Cancer is back

We had our meeting today to agree the treatment - the treatment is immunotherapy (Nivolumab). Is anyone on this treatment plan - please share your experience with me of what to expect. Also why did they say this treatment was for two years - anyone else was told this and why?
I just want to know what to expect from here on.

Thank you all 

hi pinks, one of the nurses did mention i may have this too, going to see the oncologist tomorrow, so will ask some questions as what to expect,  trying to keep a clear head, and take notes, has any one had issues where the one person you need the most to be there for you, just cant deal with it, sitting down here, waiting for the clock to count down, whilst husband is in bed, think we just got through the masectomy, but this feels like its overwhelming us both, coming back somewhere else in 10 months. and to top it all chased the mammogram results on my remaining boob, nurse said may be because they are taking a second look, couldnt bear to have 3 out of 3, i totally understand if its too much for him, but all i want is a hug, cuddle, i know its not going to be alright, but so alone, and its been so childish some of the comments, thank you all for sharing your journey, wish the husband would read some, i have tried to warn him tomorrow this type of cancer isnt just a cut it out and i will be home for tea, able to eat, sleep, do normal stuff, go out to restaurants, we have done nothing since the new diagnosis, feel we have wasted so much precious time, lets hope i will have some light at the end of the tunnel tomorrow morning, one battle at a time i suppose, sending late hugs to you all x

Dear wicky 

Sending you love, hugs and best wishes for today. This is a very difficult time for both of you - this is not an easy journey. Stay positive and I hope all goes well for you today.

Take care 

Pinks said:

I’m so sorry to hear about your wife. Her journey sounds similar to my husband.

Thank you. Yes, my wife's situation was very similar to your husband's. It's a terrible situation.

Pinks said:

I did ask myself the same question - why didn’t my husband had chemo after the surgery to make sure if any thing was left the chemo would have taken care of it. But it was never offered.

Another thing I have wondered about is, why wasn't my wife given some regular scans after her surgery, in order - perhaps - to detect any recurrence as early as possible?

On both questions, I get the impression that treatment protocols and post-operative approaches might differ between the various NHS regions. I fully accept that there is no 'right' answer, that treatments and strategies against this appalling disease are being developed and changed all the time, and that all of the medical professionals involved will be doing their very best. But still - I have wondered.

For information, my wife's treatment was in Scotland. (And just to be clear: I have complete confidence in, and respect for, the people who handled my wife's case.)

In a subsequent post, you mentioned that your husband will be given Nivolumab as immunotherapy. Had my wife been healthy enough to handle it, she would also have been given Nivolumab treatment - so I guess that is one of the current standard treatments for secondary OC. That was the definite plan for my wife, however, by the time we were expecting the treatment to start, the secondary cancer had started to badly affect her digestive system and, as I now know, cancer treatment isn't given to patients who are ill.

I send you and your husband love, hope, and my very best wishes.

Dear Wicky 

reading your bio I see you are a very brave lady who has been dealt a devastating set of cards when it comes to your health. However you feel at the moment you still have your loving husband by your side. You may not both be at the same stage of processing and adjusting to your latest diagnosis and I hope you do not fall out about that. I do not think you will. 
Family dynamics of coping with this disease need to be negotiated with care. All our emotions are close to the surface and sometimes the same emotions do not coincide nor the amount of information we each want to know.

I am relatively new on my own journey. I visited my local Maggie’s centre yesterday for the first time not  knowing what to expect. I found myself in a very safe environment to talk (and cry). Opening up about my emotions. I came away feeling it was environment I would direct my loved ones to go to to talk and do the same.

I personally would not encourage my loved ones to read comments in this forum because everyone’s diagnosis and treatment options are different.

take care xxxp

thanks RosieE, after oncologist appointment yesterday, totally brought us back to ground zero, and hugging each other, few tears, but penny has dropped, its no ones fault, still confused as hell, but our nurse called back to clarify a few things and apologise, mentally knackered, spoke to one of the maggie nurses when i had a breakdown before one of the radiotherapy sessions for my masectomy, she said she hears it all day long, patients say, they can take my boob, my hair, my confidence, but the mental impact is another level.

think it was hard for us both as we only have each other, no kids and family left, well nothing to say, we have always got through everything together, losing 3 parents, clearing 2 houses, helping our lovely aunti move into her apartment after living in her house for 80 years, shes still sprightly, active, but now also possible on the cancer journey, hubby opened up that he didnt want to worry me, but both been so angry, confused and frightened, so waiting for next appointment, operation, want some time before it effects us, to celebrate his 60th due 16th october early, last year masectomy happened 3 days before his birthday, hadnt realised how this deja vu was effecting him.  thank you for your wise words, had some random gifts recently the strictly come dancing amys book about breast cancer and an inflatable punch bag, think the bag may get more use!, thank god this forum can turn things down a notch and everyone is on their own journey, painful, scary and hopeful.  looking to sort our a break for a pre 60th birthday, just to reset, and to feel like we have a little control of this little bugger nestling next to my remaining boob.  still waiting mammogram results, chased them, hearing nurse say they may be taking a 2nd look, christ, but for now that will be boxed away until we hear, dont want 3 out of 3, have got used to how i look know, except for this weight loss,

hugs to all x