Today we (my wife and i),went for an appointment with the oncologist.We were informed that my wife has secondary triple negative breast cancer in both lungs,(17mm in left and 13mm in right).Where do i start ? I thought breast cancer was devastating…
I don’t know where to start! We have been offered early access to a trial,should we wait until the mass enlarges or try to shrink what there is now ? How dangerous are these trials? No one in the NHS wants to give you a straight answer.Does anybody know how they grade this…is it based on size ?
Welcome to the Breast Cancer Care discussion forums, you’ve come to the right place for some good support for both yourself and your wife.
Could I suggest that you give the helpline here a ring tomorrow when the lines are open again, the staff are here to support you. They will be able to talk through all your questions with you and give you some information regarding trials and what is entailed. Calls to the helpline are free, lines open at 9am tomorrow (9-5 Mon - Fri and 9-2 Saturdays)
I have also put for you below the link to some of BCC’s publications you may find helpful.
Secondary BC
Clinical trials:
breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/94/
Hope this helps. Take care,
Jo, Facilitator
Husband, I am so sorry you’ve had such horrible news. I can’t offer any answers, being at a different place with my cancer, but I did want to make sure you got at least one hug this evening. What a massive bomb to go off in your lives. I can only begin to imagine what you two must be going through so I’m not going to trot out a stock phrase, there isn’t an appropriate one other than “that sucks”, but that doesn’t even scratch the surface.
There are quite a few people who post in the secondaries section of the forum, perhaps you could post the same message in there and see if anyone spots your post? People aren’t ignoring you, it’s just that the forums get really busy and people often stick to specific areas of the forum when talking about their own particular areas of interest. You might also want to look at some threads on cyberknife, but you’ll get that info from the secondaries posters who are a very knowledgeable and helpful bunch.
Anyway, I hope you manage to get a bit of sleep tonight, you’ve had a seriously rubbish day. The helpline will be very good for you too, so give them a buzz in the morning.
Love and hugs
CM
x
Hi. A cyber hug from me too - also trip neg with sec in both lungs. I’ve just started treatment and it is one of many they can try. I’m on taxol with avastin. The trial options complicate things! Please remember you are entitled to a second opinion. The Marsden in London get all my scans nd results nd tell me what they think whenever I ask. It really helps!!
Keep in touch!!
Sadie Xx
Hello, so sorry you’ve had such shocking news. Its so hard to be in shock and have all the feelings AND have to try to understand all the health bits - the helplines are great if you want to talk to someone, very best wishes Nicola
Hi husband, I think you and your wife have a hospital visit on monday to plan treatment. I just wanted to wish you all the best. I tend to keep an eye on the ‘trip neg secnd recrs’ thread. Lots of knowledge nd support. You may want to post there nd pls let us know how it goes. My best wishes to you both.
Sadie Xx
Hi husband - I’m so sorry you’ve had this awful news. Trying to take important decisions in the middle of such turmoil is terribly difficult, and once you have your onc’s recommendations I would certainly consider getting a second opinion from a major cancer centre.
To try and answer a couple of your questions - the grade of cancer is based on the aggressiveness of the cells, not the size of the mets. There are 3 grades, and most of us are grade 2 or 3, I think Triple Neg is often grade 3.
In answer to should you wait or try to shrink them now - I doubt there’s any ambiguity about this, shrink or zap them asap.
Regarding trials - do you know what trial you are being considered for? I’m assuming it’s a chemo trial. All trials are different, but a standard chemo trial would be to have two arms comparing the current best option as a control against either a new chemo or a new combination of existing chemos. Asking for the known stats on the chemo in the control arm would help in making a decision on whether to gamble on the alternative. You wont get to choose which arm of the trial your wife is in. One advantage of trials is there will be careful monitoring of progress - although with your wife’s diagnosis one would hope this would happen anyway.
You don’t say whether your wife has just been diagnosed with bc, or whether this is spread from an earlier diagnosis. And there are of course other options for lung mets other than chemos or in addition to chemo - surgery, highly targeted radiotherapy etc.
Take care, finty x