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Newly diagnosed wife

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Re: Newly diagnosed wife

There will be things you can fix...eg when I was in hospital my handbag was stolen (my fault, should have given it to the nurses station as they advise) - and my poor OH spent a couple of days running about canceling credit cards, arranging for a new mobile phone,getting the locks changed etc. During chemo he would go off and get lots of little savoury pastries and snacks which he knew I liked when my appetite wasn't great. He taped the whole of Green Wing because it made me laugh......No, he couldn't fix the cancer but he could fix everything else and I don't know how I would have managed to get through it without him. I am sure you will be equally indespensible for your wife.
Sarah

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Re: Newly diagnosed wife

Hi Paul

I justcread your last post and wanted to add a little of my exprience with my OH . He is a fixer too. He found the helplessness of not being able to fix the cancer very difficult to cope with. So he tried to fix me emotionally. Each time I found more about my cancer I would get upset. It was kind of a grieving process for me where I could come to terms with what could happen. But he just saw the upset. So ge would get angry with me and tried to stop me finding out more. I know he just wanted me not to cry.

I did eventually persuade him that this was part of the process and for now I know all I need to about my cancer and have started to move forward. There are less tears. He did find one area he could fix. We have two small children 2 and 5 and I was very anxious about them. He has taken the pressure of me with them. He makes sure they are happy. I am not saying I don't but their dad now knows as much about their world as I do. This is very comforting.

Your situation may be completely different, but I do understand youbwanting to fix things. Try to channel it into something that will bring comfort to your wife. I can see from your posts that you are supportive. Please remember that there will be lots of ups and downs on this journey but you can be the greatest part of helping your wife through it. Dx

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Re: Newly diagnosed wife

@jansman - I read through your blog yesterday and found it helpful. You sound a little like I am - wanting to understand and help as much as possible.

I think one of the big things for me at the moment is I am a fixer. I like mending things. The boys keep bringing me all sorts to mend, and I normally manage it. Then I go and get presented with something I cannot fix.

P.

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Re: Newly diagnosed wife

Hi Paul and Paul's wife
Hope you had a good evening with your friends, and as well as a good laugh, l hope you managed to come to a decision, with the help of your friends and Paul.
l was diagnosed in February, l was assured by the surgeon and the ultra scan that no lymph nodes were involved, when they did the biopsy it showed there was a trace of cancer in the node, so l had a lumpectomy and aux clearance in March, two weeks later l was was told not enough clear margin was taken and l would need another op, on top of this, l had 16 out of 18 glands with cancer, the surgeon said he was shocked, but not as shocked as l was!! after the second op in April, l was told again not enough clear margin was taken so l need a mastectomy, this was done in May. Now when l look back, l remember when l was first diagnosed asking the doctor if he would just do a mastectomy and get it out of the way! so to speak, he assured me there was not need, as the lump was small and no signs of spread!! how wrong was he.
Given the choice again, l would just go the a mastectomy, the stress l have been under the last three months has been so hard to bear. I started my first chemo on the 11th june, if l'd had my mastectomy in the first place, l would be almost finished with the chemo, instead of just starting.
I am surprised the doctor is sitting on the fence, we do need a bit of guidance, so perhaps you need to ask for a second opinion. It is the waiting game, l would just think 'cut it off' but that is me!
Goog Luck to your wife whatever she decides
Hugs to all
Sandra xxx

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Re: Newly diagnosed wife

Paul
Just wanted to say glad the evening went well, it sounds like you are being a great support in a situation where all of us our out of our depth at one point or another.
All the very best to you and your wife for that difficult decision, and the treatment.
C xx

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Re: Newly diagnosed wife

Again thanks all. From what I could hear the girlie night last night was a success. I thnk I overdid the wine order a little, but that was better than running out, and I suspect there will be a few more such nights over coming months, so it will get drunk.

We did get a few funny looks at the supermarket as most other trolleys were loaded with beer and burgrers, but we had wine and nibbles!

I will be showing her the comments here, as I think they may help her a little in her thoughts.

Paul.

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Re: Newly diagnosed wife

Hi Paul Well I had a quite a large lump in my breast and was offered exactly the same as your wife. I was diagnosed on the wednesday and was to have my operation on the friday. My surgeon told me that if the lump was removed and things didnt go so well for me then I would have to have my breast off in the end so I just said said straight away take my breast off and get rid of the cancer. The operation was not as bad as I thought I was home home the following monday then 4 weeks later I started 8 sessions of chemotherapy I lost my hair but had a great wig I was very lucky as I didnt have many side effects from chemo.I wear a prostesis now and am back at work full time and I do feel so well. It took a whole 12 months for all my treatment and hair to grow back its a very hard choice for her to make but I know now I made the right one.You are such a support to her she is very lucky to have you let us all know what she decides I hope all goes well for her Linda x

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Re: Newly diagnosed wife

Hi Paul

I see that you have received lots of good advice already, Just to add to what has been said, I had chemo first and had total response to chemo, (4 X CA and 4 X Taxotere) whch means that the tumour (3cm) completely disappeared. I still had to have a WLE (lumpectomy) and remove the margins around where it was. It is barely noticable that I have had surgery. With regard to lymph nodes, I was told that 9 had been infected, so they were able to tell, I guess some scarring or something is left.

It is great that you are there for you wife. I really hope that you have somebody there for you too, in addition to your wife! look after yourself! I think that it is harder for the partner, my husband was brilliant, but has found it difficult.

I also agree with you being honest with everybody, particularly the children. I was told that if you don't give people enough information they will make their own (usually wrong)assumptions to fill the gaps! I certainly find this to be the case.

Take care and I wish your whole family all the best, it's not easy, but you will get through it and come out stronger!

Love Nicky xx

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Re: Newly diagnosed wife

Many thanks for all the comments - it helps knowing that others have been in a similar position.

I have just received a copy of the book "Mummy's lump" which looks very good for starting to talk about it with the boys. Our eldest aksed her of she would be poorly for a long time the other day.

One challenge I will have is trying to get the balance between being supportive and giving her space right. I am not the most emotionally sensitive person around, and I think when in the queue for tact I misheard and skipped out of the queue wondering why people were so keen to pay taxes!

I have seen the comments about the chemo first and they help me feel a little better about that option. I suspect that will be the option she chooses, but I do noy yet know. Hopefully having the girls round tonight will give her a few perspectives on it - we have some very good friends and family.

I did try pushing the consultant a little on which he would advise, but he was very much on the fence on it.

The next step is Thursday and the results.

Thanks again everyone,
Paul.

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Re: Newly diagnosed wife

In relation to kids you might also find the thread about dealing with your children's schools helpful (in youger women), a few of us have posted on there, and there were quite a few shared experiences of how people have approached their schools.
C x

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Re: Newly diagnosed wife

Hello Paul

I'm very sorry you have to come here - no one wants to be here, of course, but you will find that there are some really wonderful people here.

Like Snoogle my wife's situation is somewhat different, but during the course of my steep learning curve about this disease I learnt that a newer approach is to attempt chemo before an operation.

The reasons for this are that in this way your wife's doctors will learn more about her particular cancer, especially which therapies it does or doesn't react to. Secondly, there is a good chance that chemo before an operation will reduce, perhaps significantly, the size of the tumour, meaning, of course, that the operation does not need to be as radical as might otherwise have been the case. As an aside, studies have shown that lumpectomy outcomes are more or less the same as mastectomy outcomes. In the most favourable scenario, which I'm sure some of the ladies here can confirm, pre-adjuvant (i.e. pre-operation) chemotherapy can make the tumour disappear altogether - not common, but possible.

I would recommend Snoogle's advice about how to handle your children. Snoogle gave me some advice in this respect last year and I found it very helpful.

Lastly I would like to join everyone else in wishing you, your family, and most importantly, your wife all the best at this very difficult time. And I hope you can enjoy your anniversary neverthless!

Guy

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Re: Newly diagnosed wife

Paul,

It's so good to hear that you are being so supportive of your wife. My husband has been a terrific support to me since my diagnosis, unfortunately of secondary breast cancer just over a year ago. We are working through this as a team.

I can't really give any advice regarding your dilemma over surgery or chemo first as my situation was so different.

However, I have two young children age 7 and 11 (6 and 10 at time of diagnosis) and have to say that we have found that honesty has been the best policy for us. You may also want to be in touch with your eldest's school and with your younger one's nursery school so that they can be aware and look out for any changes in their behaviour and generally be supportive to them and yourselves. Being lenient over homework handed in late or knowing that other parents may be picking your kids up at short notice is really helpful. Our children know that they can ask any question they want at any time and even ask the same questions over and over again if they don't understand or forget the answers.

I hope that you come to a decision which you are both happy with. At the end of the day you can only make the best decision based on all the information you have, so ask as many questions as you need to of any professionals you are involved with.

Wishing you both all the best.

Snoogle
x

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Re: Newly diagnosed wife

Thanks for that Debs i hadn't heard that

Jx

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Re: Newly diagnosed wife

Hi Paul,

You posted this just one day short of the anniversary of our first visit to the breast unit a year ago for mammogram, etc. I am so sorry you have to join us here and I understand how you must be feeling just now. For me it seemed far worse than if I had been diagnosed myself!

My wife was slightly older than yours at 47, but still far too young to be going through this. Our children are also older (23 and 17 at the time), so I don't really know about that part of it.

I found it helpful to write down my feelings and issues, etc. and I put those writings in a blog. There are so many things I could say that are covered in there so, if it helps, you can find a link to that in my profile page here.

The good thing to say is that we are through the horrific time now and, whilst it will never go away and our lives are changed forever, things are so much better now than during those dark times.

I can understand your wanting to give your wife space with her friends, etc., but I found it good to be part of it all as much as possible and I think my wife appreciates that. For me, this has not been her problem with me supporting her, it has been our problem to get through together.

You also need to look after yourself whilst supporting your wife. This is a terrible shock for you as well, and you also may need support to get through it.

Whether you look at the blog or not, if you want to PM (private message) me about anything, then please feel free.

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Re: Newly diagnosed wife

Hi Paul

So sorry you are joining this site with this experience. Like you, my husband was behind me, and thought it might help you to know that support has helped so much in getting through and in learning to feel whole and attractive again since.

I was in the same position as your wife, similar age at 36, two children similar ages. I was told lumpectomy may be an option if I had chemo first, otherwise mastectomy then chemo. I knew I had nodes involved, so was always going to have chemo.

I would say that the way I felt about surgery at diagnosis and the way I felt about it during treatment did change a few times. At first what surgery they did seemed less important than it actually felt later, when there was time to reflect. I just wanted to get treatment started and was prepared for immediate mastectomy, but the team I saw suggested the chemo first rather than after. It is a really tough one, so different for all of us. I think I'm glad I was given direction by the team.
I did have a mastectomy after chemo, but lots of women do end up with breast conserving surgery. Having chemo first also meant that I'd had time to come to terms with the diagnosis and the surgery I was facing, and it did help psychologically to feel the chemicals having an effect.
The Breast care nurse was a huge support for me, and very honest when I asked about the differences of each course of action- direct in her opinions. She asked what were my main concerns, and helped me work out what to ask the onc. Maybe speaking to the BCN, and asking the onc's view on the benefits of each in your wife's case would help.
Best wishes to you both.
C x

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Re: Newly diagnosed wife

Hi finty and jayne

I read on another thread that there can be scarring in lymph nodes if they were effected. I'm not sure if this is always the case though. Debx

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Re: Newly diagnosed wife

In reply to finty I had just a sentinel node biopsy op and in some ways i'm glad I did as on physical examination there was no sign of lymph node involvement. Traces were found in the nodes which means that i am now having chemotherapy to shrink the tumour prior to surgery which will aslo involve full node removal. Prior to SNB i was going to be having tamoxifen to shrink it with no mention of chemo.

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Re: Newly diagnosed wife

Just to say well done for being so supportive, I remember my partner being very helpful on the practical things which was great as I couldn't focus - in too much of a state.

I had a 2 cm tumour, and checked on the internet whether a mastectomy or WLE were better for long term survival, and it made little difference in my case (surprised me as I assumed that more drastic surgery would be a better bet). So I echo what the others have said, just keep asking them to explain all the implications, medical, practical(like recovery time) etcm and don't be rushed. You never have to decide on the spot, and can always ask for 2nd opinions etc.

Best wishes to both of you
Sarah

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Re: Newly diagnosed wife

Hi Paul
You sound like you are going to support your wife wonderfully. The decission as to what she does really must be hers. I must admit that my thoughts were to cut it out now...get rid. I was not luckly enough to have an option because my cancer was so close to me breast i had the whole thing removed. I if i had it my way i would have the two removed just to be safe. It all depends on how your wife feels about her body image. I wish you both good luck on this journey and i am sure there will be loads of advice alone the way.
Hugs XXXXX

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Re: Newly diagnosed wife

Jayne that is an excellent point about the lymph nodes - I'm wondering if anyone here had them sampled before surgery?

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Re: Newly diagnosed wife

Hi Paul,

You sound like you will be a great support to your wife in the months to come. There are so many decisions to make in the beginning at a time when you are still in shock from being told. Agree with Midge that you should have another conversation with your breast care nurse.

I was in the same position as your wife, i am 41 and had quite a large lump, 6cm by 6cm. I was offered the choice of chemo first to reduce the size or a mastectomy and then chemo. When i asked them what they recommended they said chemo then op, so maybe your wife could ask what they recommend in her case.

The one thing i would say is that i would now ask about the possibility of a sential node biopsy or removal first to know for certain if there is any lymph node involvement. There was no sign of this with me but at my op they will take a few nodes away to check, including the sential node.

I didn't think about it until half way through chemo but if the chemo kills the cells then nothing may show up in the lymph nodes. My oncologist and surgeon have given slightly different answers to this, the oncologist said something may still show up and the surgeon said it would. It may not be important to your wife as we all want different information but i would have liked to know for certain. Just something to think about and someone else on here may be able to shed more light on this point.

Good luck to you both

Jaynex

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Re: Newly diagnosed wife

Hi Paul

There are those on here who are more experienced than me in this situation- I did not have either a lumpectomy or a mastectomy. I had a mammoplasty where half of the breast is removed. What I would say is your wife should take as much advice as possible.

The advantages for having surgery first are that it is gone from your body abd some women are so relieved at this that they are not so worried about losing their breast.

Apart from the emotional and physical reasons for keeping your breasts there has been some evidence that chemo before the surgery is very beneficial in the long run with younger women. There are quite a few on this site who have had it. Also there is the reality that if the chemo is before and it shrinks the tumour you have proof that it is working.

There are probably many more reasons for and against and you are right this is a big decision. I would suggest another conversation with the breast care nurse or surgeon.I am sure others will be along soon who have had to make this decision.

I wish your wife the very best with her treatment. I am 38 and sadly am not one of the youngest here either.

Good luck. dx

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Re: Newly diagnosed wife

Hi Largerbloke

You've come to the right place for support as the many informed users of this site have a wealth of information and experience between them.

While you are waiting for replies may I suggest that you give our free helpline a ring on 0808 800 6000 and have a confidential chat with one of the breast care nurses who are here to support you and your wife through this, lines are open to Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.

I have also attached a link to our publication 'Mummys Lump' which you may find helpful whilst talking to your children. http://www.breastcancercare.org.uk/search-results/*/changeTemplate/PublicationDisplay/publicationId/...

best wishes
June, moderator

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Newly diagnosed wife

Hi All, Just introducing myself.

My name is Paul, and my wife had just been diagnosed with BC. We are still awaiting the pathology report. We are due for our next appt on Thursday - our wedding anniversary.

My wife is 40, so while not the youngest diagnosed it is still a little early.

We have two boys (7&3) that we have told a little about mummy having a lump. We are also "going public". The last thing I want is people feeling awkward about whether or not they are supposed to know.

She currently has a decision to make. The tumour is larger than would be normal for a lump removal, so she has been offered the choice of surgery then chemo, but surgery will be a mastectomy, or chemo first to try to reduce the size so that the lumpectomy is an option. What a choice:-( Unfortunately that decision is one I cannot help with as I cannot hope to understand the emotional side of that. I have made it clear that she is more than her breasts, and that if it was me in the position I would have been handing the consultant my pocket knife and asking what he was waiting for!

I have invited a few of her best friends round for Saturday - the boys were already staying at grandparents. She is aware and happy about it - I would not dream of springing something like that on her! hopefully they can help her decide how she feels. I will of course be out of the way for as much of the evening as I can, and when I need to drop in to make sure glasses or nibbes are in order, I may be a little clumsier than normal to announce arrival!