My Wife has breast cancer and multiple sclerosis- help & advice would be great.

Hello to everyone on this wonderul forum.
My Wife is only 36 and has been living with the effects of MS for almost 18 years. She was, until recently, a district nurse team leader but had to retire on ill- health due to her MS.
I am also not too well and am unable to work.

This year was supposed to be “our year” where we both get stronger and fitter and do all the things we can. We did not need another lesson of “life’s too short” but here it came in early April- my lovely Wife was diagnosed with BC.
We have an three and a half year old Son.

We are devastated and extremely frightened. My Wife being an ex- nurse has had experience of nursing cancer patients in the community and she cannot help fear the worst. But she is very brave and chirpy most of the time which I think is extremely strong and corageous.
My Wife initially went private for the CT scan of her lump because her Doctors’ referral “went missing”. The consultant said that it looked like fat nacrosis and we left the Priory thinking everything was pretty much okay. The NHS finally caught up with her and she had three biopsys taken all of which floated in solution. She was told this was another good sign. “Fat floats/ cancer sinks” he said.

However the biopsy came back as grade 2 breast cancer. She and I were very shocked.

My Wife then had another scan of her lump" which has reduced significantly since first discovery, and a scan of her lymph nodes in her left armpit. A biopsy was taken too of these nodes. The consultant who took these second samples said that my Wife’s mamorgram did not show anything but that because of the positive diagnosis she would have to go through the mamogram again with a fine toothcomb.
My Wife yesteday had to have a second biopsy in her armpit because the first one had too much blood in the sample. Poor thing.
Of course I too am extremely worried for my Wife and we are waiting for the results, which we should get tomorrow (Friday 8th June).

Please forgive the long intro but I have a few questions if I may?

  1. If the cancer is found in the nodes is that really bad news?
  2. Are there any people on this forum who have breat cancer and who also suffer with MS?
  3. What effects does the various cancer treatments have on MS?

My very warmest regards to you all.

I will look after my beautiful Wife and best friend whatever the future brings.
Rock

Bumping to get it on to latest posts hoping someone can help
Hi Rock
You’ve come to the right place as you’ll see all the
folks on here are extremely supportive and the helpine staff are
fantastic, Sorry I have no knowledge of MS and BC so it might help with your
particular situation if you give them a ring or speak to your BCN they may be able to put you in touch with others with MS & BC.
In answer to Q1 the
simple answer is no (but their are no simple answers with this disease),
they still class it as primary breast cancer and it doesn’t mean it has
spread elsewhere and if they are all clear it doesn’t mean that it
hasn’t spread (sorry don’t mean to cause more worry). The early days are by far the worst and the waiting room
is the worst place to be but they have to do lots of tests and checks to
get the correct treatment for your wife.
Together you will get through this (although you may need a tin hat at times :wink: )
L4W

hi rock
im sorry i cant help with MS and breast cancer - but my sis in law has MS and the main thing she suffers with is fatigue, obviously i dont know how much MS has on your wife but i would imagine that during her treatment this will be her main battle. but with good nurition and lots of rest she will get through it. have the hospital said anything about her ms yet?
i just really wanted to reach out and give you a hug - your wifes story is almost identical to mine. im 37, have a three and a half year old. i was also told it was fat necrosis at my biopsy and was also told - oh the tissue is floating which makes me think its not bc - bc doesnt float but fatty tissue does. a week later i was told it was grade 2 bc. my lump also shrunk significantly from a large area when i discovered it to a small lump by the time i went for biopsy. they could never explain why.
i had a biopsy on my nodes and then lad a lumpectomy and full node clearance - i was then told i had micro mets in my sentinel node, so only 1 node out of 29. i was really scared about this but have been reassured by my hopsital team and by the lovely people on here that its not a tradgedy. all it means is the nodes are doing their job and they know to take them out! there are many many women who have had significant node involvement and still happy and well years later, so try not to fixate on the nodes issue - its just one part of the whole story.
your wife may well be offered chemo and rads as well as surgery - i was told becuase of my age they throw everything at you and i am now 3/4 of the way through my chemo. its not been a picnic, but it really has been ok - even with a lively three and a half year old to contend with.
like others have siad, the wait really is the worst - i felt so much better once i had my treatment plan and got on with it and apart from the odd wobble have remained quite positive throughout. i have managhed to carry on workinging part time, spend time with friends , take my daughter out every weekend - i just have to lie down a lot more.
perhaps you cuold speak to the MS society for some advice about bc and ms? your wife cant be the only women ever to have gone through both and they may well have some good ideas.
you sound like a lovely caring hubby and that will stand both of you in good stead - you will get through this together. i know its shit, shitter than anyone deserves, but even after tomorrow you can start to look forward.
xx

Dear Rock Welcome to the forum where I hope you will find support during this difficult time. As Lost4words said you could also use our Helpline for information and support. The opening hours are 9-5 on weekdays and 10-2 on Saturdays. All calls are free and confidential Very best wishes Janet BCC Facilitator

Dear Rock,
I can’t help with the MS side of things, but your wife’s oncologist and neurologist are likely to liaise over her treatment. However, I thought I’d get in touch, since I have BC, diagnosed last July at the age of 38. I’m a GP, and like your wife, have had considerable hands on experience of terminal care. Somehow we don’t expect to get ill in our profession, and our knowledge makes it much harder initially. We know the significance of every bit of information immediately, and it often makes us assume the worst. For example, in the first couple of minutes after I was told, all sorts of things were running through my mind from worrying about lymphoedema, to the effects that radiotherapy could have on my hobby (singing), to thinking of all those patients I have seen dying young in less than ideal circumstances. I had images of botched surgery in my mind. I also became very concerned that I might have bone mets (spread) as I’d had severe hip pain for 5 months. I had an agonising 3 week wait for my bone scan to come back clear. Most patients can come to terms with things a step at a time, but in the profession we have to face the enormity of it all straight away. I can’t say anything to make the worries your wife will naturally have go away, but I can say that it does get easier. I remember I didn’t sleep at all for several days, and it was weeks before I stopped getting nightmares. But now 10 months down the line, I am enjoying my life, though still undergoing treatment. I feel that because I had to come to terms with everything at once, I got it out of the way quickly.
On the other hand, being in the profession makes some things easier, since we are able to access and understand medical information and choices much more easily than most. I have been able to spend a lot of time researching my treatment online whilst I have been off work. I chose to have my surgery in a specialist plastic surgery unit well outside of my area, both because of their specific expertise (I had a procedure not available locally) but also because I wasn’t happy to have that kind of surgery in a hospital where I was known. Knowledge definitely made it easier for me to make decisions, and cope with any complications that arose. I also had less fears than most going through surgery, despite going to theatre 4 times in a week with 20 hours of operating time due to complications. I found that my experience made me very realistic about what to expect post op, and I knew what to expect of my scars/appearance at various stages. Other women on the ward were very shocked post op when they looked in the mirror and there were alot of tears, whereas I was pleasantly surprised (I had an immediate reconstruction), having seen so many older patients who had surgery 30 years ago or so. I have definitely been able to optimise and co-ordinate my care due to my experince and knowledge, and I’m sure your wife will find the same. Medical and nursing patients are not easy, but I decided very early on not to be concerned about that. So I ask questions and research until I’m happy. I’ve not been silent when care has not been up to the standard I expect, and I don’t see why I should! Having spent all of my adult life serving others to a high standard in the NHS, I now feel that I’m owed the best care myself.
To answer your specific question about lymph nodes: There are a number of things which increase the risks in breast cancer, and lymph nodes are just one of these. Other features which increase risk are increasing tumour size, younger age, the grade of tumour, the histological type, herceptin positive status, hormone negative status, and the actual number of positive lymph nodes. So for example, I had 11 positive lymph nodes after 6 months of chemo. This, plus my young age and large tumour put me in a ‘high risk’ group for recurrence. If your wife really wants to know exact figures, her oncologist will oblige- they tend to use a computer programme called aduvant online. However, statistics are just numbers, and don’t tell us anything about our personal future. For example, my risk of getting breast cancer at my age was about 0.05% per year, ie very low risk, and yet here I am with locally advanced breast cancer. My prognosis is not nearly as good as I initially hoped, but what counts is what group I end up in, not the percentages.
I wish you and your wife well during this very difficult time. Breast cancer, like MS, is not at all easy to life with, and no amount of medical experience can prepare you for what it actually feels like. My personal approach has been to do everything I can to improve my chances, and then to make sure I enjoy my life. I recognised early on that the most significant thing I had lost was confidence in my future- But in reality none of us know what lies in store, and we could get run over my a bus tomorrow. So in fact I had lost something that didn’t exist.
It won’t be easy for you either. My husband has been fantastic in supporting me, and he let me go through the various stages of grief and acceptance at my own pace. I have found one of the most annoying things is to be told to ‘be positive’, since that can feel like denial to those of us with a lot of knowledge, and he managed to avoid this! Do take advantage of the support available locally, whether through your breast care nurse, or the cancer support centre (there’s usually one attached to a main hopsital)- they usually offer support to partners too. And once the shock has died down, consider making time to do the things that you enjoy, and do let off steam to your friends etc- cancer treatment is a very long road, and we have both found it helps to have some normal activities that don’t involve cancer…

Mandj Husband here:
Thank you to everyone who has responded above. Sorry it’s taken me a long time to reply but for a while I couldn’t add a comment (bugs in the system I think).

My Wife Mandyj has posted now too which is good.

Thanks again to all you lovely ladies