13 years ago. In view of my family history, at the request of my oncologist, I had an appointment with an onco-geneticist who had generated, obviously, anxiety, questioning, stress, waiting. The result came after one year: negative! That is no BRCA mutation found at home. OUF! But at the time, this doctor had told me that this test was valid in the current state of science, that is to say at the moment T. In other words, the research was likely to reveal other mutations in this case, one should think of coming back to see it.
You know me, I look at breast cancer information daily. I had of course read that researchers found other mutations of embarrassment, including PALB 2 (but not that, I spare you the list of acronyms too long), which significantly increase the risk of triggering cancer ( breast and ovaries in particular but, again, not that). And then the case Angelina Jolie had enough talk about hereditary cancers that I could (had to) wake up!
Anyway, ostrich policy or denial, I have not thought at any time that I was concerned and it would be good to repeat an onco-genetic ride.
At the same time, all this time, life has felt for other members of my family.
13 years later
With all these elements, my dear and tender oncologist whom I have seen several times these days (with my body defending) strongly advised me to resume an appointment with my charming onco-geneticist.
As you can easily imagine, I did not go flower to gun. Not only if you discover a mutation, it can impact my own life (mastectomy of the remaining breast and removal of the ovaries) but especially that of my daughter and a part of my family, of course.
Waiting room, an hour already that I looked at watching all these women stressed by the results they hope negative. Finally an assistant arrives and offers me to complete with her my family tree to win (or spend) time. The problem is that, for lack of available office, she offers me to do it on the spot, history that everyone knows who I lost as close recently! Of course I refuse, even leaving her wandering in the hospital to find a more confidential place! In short, once this tree laboriously filled (it is necessary to search in a memory where the pains, the diseases, the mournings are buried) I ask him to take the blood draw, here again, to save time, taking into account the difficulties nurses have to sting me. 17h the levy must leave but for that I must sign a consent. I read it conscientiously and refuse because shadows appear to me and deserve more explanation. Too bad it will wait for my interview with the doctor who I hope will receive me before the night.
The boomerang effect
Half an hour later, I finally found Dr. O., whom I had met many times in the congresses. I am no longer the patient "lambda" since my reports have exceeded the patient relationship doctor "classic". She receives me with a big smile, embraces me and we begin the discussion. A screed of lead on the shoulders, I exchange on the members of my family died since all this time, and she explains to me, paper in support all the genes which we will look for at home.
And then all of a sudden lightning falls on me. She explains to me that, at the time, only the BRCA1 and non BRCA2 mutation challenged by the Pr FS laboratory was tested, which did not consider that family history required this analysis. I remained 13 years convinced that my cancer was not genetic while the research was partial. Thank you to this teacher who did not feel good to reassure a family when he had the necessary elements to do so without difficulty. This is the boomerang effect: the fear that comes back to you in the face! Had she told me, or had I concealed this detail, it will remain a mystery! Anyway, no special precautions for follow-up were taken for me at that time.
But the festivities were not over yet! She adds with a smile (she smiles all the time): "the state of the art of the current techniques has notoriously evolved since 2003! I propose you to redo all the tests BRCA1 and 2 "(plus those concerning the new friendly genes appeared since obviously). (Boomerang 2)
I explain to her that this is very bad news and that I do not look forward to waiting another year to find out if the family risks of triggering other cancers are important. That my daughter, my nieces grew up, that the impact on all would be like a tsunami. She refutes my analysis by telling me: if we discover a mutation on you (which seems likely to me it seems, but I'm in cotton), girls and women of the family branch concerned will have the opportunity if they wish to do the test in their turn. There are two solutions: either we discover a mutation in them and they will have a close follow-up, extremely codified in the recommendations of INCa * (See below);
Yes but: if we do not find anything, then it is the state of the art of current techniques , and it seems that my family tree leans towards a mutation! So we are a family at risk +++ in any case I thought! So with increased surveillance for all! In short, I was right, very bad news in both cases! I avoid asking him the question, we'll see in a year!
In short, we continue the festivities. The consent I have to sign arrives on the carpet. I explain to him that I do not understand certain turns of phrase. It is proposed to me, to agree that my sample be used for research. Of course, it's yes. But I am asked especially if I want to be warned if another embarrassment (that one would discover in a few years) predisposes me to "other" cancers !!!! What does "other" mean?
And all other cancers: not only breast, ovaries, colon but also lung, pancreas etc ... in short all! There I refuse so dry: to live with a sword of Damocles for life concerning diseases for which there is no possible prevention is unbearable for me. We therefore make a pact and decide on the three locations for which I can act, namely breast and ovaries (ablation) and colon (close colonoscopies). For the rest, we'll see!
I go out, with the heavy task of announcing it to my family members. I'm not obliged to do it for now (well, that's what I thought you'll see later). But if the result is positive, I am bound to do it, because it would be better for them to know. No, I am obliged, it is the law. Free to each then to make the process of personal research if it wishes it. No announcement device in this case. You fight with the bad news and you give the blow to your loved ones alone!
In addition, no psychological support was offered to me. Is it because I told him in the conversation that I had one elsewhere or is it because this proposal is only planned when the results are submitted? Here again mystery!
In short, I go home, determined to keep at least my daughter aware, at first. I explain and ask her, considering the worst, if she would do the test. To my surprise she replied that "yes, of course" with the flippancy of 20 year olds. Cancer, part of its genes or not, is a known and tamed enemy. But for me, not so simple!
Move of mercy
I receive a few days later, the report of this horrible interview (despite the kindness of Dr. O). Everything is consistent with our discussion. Except that I still feel what I perceived during the consultation. Our family tree is suspect and, what I had not imagined, the precautionary principle is in order. Namely: the recommendations must be applied in the interval that separates us from the results. Which means that I have to warn my relatives now!
The funny thing is that by reading the letter today to write this post, I realize that I already have access to psychological support! I had zapped the end.
Cancer does not let go of its prey! If the controls, which have been spaced apart, are extremely difficult and generate anxiety and stress, imagine being a carrier of embarrassment - that is to say imaginary responsibility for a risk that I would run to my loved ones - is unbearable for me. I know very theoretically that it would not be MY fault (or that of my forefathers), but in short, I can not do it. It would also answer that question of "why me" that we all ask ourselves.
In reality, I do not care about the results for me, but I do not want him to touch a hair of my daughter, my nieces etc ...
The wait will be very, very, but then very long!
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