Disabled wheelchiar user, diagnosed and worried

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Hi, I reveived my diagnosis this week, Wednesday 1st March.

I am 61, just had routine screening which found small lump, doctor and I cannot feel it as deep inside right breast.

 

Overall its good news as can be sorted.

its Grade 2 invasive primary.

 

Plan is remove growth and one lymph node for testing.

 

then month later three weeks radiation

then drug Letrozole for five to ten years to stop eastrogen causing more growth etc. Tipping me back intzo full blown menopause again!!! Think this upsets me more then anything as just got through this and had rough time.

 

I am more concerned about coping with all this as have spine injury, lots other health issues and disability.

i have carers every day, and adult son lives at home.

 

as on right side any affect on arm causes problems with my mobility and managing everything.

 

I will see nurse on Tuesday.

 

Do they take note of all health issues, disability? Having carers?

 

Day surgery is planned yet I have asthma, allergies to certain drugs and chronic pain issues which have caused previous small surgeries lots problems.

 

I have spent the last three days telling family and friends, its been exhausting helping them process this, some so upset no matter how posiive I say it.

 

i am not sleeping well, feel so tired.

 

I have not cried, feel numb, overwhelmed with thoughts of how on earth I will cope. Will my body cope when already struggling?

 

i have read all booklets given to me and some threads on this forum, tried to find people who already disabled and gone through this but cannot.

 

I am a posituve women, have good sense of humour, advocate for other disabled people, love helping others.

 

But struggling with immensity of all this at the moment…

 

So come here just to share, off load a bit, and know those of you been through this can help.

 

sorry for long post :slight_smile:

 

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Meri

 

Wlecome and I know it is not a place any of us would want to be, but there are lots of lovely ladies on here who will be able to help and support you through your journey.  Many like myself are the other side of diagnosis and active treatment, so we totally understand what you are going through and there are lots f other ladies who are waiting for their diagnosis or just starting treatment.

 

With regard to your diabilities I am sure that in any treatment plan they will take all of these into account and determine the treatment plan based on your cancer and disabilities because they want to treat you to make you well again.  I know when I was diagnosed I was concerned that I have my partner at home with MS, the consultant immediately asked if there were any care plans/support that they could provide me to ease the worry of that whilst I was having my treatment.

 

With regard to the radiotherapy treatment, I had 15 regular and 5 booster sessions, I was born with spina bifida and also have a curvature of the spine, when they were measuring me up and positioning me each day they were so good at easing me into position so that I was not it any discomfort.  I have seen special chairs etc in the room which they use for people who are not able to lie flat so I am sure they will be able to sort something out for you. 

 

What you have been told is a lot to take in all at once, give yourself time to digest all the information you have been given a little at a time. 

 

One thing, I have oseoporosis of the spine, which was discovered about a month previous to my diagnosis, which like you was as a result of a routine mammogram.  Mine was grade 1, tubular and I am hormone receptor positive but the good news was that it was totally treatable although it did not feel like it at the time…  I was supposed to be on Letrozole because I am post menopausal, but because of this they put me on Tamoxifen because it is kinder to the bones, I dont know what your bone density is like and if it has been tested, but I would imagine that it probably something they will check before you start on your tablets.

 

Please never worry about how long you posts are, you are in a lovely safe environment here and we all get you, we will do what we can on here to help and support you.

 

There is a thread Going through treatment which you might find useful to have a look at.  There is a section on there called radiotherapy which might be of use when you are coming up to commencing that part of your treatment.  Also look for Progesterone, hormones and fluffy stuff, lots of ladies on there and we talk about loads of things, we rant, rave, cry, get scared and someone is always there to help put us back on the right road again, and we laugh lots on there as well.

 

Helena xxx

 

 

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Oh Meri,it’s such a horrible scary time when first diagnosed.So much to get your head around and you have additional worries because of your other health issues too.You can ask to stay in overnight (or longer) after your op if you feel this would be better for you some people recover more slowly after anaesthetic so this is not unusual ,discuss your concerns with the nurse when you see her .As for telling people I found that the worst thing of all,emotionally draining and I got upset every time but ended up trying to comfort others …Lots of support here from people who understand .Jill

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Hello Meri. Sorry you have to join us but as you have already found out there is lots of support here from a fantastic community of people who will help you get through this. Jill was a month or two ahead of me in diagnosis and it was one of the threads she started that brought me here. We have had some laughs as well as going through anxious times together.

 

It seems horribly unfair that you now have this to deal with this diagnosis along with all the other health issues you have had to face but maybe those prior experiences will give you strength to get over this additional hurdle. You certainly seem to be apporaching things in a very positive way. I agree with you that there isn’t any point in getting angry … a waste of energy and a time when you are probably feeling drained anyway. 

 

Do not feel guilty about having had previous mammograms and scans. This is not your fault and you did not cause your cancer by following sensible medical advice. The number one factor in the development of BC is age and alas that’s something that none of us can avoid. 

 

The sentinal lymph node biopsy might give you some short term issues with using crutches but depending on where your tumour is they can sometimes remove the node via the breast incision meaning you won’t have to have another incision in the armpit. Have a chat with your breast care nurse about this. I did a holistic needs assessment with mine which asks questions about your home and support situation so maybe some solutions could be identified from that. Perhaps in your case an overnight stay in hospital might be worth suggesting just to see how you get on and reduce any additional anxiety you might have about coping in the 24 hours after surgery. 

 

 I’m just over a year from finishing treatment and feel pretty well now. The thought of surgery terrified me but I can honestly say it was nowhere near as traumatic as I expected.

 

Hope you stick around and let us know how you get on.

 

Ruth xxxx

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Hi Meri ,2 ladies stayed in overnight when I had my op (on day case ward) and I was given the choice to stay o/n if I didn’t feel ok.Wish I had actually as my husband is a rubbish nurse and seemed to forget I was there once he’d helped me up the stairs to bed!!I very much doubt it will delay your op , you should def ask for O/N stay from the off so you don’t have the extra anxiety .The Community Champion thing is part of the way the forum runs ,certain of us who have been around for a while have been asked to help welcome new people to the site and point them in the right direction for help and support .

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Hi Ruth how are you doing ?

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Hi Jill, I’m not too bad thanks. Looking forward to spring arriving properly as the winter has seemed rather long. One of the positives about having treatment over the 2015/6 period was not commuting over winter. Alas it’s made this winter of having to go back to commuting all the more painful. Hope life is good with you. xx

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You are wonderul bunch, like minded to me in a way, after spine injury I went through grief, depression etc, but found so many other disabled people who helped me so much, so I know peers are best support at crunch times and then we too can help.

 

I am a disability campaigner , got an MBE for all my voluntary work and achievements fighting crime against disabled people. But most of us never get any reognition, we just do it because we are that type of person.

 

I am also trained counsellor, only due to wanting to assist others through lifes journey.

 

I believe its so important to reach out when struggling, so that what I am doing.

 

reading peoples stories and advice on this forum has helped keep me going over this past week.

 

Ladies my breast is still so sore, bruised and stabbing pains since two biopsies. 11 days after procedure, at this moment using a gel heat pad to ease this.

 

Is that others experience?

 

I found doctor did not prepare me for biopsy process, I did not feel anything during process, except when nurse pressed down to stop bleeding which ruddy well hurt!

He did not tell me he would cut my skin, I just thought it was needle biopsy, but it was’nt.

He said nothing about aftercare, bruisning, pain, nor did nurse.

 

No one tells you bruising goes down to nipple and it turns black! :slight_smile: I must admit it is funny now but at the time quite concerned.

 

I have breast fed four kids, been a breastfeeding counsellor, so know anatomy thank fully but not been told what type of cancer this is, how do you find out?

 

I will ask that question of nurse as most of you have lot more info then I do.

 

Are any of you also facing benefit issues, social care stuff?

 

It horrendous already as disabled person so many assessments and red tape to go through, I am just ending a Care review, have financial monitoring about to start on money I get to pay for care, Care charges review, have to transfer from DLA to PIP, and dread losing my Motability car.

 

Adding in all this aditional medical stuff is overwhelming.

I already have 8 Consultants, with numerous hospital appointments.

 

So feel a bit besieged! :slight_smile:

 

I try to deal with things one at a time but now have to juggle all this.

 

Eeeekkk! Can I do a virtual screem??? LoL :slight_smile:

 

Well at least I still have my sense of humour, thank you for this space to share, I value it so much.

 

:slight_smile:

 

 

 

 

 

 

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Not surprising you are overwhelmed with all the other things you are dealing with ,having BC alone is enough to send you into complete meltdown .My biopsy gave me more pain and bruising than my actual op and I don’t think it is unusual to have discomfort for a while .I was told the type of cancer when I got the results of my biopsy.Write down any questions you have and don’t leave til you get the answers !!If you can take someone with you to the appointment it helps to have someone else listening to the information as it is not easy to take it all in I also asked the nurse to write down some of the things she was telling me .

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Hi Meri , sorry you are feeling overwhelmed ,we all do in the beginning . I had IDC and DCIS ,same as you, it’s the most common type of BC . Most women have DCIS as well invasive cancer .DCIS is cancer that is still contained in the milk ducts and hasn’t yet developed the ability to spread(and may never spread ) .I had an area of invasive ductal cancer surrounded by Ductal carcinoma in situ .They like to remove both to reduce risk of reoccurrence .After your op they send away the area they have removed for testing and it takes about 10 days to 2 weeks to get the results back .Sometimes they don’t get what they call “clear margins” i.e. there are cancer cells close to the edge of the area they have removed and they do a further op to make absolutely sure they have removed all the cancers cells .Most people do not have to have this further op.Its like learning a foreign language at first as the medics really do use a lot of medical words that we just don’t understand .

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Ps Oestrogen positive is good ,oestrogen positive cancers have the best outcomes from treatment .

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Meri

 

Oh I am so sorry to hear of your diagnosis and the unsatisfactory experience with the bcn that is not helpful at all although it sounds like you got sooo much more info from your pain consultant.

 

I think when you read Jills post that should give you a lot of info which might help you.  There is an information and support section at the very beginning of this website which might be worth looking at.  If is of any consolation, my cancer was oestrogen positive as well and i was told that it was very treatable, I am on a hormone blocking tablet for the next 5 days but it is small price to pay.

 

I am sure that the ladies on the helpline will also be very helpful

 

Sending you a hug

 

Helena xxx

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Thank you all :slight_smile:

 

I have been reaing info pamphlets but its so much, and so many ifs and buts.

 

It helps to share it really does, knowing so many gone through this.

 

i expected the BCN to be really helpful but she was so abrupt and rushed, did not increase my confidence much though sure on another day she may have more time. Just gave me loads papers with appointments on but no explanation what each one is for, I have had to look online and organise in diary already full of hospital stuff.

 

Maybe its that this is such a minor cancer, treatments well able to sort out, compared to other people with more invasive cancer.

 

Just feels so much on top of other health issues.

 

Had steroid injection into shoulder joint yesterday as so painful, arthritis stuff.

 

Off to see Professor re inflammatory bowel disease next week, then got nuerologist to help with body dystonia which includes jabs :slight_smile: Feel like pin cushion! :slight_smile:

 

I think next few weeks will settle me before all appointments start beginning of April, give me chance to breathe.

 

And just arranged a massage for next week!!! :slight_smile:

 

Thank you all again for responses they keeping me sane :slight_smile:

 

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I did try to ask my list of questions but was rold to focus just on next bit, and when tried to share about concerns re day case they just dismissed.

 

my op is late afternoon, after two procedures in morning,what with asthma amd bladder retention issues after ops it will be a long night, maybe when I see doctors I can share concerns better.

 

:slight_smile:

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Meri ,you will be able to stay in O/N don’t worry about that .Tell them at pre op appointment about your other health issues,they really are geared up for you to stay in as everyone reacts differently to anaesthetic and although straight forward it is not really a minor op .

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Meri ,ask your questions here ,very good chance someone will have been through the same and we will be able to help with information and share our experiences .I was very confused when first diagnosed so much to take in ,I got lots of info and reassurance from ladies on the forum ,much more than from medical professionals !!!

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Thank you all :slight_smile:

 

I am going to wait till pre assessment to share health concerns and then surgeon.

 

I would love to come home same day if I feel ok and have arranged extra carer overnight, daughter coming to stay as will be near Easter bank holidays.

 

I will use next few weeks to ease my mind, process all the info in my mind.

 

Have some complimentry treatments and get out as much as possible to take my mind off things.

 

Had better nights sleep last night, took some nighttime Kalms which seemed to help.

 

Not much sleep is dreadful to cope with things.

 

I will let you know how I get on when have appointments.

 

I am under Kings hospital in London, they one of the best, and I plan to go to the monthly support group at breast care unit to help.

 

I can see all will slot into place eventually but the stress is immense.

 

Thank you for being here :slight_smile:

 

 

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Hi thought do message, I am gathering so many helpful tactics on this site, thank you.

 

i still in limbo land :slight_smile: waiting wiating wiating for op on 12th April, six weeks from diagnosis seems forever.

 

But it has gven me time to process info, sort questions, prepare extra care support as will need help to get to all the apointments, see social worker, and family.

 

I am doing a lovely journal, which I like doing anyway, collages, inspirational words, my feelings, pictures, poems I write, I love writing and do lots poetry so good way to offload feelings.

 

Found one with colourful butterflies to remind me transformation is a process and beautiful surprises come along the way.

 

Like you lot! LoL :slight_smile:

 

Also crafting a blessing blanket for myself, I love doing crochet, and snugling up in something made speicially to comfort and cuddle (as I have no partner and my four cats getting fed up with fussing overload LoL!)

 

One friend has sugested a healing crystal necklace to be made of crystal beads gifted from my freinds to wear on my journey. How lovely is that? so many posting me beads :slight_smile:

 

So I feel blessed, nurtured, but don’t get me wrong whilst my ‘get on with it’ aproach is arising I am still scared very much, not so much about the cancer, more about how my body will cope with all medical stuff.

 

I think this forum is so helpful, thank you and hope you all find blessings on your journey too. :slight_smile:

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Hi Meri,yes 6 weeks seems like forever ,have they given you some assurances about staying in overnight ?

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Slow progress,but at least it’s progress!!!