last day at work this week to go on sick leave which was hard because I really love my job and I have no idea when I will be able to go back. I am just trying to get ready for the hospital this week and stay calm but I am finding myself to be very emotional.

    Thanks again for posting. I really appreciate it.

    Love Samx

     

  • Hi there ...

    What helped me that last week before op .. appart from mild anti depressants ... was counting the days , not about op .. but directing it at that uninvited guest that crept into my boob when I wasn't looking and saying ..  ??  Days till your getting evicted ... and that morning saying "your comming out today , you little bar stuard ...." think of that little alien in a dish ... gone .. 

    If your having lymph nodes removed... that arm will ache for a while ... loose clothing for after, like a man's shirt is ideal ... listen to your body .. it will tell you when to rest ... 

    I told my amazing granddaughter,  then 5 .. that the Drs were going to TRY to make nanny better .. young ones are amazing how they can cry .. then do something else .. they have the ability to cut off .. where us adults , it's 24 /7 in our heads ... when by accident a few weeks after op .. she pulled my tea shirt away .. she squealed at the top of her voice ... " oh nanny... how you gonna feed babies now "  still makes me chuckle 2 years on ... and that's on her seeing my flat scar ... she just occaisionaly asks if it will grow back ... I think she knows the tooth fairy .. now there must be a boob fairy ...

    I've been open with her about everything , but really gently in words she understands ... and think now there's nothing that fazes her ... I think they pick up how we feel ... and if we show them wer coping .. and even lighten a few things .. they will come through stronger ... when she asked why the Dr took nannys boob .. I just told her it was very poorly and them taking it away would help nanny get better ...

    I never felt a loss of a boob .. I just thought the surgeon took my boob but gave me something far more precious.....  time ... it just reminds me now of how far I've come ... and the journey to get here ...

    So keep in touch ... get some pink vertual boxing gloves and got in the ring ready to kick it's ***....

    Sending a caring hug .... Chrissie

  • Hi [@Julesamd]‍ 

    Thanks for your reply and for sharing your story. I really appreciate it. They did offer me the belly fat reconstruction you mentioned but I decided to go flat as I feel this will be the best option for me in terms of recovery. It's great there are lots of different options though so everyone can move forward with a solution that is right for them.

    All the best for your ongoing recovery.

    Samx

  • Hi LaurelLeaf,

    I am glad to hear that you have told your close family members. This is possibly the hardest thing that you have had to do. Despite the initial tears from your children, I am sure that you have done the right thing by telling them. If you hadn't told them, there is always the possibility that they would overhear something. Children have big ears and a sixth sense when it comes to something like this. They would be even more disappointed if this were to be the case.

    As  Chrissie has said, gentle honesty is the best way forward. I am glad to hear that your family and friends have been so supportive, even if you find some of the support somewhat overpowering.

    Be prepared for some people to pull back from your friendship too. This can be pretty upsetting, but often happens. Sometimes this can come from people that you would least expect, yet others who are maybe only acquaintances can really come up trumps.

    Do I take it that you still don't want any reconstruction? 

    You will probably feel better in yourself if this is so.  I am glad to see that you only have to wait until Wednesday for your surgery. I was quite surprised by how easy I found the surgery, as I was really dreading it.

    Has your breast care nurse.mentioned anything about bags for your drains post-ok? Some hospitals supply them, but not all. If yours doesn't, it is easy enough to make one yourself. This is much easier to cope with instead of walking about with 2 drip stands. I made 2 simple shoulder bags, but didn't need them in the end, as my hospital supplied them.

    You will also find it easier if you have a nightie or a pair of pjs which open down the front - much easier to deal with when the doctor does his/ her rounds.

    I shall be thinking of you on Wednesday and hope that it all goes well.

    Kind Regards,

    Jolamine xx