I was diagnosed in May and have had two ops, one to remove the cancer and the other to remove precancerous cells. I am yet to receive the results of the latest op. hoping that it comes back clear and then I can start the rest of the treatment. Even though I was give a Grade 3 marker, with lymph nodes clear, they have given me Chemo as an option. In my hearts of hearts I feel that I should have the chemo as my safe guard anyway - what’s your thoughts. I also wonder whether I should have a mastectomy, even a double! I’m just so confused on what is best for me.
I am finding it really difficult to cope, I am a single parent, who works full time, have a partner but we don’t live together, I don’t want to put my kids under any strain, I am worried about them.
I have always been a positive person who has lived life to the full, this, I just want to curl up and hide until it’s all over! I have always been able to see my future, plan things out, I can’t see further than tomorrow at the moment.
I have started a Journal, that is helping me, I write everything down. What else can I do to feel better? How can I be happy for my kids, the last thing they want is someone crying all the time? Any help much appreciated.
Bev
x
Dear cockerillbj
Welcome to the BCC forum. I am sure other members will soon be along to offer you some support. Please consider giving out Helpline a call as well. They can offer you information and support. They are open 9-5 on weekdays and 10-s on Saturdays. The number is 0808 800 6000.
Take care
Very best wishes
Janet
BCC Moderator
Hi Cockerillbj xxxx
Really sorry you 've had to join us on here, hugs to you xxxx. I think you are doing exactly the right thing at the minute, don’t try and look to far ahead and deal with each day as it comes. I don’t have kids but there are a lot of people on threads here who do. Have you read through any of the starting chemo threads at all? There is a good insight on those that will help. I am from the larch one, but there is a newish one for June and the ladies are lovely so maybe have a look at that.
Wishing you all the very best
KQ
xxxxxx
Bev, I know how you feel about the chemo option because I was offered it too, and had to decide whether to have it or not. A truly horrible place to be. I cried on and off for a week - sometimes for hours at a time! But once you have made your decision - the one that is right for YOU - you will feel SO much better.
I talked to BCC care line and Macmillan Support line, by phone, and I talked with my BCNs (both surgical and oncology). I was advised to write down all my thoughts about chemo to help me make a decision. I did this, as “For” and “Against” columns and this helped me realise that my initial gut reaction of “It’s not worth the pain for the little gain” was my final decision.
However, everyone is different, as is their type of cancer. My decision was made easier by the fact my tumour, although Grade 3, was ER+ve and HER-ve. My lymph nodes and margins were clear. Hormone therapy + radio therapy would most likely be effective on their own, and Chemo only added another 5% (up from 80%) to my survival chances after 10 years. For me, this wasn’t significant enough for 18 more weeks of agressive treatment, but I know many others would feel the opposite.
Make sure you know all the facts about your particular situation - there are online prediction tools you can use, if your oncologist didn’t tell you the percentage survival rates. Here is one:
](Predict Breast) It takes into account your age, tumour size and grade, hormone receptors and any other treatments you have. remember though, it’s only statistics based on previous cases, and treatments are improving all the time!!
When I told my oncologist I didn’t want chemo, she immediately offered me Zoladex, a 3-monthly injection to induce menopause (and therefore lower oestrogen levels). This offered a 3% increase in survival - so I only lost 2% by refusing chemo!! This is only appropriate for ER+ cancer though, so I don’t know if it would be offered in your case. It’s odd that they didn’t mention this before I refused chemo! Someone else on here had the same thing happen to them.
I hope this helps you in this very difficult time. Remember, chemo is expensive and if they didn’t think it might do some good they wouldn’t offer it - BUT (and it’s a big but!) if they thought it would make a significant improvement in your future they would tell you you were having it and not make you decide!!
Good Luck with your decision. It will get better. There is loads of support on here whichever route you decide to take.
You will get there. One step at a time. It is a long tunnel, but there is light at the end!!
Hugs.
Chris x
Hiya,
So sorry you’ve just been diagnosed. I know it’s a bummer when you’ve just first been told, your head is everywhere and i fully understand how you feel about your kids. I have two kids myself and i too am a single parent.
Firstly i’d wait until you’ve had all your surgery and wait for results because results can change dramatically after surgery.
Anyway, as to regards to chemo,at the end of the day it basically mops up any cells that they may have missed. My diagnosis was different to yours as i was lympth node positiven and all my nodes were involved. However, my CT scan was clear. Even though it was clear, it still didn’t ease my mind as there might be microscopic, nasty cells that might be lurking about that aren’t picked up on the scan. i am not taking any chances tbh. They told me i was having adjuvant precautionary chemo but then i wasnt really given a choice. My BCN said that if i didn’t have chemo then id be playing about with my life. yes you have to take into consideration the size of the tumor etc. etc but at the end of the day, its still cancer…
I have been lucky so far and i haven’t had any side effects as yet and i have had 2 lots of chemo…ok ,yes… ive lost my hair but quite frankly i can live with that, but the point is, i feel safe that im having a treatment, as i feel they are playing safe…if that makes any sense. That’s my view anyway. I know chemo isnt 100% guarantee but id rather take that chance just for the sake of 4 months… i’m willing to take any treatment my DR offers me as they know what they are doing…
At the end of the day only you can decide and it’s your body and your choice… so good luck with what choice you decide to make…
Also, as regards to double mastectomy,please could i ask but why are you thnking of having that? have you a family history of breast cancer? hope you dont mind me asking.
Take care
Karen xx
When I was diagnosed in Nov 2010 I wasn’t given a choice, because of the size of tumour I was told I needed chemo to try and shrink it before surgery. I had a grade 3 45mm tumour and am HER2+ also. I was told I would need a MX but in the even didn’t because the chemo shrank the tumour to nothing. Even now I know that given the choice I would go for the chemo as when I was waiting for a treatment plan I had visions in my head of the cancer running riot round my body. I remember looking at my toes and wondering if it was in there. So like KB says its like insurance over the rest of your body.
I would be lying if I said it was easy - it wasn’t - it was awful most of the time. I had 4 x AC and 4 x Paclitaxol and had them dose dense which is every 2 weeks instead of 3. And by the end of it I felt absolutely wrung out. I then had surgery, then radiotherapy and 12 months of Herceptin.
I went back to work full time in August last year and finished treatment in February this year. Its a long old road, but you have to deal with it in bite sized chunks each step of the way. When I was having chemo I didn’t think about surgery, when surgery came around I didn’t think about radio etc.
As regards to a double MX unless you carry the BRCA gene there isn’t much medically to gain. I asked my surgeon this question as I was quite prepared to have a double and he said that on average you only have around a 14% risk of a cancer in the other breast, less if you have chemo as part of your treatment, so for me I was quite happy to take the risk and just have a WLE on one side.
One thing to remember though is everyone can give advice but at the end of the day whatever decision you make if you can live with it, then it is the right one for you.
Any support you need you will find on here.
Take care.
Sam
I agree with Sam too…
Just remember have trust in what your DR advises you and not what everyone is telling you. xx
Also one thing i may add is just because you have negative nodes does not mean anything. My way of thinking is that if you have cancer, no matter how small it is, the chemo route is the best option…you are given it for a reason.
K xx
Bev,
Just re-reading your post again, you say that in your heart of hearts you feel you should have the chemo - to me, that is your gut answer, and I always think you should go with your gut reaction. To coin a phrase that is used on here now and again, it is the Gold Standard of treatment.
Sam
Thank you so much for you comments all of which I have taken onboard.
Karen, answer to your question about double mastectomy, no i have no known family history, but is it not a safe bet to have a double, no chance of it returning in the other then? I must admit I don’t know enough about this Cancer thing! so I still have a lot to learn, and i am hoping of which you already have, this site will hep me.
Like all of you i am so scared of what is happening and I want to do the best for me.
Thank you for your advise, comments really appreciate it. Its good to talk to others going through similar situation.
I am seeing my oncologist on Tuesday pm. Everything happens so fast doesn’t it, i hope i am taking in all the info i need to.
love and hugs and wish you all well on your journeys too.
xx
Hello Bev
Just another comment to say that I am the same as you, but again my BCN said that if I didn’t have it, I would also be playing my life. It is for insurance purposes, and is for only four months. It just takes on escapee and sometimes it does not need to go through lymph nodes.
Just had first dose of Chemo yesterday. Not feeling so good today but I know I have done the right thing.
Best Wishes
Liliy xx
Hiya, you are very welcome. I’m not brill at giving advise tbh as i am still learning myself…lol…mind you… i want to put all this rubbish BC stuff behind me…i dont want to look back at it…
As for double mastectomy, well i think that anyone who decides to have that should think very, very carefully about it. I would imagine it can be a very traumatic experience, it’s bad enough losing one but to lose both boobs would be very hard.I do understand why ladies decide to go though with it though. I think it’s best to speak to your dr regarding that…but like you say you are seeing your onc anyway so you can get proper advise of the medical experts and discuss it with them. However it depends on circumstances doesnt it? and whether you are of a higher risk of recurrances ect…I dont think i could handle it if it was me…but that’s me…but then again, if the dr said it was a must then i’d go along with it i guess, if it meant my life or havng two breasts id cleary have the breasts off…
i totally agree with Lily, my BCN also told me i would be playing about with my life too if i decided to not have chemo…
Karen xxx
Hi
I was dx over 4 years ago with a grade 3, 3cm tumour and 3 affected nodes and was recommended chemo. I was scared stiff at the prospect of chemo but the image in my brain was much worse than the reality. It wasn’t pleasant but it was OK, and in my mind was totally worth it.
As for WLE over mastectomy, I asked my surgeon when I was first DX what he would do if it was his wife. WLE was his answer. He said, ‘hopefully it will never come back but if it does, after a WLE it will recur as a lump in the breast, but if you’ve had a mx it will recur in the chest wall’. That decided me and I went for a WLE. I’ve not regretted it for a minute.
Just take some time to think things through. You feel under pressure to make a decision but a week or two won’t make any difference.
Whatever you do, don’t google, and don’t look too far into the future. Take a step at a time. That is especially true when going through chemo.
Take care, keep your head down and you’ll soon be out the other side enjoying life even more than you did before.
sorry. Double post
I wasnt given a choice, i had a WLE coz that’s what the dr recommended and WLE is just as affective as a mastectomy with rads…there was a time when they would only do mastectomys but research says that saving the breast is just as affective… xx
Hi,
I can only add to what the others have said. Go with your gut! And do ask your surgeon / BCN / Onc all the questions that come to mind no matter what. You need to make a fully informed decision and do what is right for you…
A lot of surgeons wont do a double MX unless there is a clinical need (like family history) - so you may want to check that out…
Good Luck with whatever you decide.
Rae
x
Hi I dare say you have made a decision by now and it will be the right one for you. Just remember you are very vulnerable at the moment. Take some time, talk it over with family and friends and don’t feel pressured by anyone. Chemo is a difficult topic, yes it’s an insurance and your bc nurse will want you to have it (she is paid to do just that) your oncologist also will want to put you on the pathway that they use for all in your situation. You are an individual ask them questions, one important one might be: if chemo is an insurance policy to mop up rogue cells why do so many women who are in the reoccurance and secondary forums have their cancer return cos they have all had chemo? X
Hi,
I can remember the horror of hearing I needed chemo and I was very resistant in the beginning. However, like you I had children and in the end, my surgeon gave me stats to look at and it seemed that (for me) chemo would increase my long term chances of survival, thus, there was no choice.
Chemo was hard, no doubt, and for children, its awful because the side effects are very visual. In particular, the well/sick cycle of good/back weks is hard for them to understand. On the plus side, if it means you have a better chance of survival, no matter how small, I would take it. 1% may not sound much but can make the difference…
You will need lots of practical support so don’t be afraid to ask for help with everything and be specific about what you need. Flowers are lovely but often a freezer meal or taking the kids out for a couple of hours is more useful!!
Good luck, you can do this, always remember what you are fighting for…x